Post Surgery

July 21 -
    I know... I am a big slacker. I can't believe it has been this long since I updated Cole's journal. I have received at least one e-mail a week since May, requesting an update. I have been guilted into it finally. I really do need a push every now and then. In a nutshell, Cole is doing fantastic. I mean absolutely FANTASTIC!! His liver is working great and he is developing very rapidly. His liver numbers are a little higher than a normal child, but they are only a few points higher. His AST and ALT are 60 something. The transplant guys aren't worried at all. They said these numbers may remain slightly elevated the rest of Cole's life. It may be "normal" for him. There is no expected adverse outcome for the higher numbers. So when they are happy, we are happy. And Cole is certainly happy. Health wise, Cole has had two more ear infections, but both times they were gotten rid of with the use of antibiotics. Cole is also down to lab draws only once a month now. His prograf level has been rock solid at a low 3.8 and his H&H is perfect. He hardly fusses at all when the stick him. Other than prograf, the only other medication he is getting is his monthly pentamadine shot. Cole's pediatrician is letting us come into his office and get the shot. Of course we still have to wait for an hour and a half afterward, with the nurse coming in every 15 minutes for vitals, but it sure beats going into the hospital and taking all day.
    Some of the interesting highlights of the past two months would be the annual Transplant Picnic in Cinci. We drove up for the weekend and stayed at Del's sisters home in KY, about an hour away from Cinci. The picnic was held at a place called Coney Island. It is an amusement type park, with a big water park as well. There were kids and families in all stages of the transplant process. Some not listed yet, some waiting, some transplanted. We only saw a few families we knew from our stay, but it was fun. We all had a great time. Cole is a little adrenaline junky. He absolutely loved the rides. The faster the better. He loved the rides where you spin real fast.... You know the ones where you feel like puking. He cried and would make the sign for more when we got off. I am not kidding this kid loved every single ride he went on. It was awesome to see him having so much fun. Anna was even a little intimidated by some of the rides. That is until Cole went on them and then she surely couldn't let her little baby brother out due her.
    Cole is walking like a champ now. He is nearly running, but it still more like a gallop. It is so funny!! I'll have to get a little video clip. Sometimes he really swings his arm, and other times he takes these little choppy steps. It is so cute. The problem he is having is that he doesn't like to go over edges. Like the edge of the grass to the mulch, it is a drop of maybe 2 or 3 inches. He just stands on the edge and cries to be helped over it. The physical therapist has been coming once a week, helping Cole work on things like that. But this kid is smart and stubborn. It is like he over analyzes a situation. If he doesn't think about the edge he is fine and goes over things no problem, but if something stops him and he looks and thinks about it....forget it...he ain't goin'. This is with any type of bump. He also may have a little weakness in his leg muscles, because it seems to me like he doesn't want to bend his leg when he is on one foot. Try it at home. Try walking down a step without bending your legs. That seems to be what Cole does. He tries to keep both legs straight. It looks like he has a leg brace on when he does.
    Cole's speech is also improving. Though it is slow. Anna is his best teacher. She can get him to say a lot more than anyone else. Cole just loves his big sister so much. He tries to mimic her, both good and bad behaviors. We occasionally have "scream offs" in the car. It is deafening. The kids are really starting to play great together. Sometimes I just like to sneak in and watch them play. It puts a huge smile on my face. Today Anna was pretending she was sleeping. She was in a little sleeping bag all covered up. Cole was jumping on her and laughing. Anna was also loving it.
    Cole celebrated his 2nd birthday on Saturday, the 17th. We had a very small party. Cole doesn't have many friends just yet. He hasn't been around many kids, but we are going to change that real soon. We invited our next door neighbors and their 7 year old daughter, and also some other friends who have two girls near our kids age. Unfortunately the family with the 2 girls, couldn't make it at the last minute, because one of the girls was sick. So poor Cole had no kids his own age. He didn't seem to mind. I guess he just doesn't know any better, but it hurt me to not have any child there that Cole could play with. I was really bummed. Cole did get a lot of cool boy toys. FINALLY!! I was getting a little concerned when we took him a few weeks ago to Toys R Us and he played with a dress up vanity. He did end up grabbing a lawn mower and pushing it all over the store, so that made up for the vanity thing. Cole loves his new Thomas train set. He also loves his matchbox cars, including some NASCAR cars, and he got a Home Depot Tool bench (way cool!). A lot of boy type books, with trucks and dinosaurs and planes. The playroom is starting to look like there is a little boy in the family now.
    The next big thing is Cole's one year transplant anniversary!!! Can you believe it? It has been a year since the transplant!! August 14th we are going to have a huge party. OR at least that is the plan for now. We are going to try to make up for the small turnout at his birthday party. We are not sure if we are going to do something here in Charlotte or we may try to go up to my families area in MD. The one year mark is a huge day for transplant kids. It is the first really big milestone. It is also a day of remembrance. Many transplant kids have a mixed emotion party. Many kids get their gift of life from another child who died. So it is a day to remember the very gracious gift and pray for the family of that donor. With our situation it is going to be a 100% PARTAY!! With many many prayers thanking our awesome God for the innumerable blessings he has given our family.
    And on August 20th Cole will be going back to Cinci for his one year follow up appointment. Unfortunately this is not an "up and back" appointment. They are going to be doing a number of tests on Cole. These mostly are just scans of some type, but it means NPO again, and a few more pokes. We are going to fly up commercially and stay for a few nights. But God willing this will be great appointment and Cole will continue to thrive.
    We cannot thank our heavenly Father enough. He has poured out His blessings on us, and I hope anyone who has kept up with Cole and our journey has seen the transformation that has taken place in our lives. The moment we let Jesus Christ assume his proper place as Lord of our lives, he began a change that will continue until our coming home day. I cannot thank Him enough for his mercy and comfort here on this earth. But more importantly, I cannot thank Him enough for His saving work on the cross, that paid the penalty for my sin and granted me eternal peace in heaven.

May 5 -
Cole started walking today!!!! (this is Del tonight). Tonight at dinner Dave told me that he thought Cole was just going to take off and start walking any day now. I said "Honey, its a process. It may take a few weeks still." Boy was I wrong. After dinner, Dave and I sat about 5 feet apart and started passing Cole back and forth. The farther apart we moved, he just kept taking steps. All the sudden, things just clicked and he started walking to one of us, then would turn around on his own, and walk back to the other. Then he just kind of detoured and literally took off walking around the house. He fell about 100 times, but he just popped back up and kept going. His face was bright red from all the blood rushing to his head while he was bent over trying to stand back up. But he wanted to keep walking. I tried to pick him up to make him take a break, and he got furious with me. This little guy had an agenda, and me picking him up wasn't on it. He was a walkin man! Finally... at 21 months old, and after 4 months of physical therapy, he is walking. We are all so happy. Anna was running around saying "Mommy! Daddy! Cole is finally a toddler! He's a toddler!" I imagine he will sleep well tonight, as will we.

Cole also had labs again today. He's been having them weekly the last few weeks because his liver enzymes (AST and ALT) have been elevated. Not horrible, but slightly above normal. (in the 70s when it should be in the 30s) Labs today show the same thing - still slightly elevated, but stable. Its funny, but this started happening when we stopped the prednisone, which functions as an immunosuppressant. I have no idea what this means - if its a big concern or not. We are going to Cincinnati on Friday May 7 so we'll talk about it with them that day. Also his neutrophils were a little lower today (800's when the minimum we really want is 1000). Please pray for normalized labs soon, and thank God for the blessing of Cole walking!

We are planning to take Anna to Cincinnati with us Friday. She started asking if she could go as soon as she heard us talking about going up. She is so concerned that we will be gone for a while - even though we explained it was only going to be a day trip. But when I learned that at school that day, there would be a mothers picnic, I decided not to send her to school (without her mommy coming for the picnic) and we decided to just let her come with us. Childrens Flight of Hope is flying us up and they have 4 passenger seats on the plane. So its perfect. Anna is so very excited. She asked me tonight if they would be serving us snacks on the plane. I said "honey, there won't be snacks. And there isn't a bathroom. So don't even think about drinking anything!" But it will be quite an adventure for her so we are looking forward to it.

April 27 -
    See you guys I just can't seem to find enough time to even finish a quick update. I'll continue from the last sentence from the 24 updated. Cole actually had a great therapy session today. He is definately taking several steps on his own. We pass him back and forth and he does great for the first 4 passes then starts flopping or sitting down. But this kid is sooo close. His speech is also improving. Today for the first time he actually said daddy... to me. I was sitting there helping him with lunch and he pointed and said DADA. Wow!! I was floored. However since then he hasn't repeated it. He is also saying a very odd word. He says FRODO. Anna had just finished watching Hunchback of Notre Dame and there is a bad character on there named Frodo. Yesterday she was running around with Cole hot on her heals pushing his walker. Anna was screaming, "Frodo is chasing me!!" Sure enough Cole was right behind her yelling "FRORO" or something very close to Frodo. I told her I didn't want Cole to be a bad guy, but he could be Frodo from the Lord of the Rings series.
    The only thing going on health wise with Cole is that his AST and ALT have been coming up a little over the last several labs. They have gone from 40 to 50 to 60 and last week to 70. Normal is 40 to 50. The docs aren't sure what to make of it yet. They want us to have labs done tomorrow the 28th. Normally we had been on an every other week schedule, but they don't want to get behind if this turns into something like rejection. Which it may be a little. The docs have been keeping Cole's prograf level very low because of the EBV. His level has been a steady 5, and they want it between 5 and 10, so he is on the low end of their target range. We need prayers for better labs tomorrow.
    Cole will also be going back up to Cinci May 7 for his 9 month post transplant check-up. Can you believe it has been 9 months? Wow time flies. We have been getting Cole out a bit more. I, Dave, actually took him to the grocery store. After I sanitized the heck out of the cart Cole loved it. It was like the kid had never been to a store or sat in a cart. Come to think of it, I don't know if he has in over a year! Cole was grinning from ear to ear, taking it all in. Funny how something probably so mundane to other kids can make Cole feel happy and excited. I also took him to Home Depot. The boy has a lot of catching up to do, especially when it comes to shopping at Home Depot.
    That is pretty much it as far as Cole goes. He is happy and healthy and growing like a week. He eats like a oinker and is actually heavier than Anna was at his age. He also has grown significantly in height since getting off the steroids. (that sounds a little like he was using "roids)
    The only other things going on in our lives is we are preparing for my big trip to Uganda. Getting my shots, going to meetings, and planning a huge church garage sale is taking up a lot of time, but serving God is awesome. Del and I also had the oppirtunity to share our life changing story on 91.9 WRCM a Christian radio station here in Charlotte. They interviewed us between songs from 7:15am to 8:15am. We shared how God has used this whole trial to bring me to Christ and bring Del back to Him. It was awesome. Both of us started crying when we gave our testimony.
    I, Dave, also had the opportunity to speak at the Donor remembrance service in Charlotte. This was an event to honor the donors and families who gave a precious gift, the gift of life. I really struggled over what I would say to these people. They had lost a loved one and very selflessly donated a part of that loved one to someone who many have never met. What could I offer these people? We never had to go that route. I basically told them our story and shared what it was like to be on "the list" waiting for life. I shared with them the types of prayers we prayed. But above all I told how it was ALL to God's glory. How He was involved in every step we took, every decision we made, every outcome, both good and bad. I felt the Holy Spirit within me that night. Del and the kids were out of town, but I certainly was not alone. I felt confident and my message felt pure and true. Lifeshare of the Carolinas, the local organ procurement office, also wants me to speak at a butterfly garden that is being dedicated at Union Regional medical center in honor of donors. I just think it is so awesome how God is giving me these platforms to share our story and how he has changed us through this. Sharing the Gospel, even in an indirect way like this is a true privilege
    I will try harder to update more frequently; even if it only to say that Cole is doing great.

April 24 -
You asked for it....you got it; an update! Finally! Basically, Cole is doing great! His ear is clear and he is acting great. He is, however, getting over some type of eye infection. The docs never saw Cole though so it was never identified as anything. I called them on Wednesday morning and described the symptoms...red and puffy right eye with some discharge. They told me to come by and pick up some sample eye drops. The drops seem to be doing the trick. Cole's eye is nearly clear, well...for all I know it may be totally clear. You see this weekend I have been a bachelor. Del went to the beach with some friends and she dropped the kids off at her parents for the weekend. Home alone!!
Cole's physical skills continue to improve. He is still not walking yet, but he is soooo close. The therapist seem to think he is holding himself back. Cole is just so fearful. He doesn't want to let go of your hand or whatever object he is using for balance. He has taken a few steps on his own, but for the most part he sits down or flops forward to get back to a stable position. Continued above...

March 22 -
In all it was a pretty good weekend. By Friday Cole had started to feel a lot better, and by Saturday he was laughing and smiling again. But by dinner Saturday evening Cole had a fever of 101 and was miserable. We weren't sure what to make of it. We thought he was over the rotavirus, but weren't quite sure. We ended up giving him a dose of Tylenol, something the transplant guys ask us to use sparingly, and within an hour was happy as can be. He had even been eating extremely well. The one thing we did notice was that he wasn't drinking a whole lot. Sunday afternoon came and he again woke up from his afternoon nap very fussy and appeared to be thirsty, but when he tried to drink he threw the bottle and began screaming. Del figured it could only be one thing...ear infection! Remember the last time he got an ear infection was about a month ago. The pediatrician informed us that the right ear tube, the one that was infected was out and laying in the canal. Well, Del called the ped Sunday afternoon and then brought Cole in. Sure enough the doc thought the ear was infected, but couldn't see the ear drum, because the tube was still in the canal and had a bunch of gunk around it. They wanted us to make an appointment with the ENT that put the tubes in. This morning Del called the ENT and we were told that the earliest they could see him was May 4th. No way!! Del put on the nice, but firm, mom attitude and told the person on the phone the deal. By God's grace, they had just received a cancellation and it was a perfect time for us to get him in. (wonder who would cancel with a 2 month waiting period!?) I dropped Anna off at wee school this morning and drove straight in to the ENT. It worked out perfectly. The doc cleaned out the gunk and pulled the tube and discovered that it was badly infected and he felt the ear drum was probably ruptured. However, he told me that a rupture really sounds worse than it is. The ear drum will heal! The doc began asking me a ton of questions. When did he start feeling bad? Has he been getting up in the night? On a scale of 1-10 how would you rate his level of discomfort? I wasn't sure how to answer any of his questions. Cole had just gotten over rotavirus, so he has felt pretty crappy for 12 days at least,....but was it related to the ear or the virus? Cole had been getting up through the night, but was it related to the ear or virus? I rated his discomfort as a 4 (10 being the worst), but again, the poor kid just got over being very very sick. So sick that he would move, but just lay there catatonic and scream when he moved. Was it the ear or the virus? A 4 seems like a low rating, but compared to how he had been acting I thought he felt much much better. Plus this kids pain tolerance has got to be through the roof, off the scale over the edge. Compared to most kids, and most adults for that matter, this little guy has seen far more pain in his short 20 month life. I tell you the truth...God is weaving together one TOUGH kid! I can see it now... Cole 14 years old, he comes casually strolling through the door, with his arm bent like a pretzel from a fall off his skateboard that happened an hour ago, not a tear in his eye and barely a grimace on his face, and first asks for a drink before we go to the hospital. OK, OK this is a huge exaggeration, and let's pray this doesn't happen, but he is going to be tough!
The docs have Cole on Omnicef oral antibiotic and Ciprodex drops. We have to go back to the ENT Friday to see if this is working. I asked the doc what the likelihood of Cole needed another set of tube and he told me low. Cole is getting bigger and we are nearly out of the ear infection season now. So we clear up this infection and see where God leads us.

March 17 -
    Well, it seems that Cole is a little worse today. This Roto virus has really kicked him hard. All day he was very listless and glum. The speech therapist came out this morning, a guy whom Cole usually really likes, but Cole wanted nothing but to cling to us. Cole didn't eat much today, and when he did it was quickly passed through. I must have changed 6 diapers by 11am. Also this evening he just laid on the floor in a catatonic like state. His eyes were open and he would just stare. Cole still seems to be drinking OK. Just today I got the bright idea to give him some pedialyte to give him a boost. He really sucked it down. I don't know why I didn't think of it before. So Del went out to the store and bought some more.
    Oh yeah! Del stayed home. It seems that last night I got struck with the same bug. I was up and on the pot all night. I felt very very sick, nauseous, cramping and achy. I can only imagine how Cole must feel. I literally laid on the couch nearly all afternoon. It hurt my stomach to move even the slightest. I guess this is kinda what Cole is doing when he is in his apparent catatonic state. It probably just hurts to move. The docs said the rotovirus is spread through contact with stool and I sure had my contact!!! Guess it was a matter of time. I just hope we both get over this fast and Del and Anna don't get it. Thank God Del was able to get someone to cover the meetings in Chicago for her. I don't know what I would have done. Especially tonight!! Cole vomited a lot! This was the first time that has happened. Previously it had all been from the other end. But agian this is roto virus. I was laying on the couch and Cole was laying on my chest. He had just finished his nighttime bottle. The first bit seemed like a little spit up. But the next bit was Niagara falls! Poor little guy. He was just so miserable. I was covered in it also. I yelled for Del and she scooped him up, cleaned him up and got him changed. I waddled upstairs to help with Anna. And when Cole was cleaned and dressed I tried to read him some books, but all he wanted was to roll over and sleep. I don't blame him one little bit. I am heading upstairs to do the same thing.
    We can still use your prayers. Prayers for a quick recovery for Cole and myself and protection for Del and Anna. We truly covet all of your prayers. Thank you. Now I MUST RUNNNNN!!!

March 16 -
    This time I unfortunately have something to write about. Cole has contracted Roto Virus. He started having diarrhea Friday night and by Saturday morning Cole was very sick. I knew something was wrong when he still wasn't awake by 8 am that morning. I always get a sinking feeling. In fact I don't even like to be the one to go in the room. I guess I am a big chicken and afraid of what I might find. Sure enough when Del went into his room Cole was covered in diarrhea and very red faced and listless. He was like a rag doll, just limp. His fever was only 100.6, but he was acting much sicker than that. We called the pediatricians office who told us we could either wait or bring him in. DUH!! We brought him in, and it was a good thing to because by the time Del got Cole there his fever was 102.5. ( I was doing the birthday circuit with Anna; 2 per Saturday) The doc thought it may be roto virus after she saw and smelled one of Cole's 11 diapers that morning. They then sent them to the hospital to get labs. Thank God Cole had been drinking water like a sponge or else they would have admitted Cole for fluids. Of course they would have had to stick him for an IV and that is a huge problem, which I will elaborate on a little later. Like we had expected Cole's labs, specifically his liver numbers were way up. By God's mercy, his H&H, platelets, and neutrophils were the best they had been in a long time. But his all but his bili numbers were up significantly. The docs in Cinci were informed and they want to just wait and see what happens. As with any virus it can affect the liver. They potential problem comes from a ramped up immune system. The immune system kinda gears up to fight the virus and then can potentially recognize the foreign liver and attack it. I am really not sure how this works or how likely it is to happen, but the threat exists. I believe it is more serious with kids who have very depressed immune systems, like cancer kids or bone marrow transplants. With most organ transplants, the immunosuppression meds the patient gets only targets a specific area of the immune system, unlike bone marrow for example which pretty much wipes out the immune system and starts over. The docs don't seem to worried now about the elevated numbers.
    Cole is still having very nasty and explosive diapers. I mean these things smell bad. The whole house stinks. We have the windows open and the fans going and still when you walk in it just stinks. I think the smell is making us all a little queasy. But nothing compared to how Cole feels. Saturday, he just was listless, Sunday, he improved his mood a little, Monday was a little worse than Sunday, and today was awful. Cole cried nearly the whole day. He just must feel terrible; and his little butt is very very red and irritated. I feel so bad wiping him. He just shakes with pain and screams. In fact I only do one gentle wipe and leave the rest behind (or on the behind). Please pray that Cole begins to feel better tomorrow. The docs say it could last 7 to 10 days. And to make matters worse, Del has to go out of town for work tomorrow and will be gone until Friday evening. These past few days we have needed both of us here to "clean up". Cole has wiped out his crib every morning, his changing table a couple of times a day, and his high chair once. And when I say wiped out I mean wiped out. Runny, green, foul smelling diarrhea. The kind that seeps into every crack and crevice. There, have I made you all nauseas as well? Now imagine me doing this by myself for 2 and a half days! Please pray for me as well. I am going to need it.
    Last Wednesday Cole had to go into the hospital for his monthly pentamadine infusion. It was a nightmare. The hospital was not as well prepared for us this time and sent us to the wrong floor. When I got there they didn't know who or what we were doing. The problem was that the clock was ticking... Cole needed his prograf (anti-rejection med) exactly at 10, but couldn't get that until he had labs drawn. The mix up with the room was putting us way behind. For once, probably in my life, I became assertive with the staff. I insisted that they figure this out...and fast. In the meantime I made an executive decision to skip finding the room and head straight for the lab. The folks at the lab are awesome and would get labs ASAP. My mom came with Cole and me that day, so I left her with the lab folks after I explained what was going on and what needed to happen, gave my mom the prograf to give immediately following the draw, then I went back down to admitting to sort this mess out. We were in the room by 10:30. However the problems didn't stop there. In a nutshell, they tried 7 times to start an IV, all failed. Cole was poked by 4 different people, in the arms, hands and feet. He was a little pin cushion. Each time the vein would blow or the catheter would not thread. The valves in Cole's tiny veins kept pinching the vein off. Guess his veins felt they had had enough as well. Cole screamed his head off every time. So much so that the little capillaries in his face were bursting. It looks like he has zits, but it is burst blood vessels from screaming for so long and so hard. The nurses and techs did the best they can, and I by no means fault them. In fact they would send one team in to try and when that failed we would wait an hour or so to calm him down. Cole is such a tough little guy. Within 10 minutes of being pinched and poked he was smiling and laughing. But then the next team would come in. This went on until about 2:30. At this point I once again asserted myself and said "Enough! We are going home!!" But the docs wanted to see if they could give the medicine through a shot rather than an IV. After conferring with the pharmacist, the docs here and in Cinci, it was decided to give an intramuscular shot. It is not the preferred way of administering the antibiotic, but it would do. Cole did great. He hardly cried. In fact he fell asleep shortly afterward. We still had to stay at the hospital while the nurse monitored vitals for an hour after the shot, but we were home by 5. It was a long day!! We went in for a scheduled one hour infusion and 7 1/2 hours later were home.
    So you can see why I am very very relieved Cole has not need to be admitted for IV fluids. They would have to start an IV!! and you see how easy that is!!
    But you know it seems like I have painted this bleak picture, but in fact Cole is doing very well overall. My parents were down for a visit and Cole was the happiest little guy ever. He laughed and played the entire time. And up until recently has been feeling and acting great. His labs also up until recently have been great. I haven't really had much to update about. Generally no news is good news as far as Cole. To put things in perspective, this is ONLY Roto virus. It does go away. Sure it is not a fun thing to have, nor a fun thing to deal with, but things could be much much worse. But we all could use some extra prayers. Del, Anna and myself could use prayers to keep us from contracting this bug. It is transmitted through contact with stool. So Del and I are most likely to get it. In fact, Del and myself have been feeling a little sick the past 2 days. Cole of course needs prayers for healing and continued good liver function. Our God is an awesome God!! Anna has been specifically praying for Cole's H&H, and neutrophils. She calls it his Heba globin. And it has really been a very sincere prayer. Well you can imagine her joy to find out that God directly answered her. Although now the discussion has come up that God will answer all of her prayers. A good discussion, but hard to explain to a 4 year old.

February 15 -
    Exactly one month since the last time I posted an update. I have been slack, haven't I? Basically Cole has been doing fantastic. On February 4 Cole had to go into the hospital to get an infusion of pentamadine. Pentamadine is an antibiotic Cole must take as a precaution against infection. It lasts a month and he will have to get it for the next several months. The bad part about it is he has to go into the hospital and get an IV. The medicine is pushed through over an hour while the nurse checks his vitals every 15 minutes. This time it went fairly smoothly. The room was ready for us when we got to the hospital. The nurse was waiting for us and got his preliminary things done quickly. We were ready for the IV around 10am. Unfortunately the IV team was busy and it took them 2 hours to get to Cole. That made the day very very long. The nurse got the IV in first try and the infusion went smoothly with no problems. We were home by about 3pm. Seemed a little long for a simple 1 hour infusion. But maybe next month will be quicker.
    From a developmental standpoint Cole is progressing well. Both speech and physical therapy are coming out twice a week. He is now cruising all over the place. In fact we had to put up gates at the stairs. He is also "combat crawling" pretty fast now. Combat crawling is when he is on his elbows and legs rather than his hands and knees. However we have seen him take a few crawling steps while up on all fours. The biggest thing the therapist is working with him is on the transitions between all the positions. From belly to butt, from butt to knees, from knees to standing, and then back in reverse. Cole gets very frustrated after a few minutes. He definitely has a little temper. He wants to play his way and his way only. It has been a challenge for the therapist or us to work with him for longer than 5 or 10 minutes. He throws his head back, flops on the floor and whines...The big Baby....
    Cole is also pushing his little doggy walker toy all over the place. He just hasn't figured out how to turn it, so when he runs it into the wall, we have to redirect it. It is funny, I have seen other kids much more inclined to work things out for themselves. Cole gets angry and gives up and waits for one of us to help. As a parent, I am not sure what to do. Should I let him fuss and try to figure it out on his own? If I try to simply encourage him by only partially helping he really gets mad. Sometimes I try not to let him see me. It seems as if he doesn't see me available, he has a stronger desire to work it out himself. But sometimes he just gets plain furious.
    His speech is also improving. He is babbling a lot more. In fact we thought he said cheese the other day. And he is just now doing, "UHH OHHH." When something falls. But the most irksome thing is he refuses to say DA DA. I can sit there, look him straight in the eye and tell him, "Say Da Da." And guess what he says? .....Ma Ma, and then gives me a smile. Its like the kid is toying with me already. I didn't think he would start trying to annoy me until his teen years, but it seems to be starting already. The reason I think he is toying with me is that we know he can say it, we have heard him. The little stinker, just wants to mess with me. It is cute though.....and funny. Not annoying enough to tell him, to say it or I'm taking my liver back....
    Cole also seems to be messing with us at dinner time. This little porker used to eat anything and everything....twice. Now he is getting to be Del-like; ie very picky. At lunch he will scarf a whole PBJ sandwich and then at dinner will refuse to eat anything but applesauce. We need to come up with a plan to make him eat whatever we are putting on the dinner table.
    Anna and Cole are also starting to get along better. Anna has actually claimed to teach him a bunch a things. She gets so excited when he does something she asks him to do. Even if it is as simple as holding a spoon. "Look daddy, I taught Cole how to hold a spoon!!" It is cute. However she and Cole have butted heads more than a few times. Especially in the tub. Guess it is because they are in close proximity to each other and neither can escape. One time Anna was playing with something Cole wanted. Cole started fussing so she gave it to him and started playing with something else. Cole then wanted that. He started screaming and splashing. Anna said, "Here! Take it! You're giving me a headache!!" Just wait till he gets more mobile and reaches out and takes her stuff!
    Cole's labs have been up and down. His liver function is still perfect. All his liver numbers are normal. His EBV level is also way way down, which is good. The numbers that seem to be jumping all around still are his H & H and Neutrophils. Also he had some more hemoccult cards analyzed and they are still showing some blood in his stool. Nobody really knows what to make of it.
    Friday, February 13, we flew up to Cinci for Cole's 6 month post transplant check-up. (Can you believe it has been 6 months already?!!) The docs were super pleased with Cole's progress. Cole has grown 8 cm (not sure what that calculates to in inches) since transplant and is now 23.5 lbs. They have taken him off 2 of his meds, the cipro and the fluconazole. One is an antibiotic and the other is an antifungal. The good news is that these medicines can be a possible explanation for his anemia (low H&H) as well as his neutropenia (low neutrophils). The mystery still remains as to the cause of the GI bleeding. It is still a very small amount, undetectable by eye. One possible explanation could be active EBV, but his numbers aren't showing that. Active EBV can cause ulcering. But remember Cole was scoped for this very thing back in November, and none was detected. My gut is telling me it is still a trickle from Cole's latest surgery. Remember Cole had to have the bile ducts totally reconnected in December. Del's brother in law, the general surgeon, told us it could take several months for ALL bleeding to stop and get out of his system. He was initially referring to the transplant, but I guess it could also be plausible to Cole's last major surgery as well. The docs up in Cinci don't want to speculate, but are just going to keep close tabs on things.
    The other good news is that Cole is now on only 5 meds. Every med has a potential harmful effect, so when even one med goes, we are happy people.
    The folks that flew us up to Cinci are with an organization called Children's Flight of Hope. It is a non-profit group that provides free air transport to kids needing medical treatment. They operate out of Raleigh, NC, but will fly anywhere within 600 miles. So they fly down here to Charlotte, Monroe Regional Airport really, pick us up and take us to Cinci. Wait there during Cole's appointment, then fly us back the same day. Do you know how much money that saves us? A ton. About $2500!! How awesome is that? Also, not only does it help us from a financial aspect, but from a logistical aspect as well. They are extremely helpful, getting us on and off the plane. And Cole does not have to be exposed to a hundred other people in close quarters on a plane, not to mention, being around thousands of other people at a large airport and scrutinized by airport security. It is a much safer way to transport Cole without exposing him to too many germs. I have put a link to CFH on the front page. If you have any questions about their program please contact them, they have flown us 3 separate occasions and have been awesome.
    In fact, News 14, a local cable news station, came out to the airport and did a follow-up report on Cole. The main thing we wanted to do was plug Children's Flight of Hope. And hopefully through Cole, they were able to get some donations or volunteers and also make the community aware of their terrific service. You know that is what I desire. I don't want this transplant and this ordeal to fade. I want it to be life altering. I know it has been from a salvation perspective. But I also want it to be life altering from a humanitarian aspect as well. Most of all I pray that God uses Cole and this situation to open doors for us to share the gospel with others, and by the Holy Spirit bring others to His Kingdom, but secondary to that I pray that it changes us to be better at serving the needs of others. God has truly been so awesome to us. I want the same grace and mercy, love and servitude that He showered on us to permeate through our souls and explode out to those around us.
    And finally I want to tell everyone that I will do my very best to update more frequently. Sometimes I do need a little push to set aside some time to update the goings on in Cole's life. He has touched so many, and so many are anxious to hear what is going on and how they can pray for Cole. I thank those of you that so sweetly kept reminding me to update, update, update. I had neglected the very same people who so fervently prayed for us in our desperate times. Sorry,....... and thank you for continuing to lift Cole and our family up.

January 15 -
    I know, I know, I am getting slack at these updates. Honestly, when things are going so well we either forget, don't have time or don't have a need to update this journal. Does this remind you of our relationship with God? It reminds me...a lot. It seems when things go well I don't spend my time in prayer or study of His word. Certainly makes me feel guilty!
    As for Cole, he is doing fantastic. Praise Report: Thank you God!!! Cole's labs, probably for the first time in his entire little life are normal. I don't just mean his liver numbers, I mean ALL his labs. His H and H is perfect, His liver numbers are perfect, His white blood cells are perfect (his neutrophils came up), his vitamin and mineral levels are perfect. And even his elusive prograf level is right smack in the middle of the target range. His EBV is also way down. Thank you, thank you Lord. So that's the great news.
    Since Cole does not have a line for lab access the lab has to stick him. Last weeks stick was rough. It took the tech 3 times to get blood. Both arms were unsuccessful and they were finally able to draw it out of his hand. This weeks stick was much better. Wayne, at the CMC lab, is awesome. When he is at the needle he gets Cole first time every time. Cole had to get an additional lab work last week as well. Our normal routine is to go in every Monday after I drop Anna off at school, but because of his neutrophil count they wanted to also get labs done on Friday. Thankfully, they were able to get enough blood for the few tests from a finger poke.
    Last week we had to give Cole several shots. When I say we, I really mean Del. I am a big chicken when it comes to giving him a shot. It was a shot to boost his neutrophils. The home health nurse came out and showed us how to do it. The needle is so tiny, and the amount of medicine is so small. The shot had to be given in a large area of fat. So Del would pinch a gathering of baby fat on Cole's leg, I would do a major distraction, like make a loud noise and funny face, and Del would jab it in. Cole really barely felt it, or at least that is what I keep telling myself. After everything we have been through, I just get the heebie jeebies when it comes to the shot. We had to administer the shot Tues, Wed, and Thurs. And check neutrophils on Friday. Thankfully, they were good and we have discontinued the shots for now.
    I guess the biggest thing going on in Cole's life right now is all the therapies. He is having one therapist or another come out to the house every day during the week. Monday and Wednesday a speech therapist (ST) works with Cole. Tuesday and Thursday a physical therapist (PT) works with him. And on Friday he is seen by an occupational therapist (OT). Before this I didn't know the difference between OT and PT. OT is fine motor skills like picking up things, holding a cup and spoon, things along those lines. PT is gross motor skills like walking, crawling and running. Ok, Ok, Cole is not really learning to run, but he will and when he does...look out here comes TANK. Cole is ALL boy already.
    The therapies have been amazing. I think Cole had scored out on various tests with delays in all areas except cognitive. He is smart, but just unable to move or communicate well. ST scored him at a 9 month old, PT scored him about the same, and OT puts him at about a 14 month old baby. Remember Cole is nearly 18 months old. The therapies have goals set. Some are longer term and some are weekly. Speech is working on sounds and abilities to communicate. The sounds are simple things like "babbaba, and dadada. " Cole is not really saying mama or dada to our dismay. He babbles a little, but it is not directed at anything. The communicative part is working on things like "where is your...", and "put the ball in..." and so on. In the last week Cole has made huge improvements in both areas of speech. He is babbling more, following directions much much better, and has even been able to point to two more body parts. He recently added ear to his former head, belly and foot repertoire. And just tonight he was able to point to his nose. Way to go little buddy!!!
    PT has also seen significant improvements. Cole is now able to crawl a little. It is more like a lunge. He doesn't have the upper body strength to keep his head up for long, but pushes and lunges himself forward with his legs. It is not pretty but somewhat effective. Also the therapist had me cut down the legs of a plastic kid chair. From there, Cole is able to pull himself up to a stand using an exercise step. He is also able to lower himself back down to a sitting position. The down part is more of a controlled crash, but he is becoming more graceful at it. Tonight he must have performed his stand up, sit down routine no fewer than 15 times in a row, clapping for himself each time. It was so adorable. Practice, practice, practice. He is also able to cruise a little. He holds on the the window sill, which is just the right height and steps sideways in both directions. Our homework for the weekend is to work on the transitional stages of getting from sitting to lying and standing to kneeling. The therapist says he has these scatter skills, where Cole's able to do things beyond his developmental level, but the problem comes when he falls he can't get back up, or when he sits he can't lay down. These skills are important to locomotive development. So in a sense Cole needs to go backward to go forward, figuratively.
    OT wasn't able to come out last week, but since Cole is not that far behind it really isn't a big deal. Although I don't expect we will see the dramatic improvements in OT skill like we have in the others. Developmentally, Cole was able to hold and do things with his hands while he was in the hospital.
    The only thing can really say is WOW!! God is so good! Thank you Lord! Thank you so much for the trials you have put us through. Thank you for your gracious and merciful hand upon our family. We put our trust in You and You alone. I am going to make a confession to you all. Before Cole was born, I was agnostic. I would have called myself spiritual. Sure I believed in God, but not so much in Jesus. Man let me tell you, that changed. And it changed in such a dramatic way that I know I will never, ever be the same again. The day of my conversion was like a lightning bolt. I was struck down hard. It was a day that started out so awful. I was having one of the worst days in my stay-at-home dad life. I won't go into the details now, but I had had it. But my mouth and my heart openly confessed to Jesus and I had the best, most warming feeling in my life. It was like I was immersed in a warm bath. I knew right then that I had the Holy Spirit within. I'll tell you this as sure as I know how. I didn't know God until I knew Jesus Christ. When I opened my heart to Him, right then and there, I knew I was different. For those of you that knew the old Dave, I think they can attest to a dramatic change that took place. I have had this fire burning within me ever since. I have been reading and studying the bible. I have become actively involved in church. It is not out of duty that I do these things. I don't do these things to believe, I go to church and read my bible because I believe. These "works," as they are often called come from the Faith that I have been given. It is a heart issue, I truly want to do these. I also want to share the Good News with everyone. Jesus is the way, the truth and the life. I'll also confess that sometimes the fire dies down a bit. Sometimes I don't even feel or act like a Christian. I think God gives us these little daily struggles to keep us humble and keep us ever swimming towards Jesus, ever wanting to be made more and more like Him...Perfect and sinless. I also know that when you know Jesus and have a personal relationship with Him, you realize just how far from God you really are. Jesus came to this earth from His heavenly seat with His Father to live a sinless, perfect life only to die on the cross a sinners death. And that death, that shedding of Jesus' perfect blood was to pay for my sins and your sins. Only through Jesus are we made right with God. How can anyone on this earth claim to live a sinless life? I sin daily, and I hate it. I get angry at my kids, I make judgments upon others, I have hate, I have envy, I have lustful thoughts. I am so far from the perfectness of God it seems unbridgeable. But it is! It is through the redeeming blood of Jesus. I used to say, "But I'm a good person." Now who was I comparing myself too? Hitler, Dahmer, Manson, the guy who was embezzling money, the guy who was cheating on his wife, or the guy who had a just cut me off in the car whom I just shot the bird too! I should only be comparing myself to the only true "plumb line" for holiness, Jesus, God himself.
    You know,.. before I became a Christian, I had the head knowledge. I knew why Jesus came here. I knew the story. I was reading the bible a little. I was even doing some "investigating" from outside sources to determine the validity of the bible. I was asking myself, "How can this be real? How in the world can this be true?" It was like a fairy tale, a long winded bedtime story I might make up to tell my daughter. But time and time again, my studies showed the grounds of the bible to be unshakeable. Even when my head knowledge concluded that "Hey, this is real!" I may have thought I was a Christian, but I wasn't. Things for me hadn't changed. My head knowledge hadn't lead to the power and glory of God I was looking for (or not looking for). I was going to church, doling along, believing the bible based on my research,... but nothing had changed... It wasn't until that awful day that became the most beautiful day; The day when I opened my heart to Jesus Christ and turned the controls over to Him. That is when everything made sense. That was the piece missing in my life. On that day I became a Christian, on that day I began my relationship with Jesus. And you all know what a wild ride we have been on... Sometimes I pray that it doesn't stop, because that keeps me longing for Him.
    There is Good News out there. Just turn your heart over to Jesus and see.. And remember you can't hide your heart from the maker of all things.

    The Lord is my witness that I have written the truth. I have written this because of the love I have for you all.

January 1 -
    Happy New Year!! First let me say I'm sorry for not updating the journal in 11 days. Quite frankly things have been going uneventfully. Uneventful is good in the Jackson household. This Christmas was the best I ever had. Not only did I experience only my second Christmas as a Christian, but God was so awesome to us.
    I'll start with where I left off last entry. On the 22 and 23 Del and I took turns shopping. We had done most of our Christmas shopping on the internet or while we were in Cinci. But we never got thing one for each other. We each took turns taking Anna out and spending the day with her shopping. Not only were these shopping excursions "training" Anna for womanhood, (she already loves to shop), but it gave both Del and I a chance to get back into Anna's life individually.
    Cole is doing fantastic. He is happy and playing. Although he is a little more demanding. He still will not really sit and play by himself. Some of this I think is the due to the fact that he was receiving so much attention in Cinci. He is not used to being playing alone. Some is probably due to being a little scared. He has gone through so much. And some of this is probably due to Cole being physically behind. He is cognitively on track. He knows what he wants, but he can't communicate with us, nor can he move over to get whatever it is. Can you imagine? It must be like being in a baby style straight jacket with a muzzle on. He is 18 months, but can't walk, crawl or even form simple words yet. Cole is being seen by a physical therapist, a occupational therapist and a speech therapist. So hopefully he will catch up soon. For now he throws some major baby tantrums, while pointing and grunting.
    Christmas eve was really nice. Anna had a low grade fever, so we decided it was best to skip church that evening. And of course Cole wasn't going to be going. The evenings are usually very hectic enough with both of us around. During regular Sunday morning service, we alternate between going to church and staying home with Cole. But Christmas eve, tending two kids, one of whom requires much more care would have over-burdened one of us. So we both stayed home. Our pastor had told us that he could stop by after the service and administer communion. It was very cool. The kids were in bed. Some of our neighbors came by who also go to our church. It was one of the highlights of the holiday. It was an intimate chance to celebrate the birth of our Lord and Savior, and worship Him.
    At about 9:30 that night Del and I started getting "Santa's presents" out. Santa doesn't wrap gifts in our house. It is less work on his elves;-) Anyway, we set up everything, sat back to relax and the phone rang. Our neighbor needed some help assembling a gift. Apparently Santa's elves waited til the last minute to build a big activity table. Del ran upstairs to get a jacket, when who should she see standing at the top of the steps. No....it wasn't Santa! It was Anna! That little stinker was standing there waiting to see if Santa had come yet. We were nearly busted. Can you imagine if she had come downstairs? We would have had a lot of explaining to do. Del told Anna to get back in bed and Santa wouldn't come until we were asleep. Being the smart cookie that she is Anna said in a sassy mother-like voice, "Mommy! Then you need to get in bed this instant!" After a brief lecture about attitude and who makes the rules, Del and I had to laugh a bit.
    Christmas morning was everything I had hoped. Anna came flying down the stairs and gasped at the art easel and other toys Santa had brought. Cole also was excited. Cole seemed much more enthusiastic than Anna was at his age. Cole took the time to look, smile and play with all the toys before moving on. Anna, as I remember, would tear from one toy to another, hardly slowing down in between. Anna would even be more interested in the box and paper on some gifts. I know Christmas isn't about toys, packages, boxes or bags, but to see the look on your child's face Christmas morning is truly priceless.
    The next few days were relatively uneventful. Cole finished up his IV meds on the 26th. He was getting gancylovir every 12 hours. Neupogen 3 times a week and he even got another dose of cytogam. The gancyclovir and neupogen we could administer. It is just a matter of scrubbing on to Cole's central line and hooking up the pump. The cytogam is a blood product and has to be given by a nurse. Friday night a home health nurse came out to give Cole his cytogam. Before she got there we pre-medicated Cole with benadryl and tylenol to ward off any discomfort the med might cause. Then Cole went to bed for the night. The medicine needed to be given over about 4 hours and it required that the nurse sneak in to check vitals every 15 minutes for the first hour, every 30 minutes the next hour, then hourly. The poor nurse didn't leave until 11pm. Cole did great and never woke up. The benefit of sleeping months in a hospital is being able to sleep through a bomb blast.
    Cole labs this Monday were awesome. His liver numbers are perfect. He is still having issues with his neutrophils though. The are once again low. Remember neutrophils are a a component of the white blood cell. They are produced in the bone marrow and are the first and primary defenders against bacteria. It is probable that Cole's bone marrow hasn't kicked in to high gear yet. In a healthy individual, the body is constantly struggling to keep nuetrophil production up, and in Cole's case the marrow needs to work overtime. The docs tell us it may be months before we see Cole's neutrophils stabilizing.
    The best news though is that on Tuesday, Cole got his C-line pulled. The c-line was a three port line in his right clavicle area. We had used it to administer the IV meds as well as draw blood from. The transplant team has removed Cole from all his IV meds and is now requiring lab draws only once a week. So the home health nurse came out and pulled the line. Cole did great for the most part. He still didn't like being held down for the ten minutes of direct pressure to the site, but really who would. The bad thing about the line being gone is Cole will have to get stuck once a week for blood. We will need to take him into the hospital for that. Because of the timing of arriving at the hospital for these labs, we have moved his prograf (anti-rejection med) dose time to10am. He needs to get blood taken immediately before given the prograf. This gives the docs a true trough of the amount of med in Cole's system. This is critical to determine the proper dose. Before, he was being given his prograf at 8am, but that just wouldn't work on lab days and we need to be consistent. Cole still is only getting his anti-rejection medicine once a day. His body is keeping it around longer than most kids who get it twice a day.
    The other bad thing about the line being removed is he will have to get stuck for meds. The transplant team is deciding if they need to give him more neupogen. This will be given in a sub-coetaneous shot. They even told us the home health folks may teach us to give the shot, if they feel the neupogen will be a regular thing for a while. I don't know...giving my son an injection doesn't sound like something I would be interested in. Just thinking about me pushing a needle, piercing the flesh of my son gives me the heeby jeebies. But if it comes down to that.........well......maybe Del could do it:-) Joking of course, I'll do it if I have to.
    All in all 2003 has been a wild year. I must admit it has been an awesome year. We have seen God's grace with the strengthening of our family and Faith. We have seen God's mercy, through the miraculous transplant and subsequent healing of Cole. We have seen God's glory through the amount of witnessing we have been given. One thing is for sure, God is using this to shape us into the Christ-like people He wants us to be. My only prayer is that our current and future shaping doesn't involve pain for Cole. Please continue to pray for Cole. We still have several outstanding issues. The most current is the neutrophils. Cole needs prayers for his bone marrow to start to produce these and other red blood cell components. Cole also needs continued prayer for his EBV to be kept under control and not become cancerous. Our Lord has been good to us and whatever the outcome He will continue to receive all His due glory.
    Have a safe and happy New Year. We love you all.

December 21 -
    Home Home Home. We made it! Home, Can you tell I am excited? We made it home Saturday evening. Sorry I didn't update yesterday, but we had so much to do. I think there was more mail in the 3 weeks we were gone than the entire 7 1/2 weeks at transplant. So many Christmas cards made the stack enormous. Anyway, I am home. Unfortunately Del and Cole are actually two doors away still. They are staying at a neighbors until Monday. These are different neighbors than we thought they would be staying with. These are the Moellers, friends who keep this website up and running. They are out of town and have small kids, so they already had a set-up of baby stuff for them to use. Cole continues to do great. He is playing and happy, except when he gets his diaper changed. He still has major league fire butt. The magic butt cream is working real slowly this time.
    Del was struggling a bit. It has certainly been a somewhat hollow homecoming. She has to stay and take care of Cole, and really keep her distance from Anna. It has been very painful for Del to do that. When we first drove up, I stayed in the car while Del went in to play with Anna for about 20 minutes. Del had to be masked and gloved. Anna was a bit confused and seemed aloof to Del. She really didn't want to play much with Del. It really hurt Del's feelings. I told Del that Anna is just frustrated and that she would soon get over whatever hang-up she has. Today Del came over during Cole's morning nap to play with Anna again. Anna seems to be getting a little better, but she still is definitely confused. Anna has been very testy to my mom and dad (grandma and grandpop). She cries or whines and seems to want either me or mommy around, but when we get there she goes right back to grandma. It has been frustrating for all of us. Thank God we can all be in the same house tomorrow.
    The plan is for Grandma and Grandpop to leave around noon tomorrow, They want to see Cole and interact with him at a distance. To this point they have only seen him through the car window. That has got to be hard on them as well. It is just they may be infected, and we can't take a chance. They are showing no signs of being sick, but we still have a day or so left in the incubation period of this flu. So we are not risking it. They are going to head home right after we exchange presents. It sure will be interesting. We are all going to be wearing masks while we give gifts. Del wants to keep Cole in his bubble stroller, but I don't think he'll just sit there while people are unwrapping things. There will be too many things he'll want to touch and get into. So we'll see how this goes tomorrow. Tomorrow we can be a family under the same roof again. But we will still keep Anna at a distance from Cole. Please pray that she doesn't feel neglected or in some way the cause of Cole's sickness. It is frustrating also for us to do this to Anna. I want her to bond with her brother, but she can't get near him. Hopefully she will eventually.
        Del's mom now believes she has the flu. She had been keeping Anna during her most contagious time. Susan has a fever and has been feeling pretty sick since Saturday. Hopefully it will quickly pass and she will be 100% soon. What this unfortunately means is that we won't be spending Christmas with them either. It is shaping up to be a Christmas with no family other than the Jackson four. What a wacky time this is!
    We also came home to our house decorated. Some friends came over and strung some lights up. It really looked great. They had done the bushes and the trees. Today I spent some time and added a few more lights . It is almost as many lights as I usually put up, I usually put up somewhere around 20,000 lights. Call me crazy, but I love Christmas.

We didn’t actually make it home as planned. We are still in Cinc. This morning I woke up to snow outside the window. I had anticipated bad weather so the night before I got the 800 numbers for all the states between here and Charlotte. I called all the numbers this morning. The only place that seemed like it would be a problem was through the Asheville area. They were calling for snow and ice throughout the day. I figured that it was no big deal I could make it.

I proceeded to finish packing and cleaning up the room at RMH. I had the luggage cart packed, and was doing the last walk through when the phone rang. It was Del. She said, “You haven’t checked out of the room have you?” Cole had just vomited his entire breakfast… They were unsure if we were going to be able to go home today. Del also said Cole looked a little flushed, but didn’t have a fever.

The docs told us it would be better if we stay around for another 24 hours, but we could leave if we wanted. We decided that once again God was sending us signs not to go home today. The bad weather and the potential questionable health of Cole were enough to keep us here another day. The docs said they didn’t think Cole’s vomiting amounted to anything of concern. Apparently he threw up after Del squirted some medicine down his throat. He kinda gagged a little and then…..RALPHHHHH! The docs told us we could all go back to RMH until tomorrow, but we decided to stay here at the hospital. It would have been more difficult to arrange home health to come out to RMH for a single day than to simply carry on business as usual here at the hospital.
It is a very good thing we stayed around today. We heard that Asheville was getting slammed with snow and I40 was snow covered and slick. God’s providence kept us here again. Can you imagine the problem if we got stranded somewhere? Even if we made it to a hotel, Cole would have to get his IV antibiotics. This would be impossible without the meds or a pump. We don’t know if it we would have made it or not, but we know that God works ALL things for good…someway and somehow, even when it is not readily apparent.

Anyway, Cole has done awesome today. He has been eating like a champ….and keeping it down. The nutritionist thinks his tummy is a little freaked out still, like mine was after surgery. Her advice is smaller meals more frequently. Cole has lost about 1 ½ pounds since he has been here. But the nutritionist is confident Cole will catch up. He certainly met his caloric goals today. Other than a “fire butt” Cole is doing great. I mean this kid has FIRE BUTT. He screams his head off when he has a bad diaper. Once again we are relying on magic butt cream to do the fix. Remember, magic butt cream is the actual name of a prescription diaper rash ointment. It worked it “magic” last time we were here and we hope it works this time.

Since we were still here the docs wanted Cole to get a hearing test. Many of the antibiotics Cole is on can damage his hearing. Cole did great. He was in a great mood for the test and the test indicated Cole’s hearing is normal.

It looks like we are heading home tomorrow morning. They are going to try to discharge us around 8:30am. The plan is that I am going to stay at RMH to get a good night sleep and besides…it’s my turn to get some decent sleep. Then I’ll swing by the hospital, pick them up, and go. Now that I think about it, that’s how we left Charlotte too. The one possible hold up may be the weather. It is supposed to snow from Cinci to Asheville tomorrow. ARGHHH!! Guess we will just pray about it, wake up, and see what happens. The forecast looks like the temp will be just above freezing, so I’m thinking the roads will probably be clear. At least that is what I am hoping. One thing is for sure, I wont be making the trip in the record 7 ½ hours like I did coming up here.

When we get back to Charlotte the docs want Cole and Anna to be completely separated, at least until Monday. The want everyone who has been in direct contact to stay away from him as well. We have come up with a plan when we get home. Del called our neighbors across the street and asked them if she and Cole could stay there, at least for a night. The Moffits are a wonderful family. They have been so gracious to us. They have been intimately involved in every fundraising event and have been so supportive to us. Several other wonderful families have graciously offered their home to us as well, but the Moffits are literally across the street. Del can still run over and see Anna while Cole is napping, or run over and get things that see needs. It is just a very convenient location. Also the Moffits kids are older. One is away at college and the other is a junior in high school. This is acceptable to the transplant guys. Any family with kids is out of the question as far as they are concerned.

I will be staying at our house with my parents and Anna. I’ll be able to visit Cole as long as I wear a mask around him. They also want me to wear a mask when I am in close proximity to Anna as well as my parents who have been exposed to Anna’s flu during the very contagious period. They don’t want me to be get this bad bug. Del will still be able to see Anna as long as she wears a mask and gloves. She will wear gloves because she will be directly in contact with Cole. This is going to be a very interesting weekend. It may look like an epidemic has hit Hunter Oaks Gracefield. I am surprised we wont be in bubble suits. They are taking this flu thing very very seriously. Remember the flu in a transplant kid can lead to rejection of the organ. Besides the flu this year is pretty bad. I heard an 11-month-old baby died here at Children’s two days ago due to the flu.

We only have to be this cautious until Monday. At that point we will just observe the normal hygienic precautions like hand washing. Also Monday will be the first time we will all be together under the same roof in over a month. Thank you Lord.

We need prayers for safe travel tomorrow. We also need prayers for a huge protective umbrella to shield us all from the flu, especially Cole. If we got the flu it would just mean quarantine from Cole, but if Cole got it it would be much more serious.

Ya’ll ready for this…..Anna has the flu!!! Plus a bad ear infection. My mom and dad drove down to Charlotte today. They are taking over for Del’s mom. Anna still had a fever of 102 and that was with Motrin. She took her into our pediatrician where he did a rapid flu test and determined she has a flu virus. The test doesn’t determine whether it is A or B strain. He prescribed amoxycillin for Anna’s ear infection and wrote scripts for Tamiflu for my parents to use as a prophylactic. He then called us directly in Cole’s room. It really pays to have your kids’ pediatrician be a friend. Art Spell with Charlotte Pediatrics has been one of the biggest and best advocates for Cole. He was a big influence in getting Cole’s Kasai performed expeditiously by a renowned surgeon at Johns Hopkins. We really owe a great deal to Dr Spell.

Anyway, Dr Spell knew that Anna having the flu would be a big issue with bringing Cole home. And it is. After we got off the phone with him we had the attending GI here at Cinci paged. Dr Kathy Campbell, who is a wonderful doctor and person, came up to our room to talk to us. Dr Campbell is so nice. She gets along great with Cole and tonight, for the first time, Cole actually shook his head “no” and “yes” when she asked him a question. That was very cool to see. Cole was in a fantastic mood. He was laughing and playing with Dr Campbell and she was playing right back with him. You can tell she just loves these kids.

She didn’t have a good plan for us when we get home. The big liver rounds are tomorrow and they will discuss the situation as a team and come up with a plan for us. They may have us wear masks around Anna, or Anna around Cole. They may decide it is better for Anna to go to Del’s parents house in Columbia or us to take Cole somewhere. They may say we should stay here for a few more days or they may just say take normal hand washing precautions. We just don’t know what to expect. The big rounds tomorrow will consist of all the liver GI’s, transplant surgeons, coordinators, fellows, residents, and staff of the liver team. What a tremendous think-tank! They will come up with an appropriate plan. Dr Campbell is going to start Del and me on Tamiflu as well. She said this drug should protect us pretty good against getting the flu. The big problem is what to do with Cole. The team needs to decide if Cole can take Tamiflu or another type of anti-viral.

I guess I should explain the big deal about the flu. The flu basically sticks around for a while. From the first day of the fever, the doctors say the third and fourth days are the most contagious time. The virus’ virility drops every day after that. But can still remain contagious about 10 days out. Well, 10 days puts the contagious window to Christmas Eve. What a bummer!! The big deal for Cole is that he is immunosuppressed. Since his immune system is low, he is more apt to get the flu. And if he gets the flu his body will naturally ramp up his immune system in order to fight the virus. When Cole’s immune system becomes too active, it can recognize the “foreign” liver and start attacking it. This is rejection. If Cole were to get the flu, he would be hospitalized for a long time on anti-viral meds, and his liver function would be carefully watched.

Dr Spell was funny on the phone. He said I got some good news and some bad news. The good news is Anna has an ear infection; the bad news is she has the flu. I said, “You’re kidding! You are kidding aren’t you?”

I told Del and then I actually started laughing. It wasn’t funny, but it was kinda. I mean what next? I really shouldn’t say that cause things could be significantly worse. We are just thankful for the many many blessings
God has provided.

Think about it. Del felt God was steering her away from going home to Charlotte on Monday. Can you imagine if Del went home? She would not have been able to come back…at all!! Then she may not have been allowed to be around Cole even when he got home. Only God’s providence kept Del from boarding that plane. Or can you imagine if we got home and then Anna got the flu? That would have directly exposed Cole to the flu. Once again God’s providence kept us here. I’ll tell you, His plan is perfect, even when we don’t see all the parts. God has been so awesome to us. He has continued to shower us with His grace and mercy.

We can obviously use more prayers. Pray that Anna gets better quickly. Pray that my in-laws, parents and aunt, who all have taken care of Anna this past week, don’t get the flu. Pray that we can still come home. Pray that Cole doesn’t come down with the flu. We need God’s protection for sure.

This could be a Christmas morning with all of us wearing masks or some kind of bubble suit, but we will have a good Christmas; whatever the place or however it unfolds. It is a day to celebrate the birth of our Lord and Savior, and nothing can stop that! I really get the feeling God wants us to remember that point, don’t you?

Today was interesting. Del had planned to fly back home to Charlotte to spend a few days with Anna. At 10am the shuttle came to pick up Del to take her to the airport to catch an 11:30 flight. The Caring Network here is awesome. They arrange transportation at no charge to various places. They also give discounted rates to participating hotels, and other places like the zoo and aquarium. This medical center is so geared toward kids. They seem to bend over backwards to help families and provide as normal a life as they can.

Anyway, back to Del’s planned trip. Once she got to the airport she learned her flight was delayed 2 hours. She sat in the airport and called her mom who was going to drive from her home in Columbia with Anna and pick Del up. Her mom told Del that Anna had a fever of 102. Oh No! Anna had a slightly runny nose and slight cough in the last few days. Del called me at the hospital and asked me to ask a doctor what they thought she should do. I talked to the attending GI and the fellow, who said the same thing - that there really was no good answer as to what Del should do. They said they couldn’t tell Del to cancel her plans, but they did give several options. Del could go back home, and stay there until Cole was discharged. She could wear a mask around Anna. If nothing developed she would be OK. Or she could wear a mask when she came back to the hospital, at least for a few days to rule out Del carrying anything. The big fear is that Anna’s fever turn into the flu. That would mean quarantine from Cole. And if Del were also exposed to the flu, she too would be at risk to get it and give it to Cole.

Next thing I know Del calls me and says she has canceled the flight and is on her way back to the hospital. She said it just wasn’t worth the risk. Not that she didn’t want to see Anna, but if she passed the flu onto Cole that would mean he would be in the hospital for a lot longer. Even if it just amounted to a virus, it could get to Cole and that too would mean hospitalization. The plan is to just watch Anna from here in Cinci and see what this fever turns into. We will deal with whatever comes up. More than likely it is just a passing virus. And hopefully by the time we get home it will be gone. But we just can’t take the chance. This must be disappointing for Anna. She was looking forward to picking mommy up at the airport and spending some QT with mom. They were even going to go see Brother Bear together.

Cole has been doing pretty good today. He woke up a little upset, but he took a 6-ounce bottle. Unfortunately an hour later he threw it up. The docs think he is just trying to eat too much too soon. Cole even found some of his old playful self. He was lying on his back in his crib, playing. He was using his feet to lift up some toy trucks. It was very good to see him smiling like that. He also ate about a dozen pretzels. That’s my pretzel boy. He did end up getting fussy again though. It seems he can only go about 5 or 6 hours without pain medicine. For a late lunch he ended up eating a half of a grilled cheese sandwich. This evening he also took about 4 ounces of milk, a few bites of pizza, and some applesauce. Unfortunately, around 8pm we had to give him some more medications by mouth, and about 2 minutes after he vomited. The docs say the only thing holding us back now is Cole’s eating. He needs to pick up the amount and frequency. He is not getting the needed calories, so they have ordered TPN, which is an IV nutritional supplement. This will probably only be administered tonight. I have a feeling Cole is going to step up his eating tomorrow.

So today was a good and relatively uneventful day. Uneventful, for us, is always good. We have a renewed sense of strength. I admit I was feeling down and drained the last few days, but it looks like we are over the hump and the other h word “HOME” (dare I say it) is in sight.

We still need prayers. Please pray for Anna. Pray for understanding beyond her years. Pray for her to quickly overcome this sickness. Pray for Cole to start eating better. And pray for us to get home soon.

Cole had a better day today. He only cracked one smile all day, but we’ll take it. The docs decided to just watch his c-line. The transplant surgeon himself came up and looked at it. He echoed what I said in my entry last night. He thought it might be the fluid leaking out of his body rather than a leak in the line itself.

Cole’s fluid has really gone down a lot. His face, hands and feet are back to normal, but his belly still has some to go. Cole got another round of albumin, and two more rounds of Lasix. He really peed like a racehorse. Not only did his urine output increase, but Cole’s JP drainage has really picked up. Shortly after the Lasix, the nurse took 90cc’s out of the grenade like drain. Then about 20 minutes later she pulled another 50cc’s out. The doctor said that the Lasix itself wasn’t causing the fluid to drain out of Cole’s belly. The fact was that the fluid in his body was pressurizing the surgical area, limiting the drains function. Once the fluid was relieved, the pressure went down, and the drain started really working.

Cole still isn’t eating very well though. He has refused the bottle since the operation. We have been wondering if one of the medicines is altering the flavor of the milk. Cole starts out like he is ravenous for the bottle. He’ll only take a few sips and then throw the bottle down. Cole has done a little better with food. Del fed him a few ounces of yogurt this afternoon while I was at the RMH. When I got back our friends the Sudmans were there. We chatted for a while, then I had the suggestion to get Cole up and have Del hold him in her lap. The doctor wants us to get him up more and more. Well, I guess Cole wasn’t quite ready to get up yet. He barfed all over Del. He vomited on her shirt and pants. What a mess.

Del is planning to leave tomorrow to spend 2 nights at home with Anna. Cole has been rather clingy to Del these days (well, that’s nothing new). But the next few days are going to be just the guys – beer, football, and about 20 women just outside the door. Okay, well maybe more like water, Veggie tales, and 20 nurses just outside the door. Either way, it should be a good bonding experience for Daddy and son. But please pray that Del gets home and then back to the hospital on Wednesday safely.

Well the day didn’t go like we had hoped. Cole had a very restless night. He just couldn’t get comfortable. And his oxygen saturation kept falling below 90, the minimum to make the alarms go off. Del and I had to wake up and reposition Cole’s canula. A canula is a little tube that is forked and goes up both nostrils. Oxygen is pumped through the tube and this helps to saturate Cole’s blood with needed oxygen. Cole hates it. He pulls on it and rips it out. We have taped it to his face but even then he pulls it out. So we found that if the tubes are about a half an inch from being actually in his nostrils, he doesn’t mind it and it gives him enough blow by oxygen to keep his saturation level elevated. So between the normal pumps, the monitors for the oxygen, and the constant readjusting of the canula, we didn’t get much sleep. We were pooped.

At around 8 am Cole was up and ready to stay up. That is when doctors and nurses start coming in to do rounds, take vitals, and draw blood. After that who could really go back to sleep. However, we noticed that Cole was very puffy and bloated in the face. We thought it was normal sleep induced swelling. But as the morning went on Cole’s swelling got worse. So bad that his left eye was nearly swollen shut. He looked like Sylvester Stallone in Rocky. I kept joking and saying, “Just cut me Mick!” But this was nothing really to be joking about. Several doctors came in to look at Cole. They kicked around the idea of a reaction to a new IV med they had just started giving him. But after discussing the docs decided it was most probably, “third spacing.” This is fluid that is shifting around in the body. Cole had been given so much fluid over the past several days and we noticed his hand and feet were swollen. And today they were fine and it was his face and belly that were now swollen. Third spacing is the shifting of this fluid. So the plan was the same as the other day. They would first give him albumin because his albumin is still very low. This will again draw the fluid into the cells. Then they would give him Lasix, which would help Cole pee it off.

By the time they got around to getting the meds up and ready, Cole’s belly was like an overblown balloon. It was still soft, but distended and very very full. The first dose worked, but it wasn’t enough. After the second dose, Cole started to become more comfortable. His eye is now nearly completely opened. I think they will give him some more either through the night or tomorrow for sure. When he went to bed tonight he was still pretty full in the belly.

Cole’s mood today was pretty poor as well. He cried a lot. He was just so miserable with the all the fluid in his body. Today was actually worse than yesterday. It was very discouraging to see him get worse. We had such high hopes for today. We thought today would have been the turning day in Cole’s recovery. It was far from that.

Issue boy also had another issue. His central line is leaking. Remember, Cole has a central line in his right clavical area. This c-line has three ports or lumens. Cole has been itching a lot, probably due to the morphine. (I’ll come back to this) Anyway, he ended up scratching off the dressing that is on top of the c-line entry point. When we went to investigate further we noticed the dressing was soaking wet. We called the nurse who, along with some help, did an experiment to try to figure out where and from what lumen it was leaking. They flushed each line and watch the site. They determined that two of the three were leaking. They called up the surgery resident who looked at it and decided that it would be ok for now. We would just access the one good lumen and wait and see what happens with the other two. There is a chance that the massive fluid build-up in Cole’s body may just be seeping out of the sight when those two lumens are being used. They want to see if it still happens when Cole’s swelling goes down.

Now for the itching. Cole has been itching a lot lately. The docs think the morphine may be the cause, so they have discontinued the morphine and are now giving him Tylenol with codeine. It didn’t seem to be doing much throughout the day. I think Cole was just so miserable with the fluid that the Tylenol didn’t even put a dent in his discomfort. But tonight, after he settled down and some of the swelling had gone down, it took just enough edge off for him to fall right to sleep.

On top of this trying day, we have seen another tragic story unfold. A little 10-month-old boy a few doors down started having trouble during the night. He was rushed upstairs to the ICU. This little guy had a different liver disease than Cole. His disease was called Alpha 1. It had progressed to the point that he was in desperate need of a liver transplant. He had been listed status one, which meant the first suitable liver in the area was his. But none had come available. This morning we learned that he was coding upstairs, and the entire staff of doctors, GI, PICU, and surgery were working feverishly on the baby boy. Once again I found myself on my knees. I get the feeling this is how God wants me, on my knees. A short time later we learned that the Lord called this little boy to Him. It was a very sad day for everyone around here. I was sad also, but not for the baby. I know were he is, but for his family. I don’t know if they are Christians, in fact I have never met them. But I can’t imagine what they must be going through if they are not. Imagine the void in their lives at both the loss of their only child and the hopelessness they must be facing. Please pray for this little guy’s family. This little boy had been in and out of this hospital so many times. The nurses and doctors loved this little boy, but God loved him more. This only added to our feeling mild depressed. First Cole takes a step back and now we lose a liver kid. It was a day that represented the day’s weather, wet and cold. Why does God answers one prayer and not another. Why does He heal one baby and not another? I haven’t got the foggiest idea why. But I can say that God knows why? I have seen polar opposites in these few weeks, and both are somehow part of God’s perfect plan.

We did get a brighter evening though. I went to RMH to pick up dinner. People and groups cook dinner for all 150 guests. Some days all the meals are prepared by volunteers. The RMH has a book that contains the schedule of groups bringing dinner. I kid you not, they have dinners being served every night for months. What a testimony to the wonderful servitude of others. Anyway, when I got back Cole was sitting in mommies lap, looking great. He wasn’t exactly smiling, but his face didn’t look very puffy and he was not crying. That was good. He even managed to eat a little mac and cheese followed by some yogurt. This was the first thing he has eaten since Tuesday. That is so good to see. God willing we may be seeing the turn around we have been hoping for tomorrow. So the day ended good. I was frantically jumping around acting like a silly daddy, trying to get a smile from Cole. Oh well, maybe tomorrow.

Last night was better than the night before and today was better than yesterday. It seems that tomorrow will be better than both. Cole is still in pain, but he was more awake and alert today. They have lowered his dose of morphine and we haven’t been giving it to him as frequently. Cole still has been refusing a bottle. He simply pushes it away. Prior to this surgery Cole had been devouring pretzels. We had been calling him pretzel boy. (he has many nicknames, pretzel boy, issue boy, mamma’s boy) Anyway, we tried to give him pretzels, but he only ate one pretzel. The docs say don’t worry about it. He is still getting all he needs through Ivs, and it only has been 2 days since he had major surgery. The doctors are predicting that tomorrow Cole will start turning around.

The biggest thing of the day is Cole has had very low potassium. They have since given him about 4 different potassium supplements. Two boluses of potassium chloride, one bolus of potassium phosphorus, one bag of potassium chloride, and one bag of potassium phosphorus. I guess we can start calling him potassium boy too. Or maybe just medicine boy. He is getting no fewer than 21 IV meds, Gentamycin 3 times a day, Zosyn 4 times a day, Vancomycin 4 times a day, Gancyclovir 2 times a day and those are just his regular daily meds. He has gotten potassium 2 times today, cytogam 1 times today, benadryl 1 time today, Lasix 1 time today, Zantac 1 time today, albumin 1 time today, and fluconozole 1 time today. This does not count the 5 or six times he has gotten morphine today. And those are just the meds he gets through his IV. Orally he gets, magnesium oxide 2 times a day, Iron 2 times a day, actigall 4 times a day, prograf, prednisone, and norvasc once a day. I think he can certainly have the nickname “medicine boy.” When the nurse comes in to deliver his daily meds I think she uses a shopping bag. Believe it or not we can even tell you when he gets these and what they are for. I know our medical degrees should be coming in the mail any day now.

The doctors are playing a little catch up on Cole’s electrolytes. He is also going to be adding Calcium carbonate to his list of IV meds. Cole’s calcium is a bit low. This is all due to his surgery. They just need to help him build his stores back up.

Also of concern for the day is his right arm. It is still swollen from the two different lines in the artery. He had the PICC recently removed from that arm and he still has the c-line in the same area. We think we have observed the arm becoming more swollen when the IV is being used to push more than one medicine. The doctor wants us, and the nurses to keep closer tabs on this. If it continues or gets worse, they may ultrasound the arm to make sure the artery is not obstructed. The thinking is that the since both lines were accessing the same artery they may have limited the flow of blood heading out of the arm. We will just keep an eye on it tonight and tomorrow.

Both Del and I have gotten to hold Cole. The surgeon has been telling us that it is good for Cole’s physical and emotional recovery, not to mention how good it makes us feel. It is still painful for Cole to be moved. But we do the best we can and once we get seated and rocking Cole really settles down. Cole also has been able to watch a lot of videos today. He watches for a while then drifts off to sleep.

God is answering our prayers for Cole’s healing. We will be praying he continues to heal. And praying that this is the last surgery and medical issue Cole will be dealing with.

December 11 –

Last night was pretty rough. Cole was in a great deal of pain. He was very restless and even managed to cry out several times during the night. His heart rate was around 200 bpm and his respirations were around 60. The resident doctor finally raised his morphine dose to 2.5 mg, and he settled down around 1am. But monitors and pumps kept going off all night. Also Cole’s breathing was very noisy and labored. It was like he was very stuffed up. He also had a fairly high fever, around 103.6. It was a very sleepless night for us all.

The staff here at Children’s is awesome. The nurses are wonderful and will really do all they can to help. In a very real sense, they are advocates for the child. The resident that has been over Cole’s care has been awesome. She came in several times last night to check on how he was doing. Even the anesthesiologist called several times from his home to see how Cole was doing. This shows just how caring this group of people is.

This morning Cole seemed to be much more comfortable. His respirations and heart rate were down to 35 and 145. Although he still is in pain and cries out every now and then he is better than he was last night. Once the nurse pulled Cole’s NG tube his funny breathing stopped. The tube they had put down was huge. It was not only to put things down, but also to pull gas and fluid out, so it had to be big. It must have been clogging Cole up all night. When the nurse pulled it, it definitely had some mucus on it. Also to come out of Cole was his PICC line. The doctors had put in a central line in his right clavicle area during the surgery, so there is no longer need for the PICC. The doctor said we could go home with this c-line if we need to. Also Cole got his catheter pulled. Usually they like to wait a little later to get the catheter out, but it was somehow leaking and very little was going into Cole’s bag. The doctors are carefully measuring his input and compare it with his output. The bag was helpful for this, but now the nurses will just have to weigh the diapers.

This is the biggest problem Cole is having now. He is retaining a lot of fluid. He looks like a little marshmallow baby. His face is so puffy. But his hands, arms, feet and legs are worse. The fluid was just floating around in his body. The doctors gave him a dose of albumin since Cole’s level was really low. This is a protein found in the blood. It can help pull this fluid into the cells of Cole’s body. They then gave him a dose of lasix. This is a diuretic that will help Cole pee off the fluid. Hopefully this will work. We also may attribute some of the puffiness to the fact that Cole has been very still for more than 24 hours. He is just now starting to move his arms a little. Also to help with Cole’s stiff and puffy extremities, we called some of the holistic medicine folks to come over and do their thing. Since Cole is so out of it he just laid there. One lady did massage on Cole’s arms and legs. Another did healing touch and acupressure. Pretty cool to have a hospital that is open to and will provide anything that will help these kids.

Cole also got another transfusion of blood. His H&H was low again. It could be from bleeding from the surgery, it could be some post-op bleeding, or it could be from the massive amount of fluid Cole has been given, kinda diluting his blood. And of course it could be from a combination of these things.

We also got labs. We were shocked to see his AST and ALT which have been normal to be higher than they have ever been. But after talking to the transplant surgeon, he assured us these high numbers were due to the surgery. They should start normalizing in a few days.

Cole is still getting a ton of IV medicines. It seems that he is getting about 12 IV hookups in a 24-hour period. This hopefully will start tapering off. They took some blood cultures and are seeing if they grow anything. The plan is to have Cole on prophylactic antibiotics for 7 to 10 days post-operative. We may end up even going home on antibiotics.

Cole has been pretty much out of it all day. He rarely even opened his eyes all day. When he did manage to look around he was just starring blankly. It was like he wasn’t really in there. As the day progressed, they lowered his morphine dose and he seemed more with it. It seems somewhat like transplant. Kinda like we are starting all over. I know that the recovery for this is much shorter than transplant. But it is still a little disheartening. Cole’s incision is identical to the incision at transplant. This time he has one JP drain as opposed to the two at transplant. He was off the vent immediately this time as opposed to 5 days at transplant. But I think I remember Del saying Cole was doing leg lifts at day two. This time he seems to be in more discomfort; but then again, I wasn’t at Cole’s bedside much immediately after transplant. I had my own issues.

For those of you wanting to know how we are doing. We are doing OK. I wish I could say great, but it is hard to be here with the holiday season around the corner. We’ve got multi-colored Christmas lights hanging from our room window, and from Cole’s hospital crib. And we’ve got our Christmas music playing on the CD player in the room. So we are trying to get in the holiday spirit even if we are in the hospital. But we really want to be with Anna. I feel like this is a very impressionable year for her, and we wanted to do holiday things together; like drive around and look at lights, shop together for mommy and Cole, read her Christmas books before bed to get her excited. Just be there to help her make decorations. I know Christmas is much more than those things, but we want to make it a special time for Anna particularly. I think we will be home for Christmas, but only a few days before. We have gotten most of our Christmas shopping done here thanks to the Internet, gift certificates and our friends the Sudmans who stayed by Cole’s bedside for 5 hours while both Del and I went to the mall. Thank you so much Joann. That was a huge help.

We are still trusting God. This is His plan. I don’t know how else to say it. It seems I have said this over and over. We have still witnessed to others around us. We have met so many wonderful people and kids here. We have met a family just starting out on their Biliary atresia roller coaster. We have met a family whose child has an undiagnosed immune disorder. We have met another CLASS kid from our online support group. Ayden is a 2 and a half year old little girl living with BA. She is doing great and transplant doesn’t appear to be in her near future. Ayden, her mom, DJ, and her grandma, Mary, came by to see us. They brought Cole a big clown balloon, and in a moment of alertness today Cole actually watched it bob around in the room. Ayden and Del played a little tickle game in the hall. Cole is still quarantined from kids especially. It was so nice to meet them and know that they are also keeping up with Cole and most importantly praying for him. Thank you guys.

We have also met a miracle baby named Candace. This is actually a very uplifting story. Candace’s family has been through many recent trials. The are an older set of parents, probably in their mid to late forties. They have older children, but recently got pregnant and lost the baby shortly after her premature birth. They decided they were to old to have kids, so they were going to do something about not having kids, but before the wife could get the procedure done, her mom died, then shortly after her dad died. A few weeks after that she realized she was pregnant again. Ooops! Well everything went well at first. Candace was a normal baby, but one day when mom was giving Candace a bottle she started throwing up blood. Then she started having bloody diapers. They brought her here where doctors determined she was in acute liver failure. They basically told the parents that Candace might likely not survive. Her only hope would be to get her a new liver immediately, but there was no guarantee that would happen in time. Her parents were obviously devastated. They even began to plan her funeral. Candace’s mom and dad said they weren’t really “religious people” but soon they felt His pull. Dad began a bedside vigil with fervent unceasing prayer. He prayed by her bedside for hours, both day and night. Suddenly and without any type of medical explanation her liver began to improve. Every day it improved a little more. They gradually started taking Candace off of monitors. Her liver was working great. It was a true miracle. But this miracle doesn’t stop there. The doctors had Candace on a feeding tube. Her body seemingly wasn’t processing sugars the way that it should. Once again the doctors told them they were going to do another test on baby Candace to see if she could handle the sugars properly. But the doctors told the family it probably would show her body has a problem, and not to get too hopeful. Once again, God proved them wrong. Monday, Candace should go home without any problem whatsoever. The doctors are dumbfounded - something has happened that they just can’t explain. Candace’s parents know exactly what happened. God’s mighty and merciful hand…that’s what happened!

I don’t know why God chooses to heal some by miraculous means and some He heals through the works of the doctors. I don’t know why He calls some children to him suddenly, while others toil in pain. I only know that He loves these kids and holds a special place for them all. You can read that in your bibles. Mark 9: 36-37

December 10 – 6:30pm

Cole is out of surgery now and we are all actually back in his room on B5. The surgery was a little more complicated than they expected. It took them nearly 5 hours. The main problem was they couldn’t locate the loose bile duct. They tried to wiggle the wire through to locate the end of the duct, but it came out much higher than they were expecting. They started resecting the liver further down in an attempt to locate the duct. They got all the way down to the main duct. At this point they had kinda backed themselves into a corner and had to redo Cole’s original duct. After revising his original hookup, they found the duct higher up than were they started resecting, but still lower than where the wire poked out. Basically the wire didn’t come out through the duct. This is what led to them having to search around. So today Cole had two ducts connected. The one that needed to be done and the one that didn’t. They had to fix something that wasn’t broke. This can potentially lead to more problems in the future. The main duct was working great before, now there could be problems further down the road, much like this originally happened. The chances are small that this new hookup could be problematic, but there is still a chance. The doctors used two small stints in each duct. These stints are tubes that are put in place at the connection point that keep the duct open until it heals. In a few weeks they should slip out of place and pass into his diaper, or out of his diaper, depending on how explosive it is. J

We need to be praying that the ducts stay open and flowing. There is also always the chance that these ducts may leak, so we want to pray that that don’t leak. If they do we will see green bile in his JP drain. We also may see more strictures in the main bile duct, since it was revised. This would present itself they same way this bile problem did, with fevers and then worsening in liver numbers.

They were able to extubate Cole after the operation. He was in recovery around 4pm, in a huge amount of pain. Still somewhat groggy, he would cry a horse type cry. The tube made his cry very course. The doctors were administering morphine. But Cole was still in a lot of pain. He was breathing very fast and his heart rate was near 200. He needed some oxygen blown by to keep his oxygen saturation up. Even in the amount of pain Cole was in they were unable to give him more morphine because that would further compromise his breathing. So we just had to tough it out. Cole got so worked up when they came in to x-ray him. They had to sit him up to slide the film under him. That had to be painful. I can only equate what he is going through now to what I went through when I donated. I’ll tell you one thing I would have punch someone in the mouth if they bended me in half like they did Cole. They also had to come in and ultrasound Cole in order to make sure his veins and arteries were still flowing and in good shape. He did surprisingly well with that. And this showed nothing out of the ordinary.

One thing we initially questioned after the surgery was the fact that they didn’t use an epidural. When Cole had his Kasai, way back when, the epidural was used to help pain, but not compromise his breathing. The first anesthesiologist that talked to us yesterday blew it off. Then we had a different anesthesiologist today who we talked after the surgery that said an epidural would have been a good idea. At first, we were a little ticked off that this idea was so quickly put off, but after talking to the transplant surgeon, he said they don’t like to do epidural because they would have to numb him to high and close to his lungs, which may hinder his breathing. So we felt better after talking to the surgeon. But as Cole’s parents it is hard to see him all messed up again. He was really happy and playful this morning, now once again; he looks like he has been assimilated. (A Star Trek reference)

Cole is doing pretty good right now. He is sleeping and seems to be fairly comfortable. He was just given another dose of morphine, but they told us to expect a restless night. Both of us will be staying here in the room tonight. This was another major surgery for Cole. He is going to be one tough little boy. A broken leg to Cole is going to seem like a pricked finger. He respirations and heart rate are both very high, probably due to the pain. When he gets the morphine dose he relaxes and everything comes down.

So to recap our prayer requests. Pray for open bile duct. Pray for no leaks. Pray this fixes the problem once and for all. Pray that Cole’s pain goes away. Please just pray for healing.

December 12 - 11:30am

Well, here we go! Cole was taken down to the radiology room at around 9:00.
They talked to us for a while about what they are going to be doing then put
Cole on the table and hooked him up to all the monitors. He screamed his
head off the entire time. He was so scared. They then injected the
anesthetic into his PICC line and within about 3 seconds he was out. I don't
think I will ever get used to seeing that. This time they didn't need to
mask him because he had the PICC, but still it is very weird and unnerving
to see your son one minute screaming his head off, and the next he is
starring wide eyed with a blank look on his face.

The radiology procedure took about an hour and a half. The tranplant
surgeons came out to talk to us first. They basically said they have clearly
identified the problem, but the dilation procedure was not an option. They
would have to do surgery on Cole. Drs Tiao and Alonso said the longest part
of the surgery is going to be getting Cole's liver in a postion where they
can fix the problem.

Basically, the problem is that one of the ducts was not connected to the
small intestines. I guess I didn't have the perfect biliary anatomy they had
thought. Think of the biliary system like a tree. The smaller branches at
the top connect to medium branches and then to large branches and then to a
single trunk. They thought this was the layout of my ducts. But it seems
that I have a smaller trunk as well as a big trunk. For you tree huggers out
there, you can make the analogy of a single trunk maple tree with a two
trunk River Birch. This smaller trunk is very very tiny and during the
original transplant would have been undetectable due to it's size and
location. Now that it has swollen with bile it is much easier to see and
locate. The surgery is going to be a bit more complex only due to the fact
that this problem is on the back side of the liver. The surgeons are going
to need to flip the liver very carefully without harming other parts of the
liver including the veins and arteries leading into the liver.

During the radiological procedure the radiologist, threaded a needle and
catheter into the duct to inject the dye in order to locate the problem. The
pictures they got were clear. They then threaded a wire into the dilated
trunk. This will help the surgeons precisely locate the duct. Remember even
these ducts, although dilated and swollen, are still very small. The surgeon
will need to basically push on the wire and "jiggle" it through the end of
the unconnected duct. This will allow them to physically get their hands on
the duct and reconnect it to the small intestines. They will then stitch
this end next to the original duct. So rather than having one bile drain
connected to the small intestines, Cole will have two.

The surgeons said this is fairly common. It was even in the area that they
expected. Dr. Alonso said this is totally fixable and in fact of the 20
living donor transplants, they have seen nearly this exact thing in 8 of
them. It is good to know we have company and they were prepared for this.
They said the surgery will take about 3 to 4 hours and if all goes well Cole
will be taken directly from recovery to the floor. He will skip ICU. They
also plan to extubate (take the breathing tube out) right after surgery.
Cole will have an NG tube and a catheter for a day or two and also have a JP
drain for a little longer. They also plan to put a new c-line in.

After the surgery guys left, the radiologist came in and showed us pictures
of just what they saw. It was very interesting, and made it seem very much
OK. But this was still pictures of our little guy's insides we were looking
at. I asked the radiologist how this duct closed off. It seemed to me that
this open end would have leaked sooner. He told me he couldn't say with 100%
certainty, but during the transplant they put "glue" on the cut edge of the
liver to prevent bleeding. More than likely that closed off the duct, but
bile wasn't getting out of those branches.

Thank you Lord!! Thank you for answering our prayers. I confess that I
didn't want and even prayed that this wouldn't go to surgery. But in the end
God does know what is best. Above all I prayed for the problem to be
identified and fixed. God gave the doctors a clear view of what was wrong.
In fact, the doctors told us today that this bile was the cause of Cole's
fevers. Bile would just sit in there, like an absess, and get infected.
Thank you Lord, for giving us the solution. Thank you for allowing us the
technology to fix this, thank you for the skill you have given these people.
There is just so many other praises we need to give Him.

We still need prayer. Prayer for the surgeons and medical personnel doing
the operation. Prayer that the surgery goes smoothly and uneventfully.
Prayer that there are no post-surgery complications. Prayer that Cole
recovers quickly. Prayer for long term health for Cole. Prayer that this
fixes Cole's fevers. Prayer that this is our last medical hurdle. Prayer
that Cole's EBV is kept under control. Prayer that his EBV doesn't become
cancer. And continued prayer for Del and myself. And we can't forget to pray
for Anna and our family who want to be with us so badly, but can't.

Phewww!! It is a good thing God is so big. Cause that is a lot of requests!

I'll try to update you all later today or this evening, as Cole comes out of
surgery. Thank you all so much.

December 9 update - 10am

Just wanted to let you guys know that they bumped Cole. Apparently, there
are two emergency radiological procedures, so they moved Cole until tomorrow
at 9am. They could have scheduled him later in the day, but that would push
back the OR time into the night if the operation is deemed necessary.
Somewhat frustrating. But this maybe happening for a reason we can't see.

Also, for those of you a bit confused about the December 7 and 8 post, I can
explain. I wrote the December 7 post and tried to e-mail it to our friends
that are posting it back home. Anyway, something happened and I ended up
trying to cancel the message as it was being sent. When I hit stop it sent
me back to a blank page and I never saved the message. I thought it was
lost. So I rewrote the message and sent it December 8. Therefore the posts
are nearly identical. Sorry, I'll hit save next time

December 8 –

So the plan is to, number one, fix the bile strictures, number two, to get the EBV under control, and number three to get us HOME!! The EBV thing, unless it gets out of control, should not push our discharge back.

Now some other things Cole has had to deal with. Friday, shortly after my morning post, Cole’s PICC line broke. Basically, Cole’s pumps that were pumping fluids and antibiotics were going off, saying that his line was occluded. The nurse would come in flush the line and it would flush fine. It would alarm a few minutes later, once again she would check the line and nothing would appear to be wrong. She finally called up for a new pump, which seemed to work fine. Cole eventually fell asleep for his nap. When he woke up his shirt was soaking wet. They took the dressing off and there was a hole in the line. They needed to call a CVC nurse to come up and fix the problem. They worked on the line for an hour. We had to hold Cole down on his back with his arm straight out while they worked on the line. After an hour, they got the line repaired. But the next hurdle was that the line was now clotted. They needed to flush it with some TPA, a clot-busting drug. They let it sit in the line for an hour and it did the trick. Line problem solved.

Today, “issue boy” through us another issue. His line clotted AGAIN!! We have the TPA in the line now, so hopefully this will get the clot broken up. We only need the line until tomorrow. At that point the docs will place another c-line. If the strictures are repaired by the radiological procedure they will do a PICC exchange. If they need to go to surgery to fix the problem they will put a new broviac in.

Cole has been in a fantastic mood, except when they are messing with him. He loves his nurse Emily. He even wanted Emily to hold him. He has managed to smile a lot to the nurses and staff. I love it when he is like this. Last night was great as far as Cole was concerned. I, however, didn’t sleep well. Cole is on so many different IV medicines and every time a new medicine is in, the pump beeps at 10 minutes to empty and when it is empty. We are in a new larger room. This room is a little farther from the nurses station, so they can’t hear the beeps so well. That means I have to get up, turn the pump off so it won’t wake Cole, and then stumble out into the hall, rubbing my eyes to get a nurse. This went on all night. Also to make the night even more exciting, a child a few doors down coded. The alarms went off, people were running around. It was a bit hectic. I ended up on my knees in prayer for this boy. I don’t know even who he is, but it was very serious. After things settled down over in his room, I still couldn’t get to sleep. This morning I learned only that he is in ICU. Because of HIPA laws, the staff can’t say anything about another patient.

Tomorrow is the BIG day for Cole. The procedure is scheduled for 11am. They are going to do the PTC cholangiogram first and then assess the next step. I talked to Dr Tiao, the most junior of the transplant surgeons. He basically talked to me about the events tomorrow. He presented three paths they could take tomorrow. First, the PTC shows the dilations are gone or in an area where they can’t do anything about it. The former would be awesome. He said they have seen it before, that when they go in with the die, the stricture is not there. God’s hand definitely! The latter would present more of a dilemma; if they felt they couldn’t do anything about the stricture I’m not sure what the next thing would be. He just kept saying, “lets just wait and see.” The next path would be the PTC shows the strictures and they are in an area they can get to with a needle and catheter to balloon the duct open, kinda like an angioplasty. This would be great! No surgery. The final path would be the PTC shows the strictures and they can fix them surgically. The main question the doctors are facing is the location of the stricture. The area is on the top edge of the liver, basically under the diaphragm. This is a hard place to reach whatever the fix. The stricture may be at the bottom of the “Y” or it may be in one of the arms of the “Y” branch. There is even the possibility of the duct being in the shape of a “V” and one of the sides simply not connected to the small intestines. Dr. Tiao said the PTC will hopefully reveal the scenario. Whatever the case, Dr. Tiao told me how the basic surgical procedure will go and told me of the complications. They don’t have a huge amount of experience with this type of operation. They only see this in living donor surgeries, and have only done 20 of those surgeries, so there is always the chance of something. But he also assured me that they have never have lost an organ from this type of complication. So I guess, we just WAIT…..AGAIN.

PLEASE, PLEASE, PLEASE, keep praying for Cole. We just want to get him healthy first of all then HOME.

December 7 -

Well, just when things were going good "issue boy" has another issue. It turns out that Cole does have active EBV. Remember, this was the virus we didn't want to be active. I'll give you all the "what's" about EBV...so here goes. EBV is the ebstein barr virus, a herpes virus. This virus is present in the vast majority of the population. I had mono when I was a kid, this is the EBV virus. (I still remember the girl who gave me it.) Once you are exposed to this virus it remains with you throughout your life. Some people may even have EBV without having gotten an active form of mono. Anyway, since my liver was EBV positive, and it was transplanted into Cole, the chances were pretty high, 80%, that Cole would convert to EBV positive whithin the first year. And he did. The potential problem comes because he converted so soon after transplant. The best case scenario, as far as the doctors are concerned, is if Cole had been exposed to EBV prior to transplant. Of course, this is God's plan, so we are confident that His plan is perfect. But had Cole been exposed already to EBV we would not be dealing with this whole ordeal. The second best scenario is if a kid that was EBV negative prior to transplant, but converted farther away from transplant.
The course of treatment would be to simply lower his prograf. However, with Cole, since he converted so early, they are treating him with IV gancyclovir, and IV cytogam. I'm not sure how long the gancyclovir treatment is, but the cytogam is a once a week IV medicine that will be given every week for 6 to 8 weeks. Also, normally they would lower Cole's prograf level, but as for now they feel it is not necessary.

Cole's EBV level made a huge jump over the last few days. It went from 0 to 400, and then up to 18,000!! It then dropped a little back to 13,000.
Basically this is the viral load in Cole's blood stream. The good news is that Cole is asymptomatic for active EBV. He doesn't have fever or is seeming sick. Remember only a few weeks ago the docs up here scoped Cole both from the top and from the bottom. They also Ct scanned his small intestines. And nowhere did it show any ulcering or signs of active EBV.
They really are not sure how the viral load plays into the whole equation.
They are going to be taking some biopsies of Cole's liver while doing the PTC or surgery on Tuesday. They will be checking for active EBV in the cells of the liver.

Since Cole's history for the fevers is to get a high fever, get on antibiotics and then get better, until he goes off the antibiotics, they feel this is a bacterial type of infection. This further points them toward the bile strictures being the cause of Cole's sicknesses. If it were a viral type of infection, he would most likely not get better on antibiotics.

The main reason for the agressive treatment is that EBV can lead to a thing called PTLD, which is basically a cancer of the lymph nodes. This is not a good thing to have. Research suggests that somehow the active EBV somehow interacts with a kids prograf (anti-rejection med). A cell goes a little wacky and starts readily multiplying, causing PTLD. The likelyhood of the EBV turning to PTLD is only about 10%. And their is no link between high numbers of EBV and PTLD. At this point the research doesn't know if there is a link. It seems that it is a random chance that EBV turns to PTLD. But we know that there is truly no such thing as a random chance, God knows all and is in control of all. But as a community, we don't know why some kids get PTLD and some don't.

We will just keep praying that this doesn't lead to PTLD. That is truly ALL we can do. And it is truly the best thing we can do.

So basically the plan is to fix these bile strictures, number one. And number two deal with the EBV. And number three to get us HOME! The EBV issue will not keep us here any longer, unless Cole gets sick again. Then we have a problem. The docs feel that the gancylovir and the cytogam will give him a passive type of immune system to fight the virus.

At first, Del and I were both very scared when we heard that Cole's viral load went up that high and he had active EBV, but the docs allayed our fears a bit. They said this is something that happens to most of the young children that are transplanted and 9 times out of 10 it becomes no big deal.
But the most comforting aspect is that we have faith. And when I say Faith, I don't mean faith that everything will turn out like we want, but faith that our God works All things for good. Romans 8:28, I think.

December 5 -

Cole has been in a good mood the past few days. He has been smiling and
playing most of the time. He still seems to wake up in the morning fussy,
but we think, on top of everything else, he is getting a cold. He wakes up
very congested in the sinuses and he even has a little runny nose. There is
not muchmore they can do for him. He is on 3 different broad spectrum
antibiotics, which are covering practically everything. His blood cultures
are still negative. The nurse did hook up a humidifier kind of system to
keep Cole's congestion loose. It does seem to be helping.

Now on tho the big news of the day. They have postponed Cole's procedure
until Tuesday. There are several reasons for this. The first is they want to
get more antibiotics on board to help prevent any possible infection
associated with the procedure. But secondly, they are having a scheduling
conflict. It seems that the transplant surgeosn are highly skeptical whether
this interventional radiology procedure is going to work. They have decided
to block Operating Room time immediately after the procedure in case they
need to operate to fixe these bile duct strictures. They needed to get the
anethesiologist for a longer time frame, they needed to coordinate the
adjacent rooms, and they needed to sinc up the various doctors that will
need to be present for both the PTC (radiology procedure) and the surgery.

The plan is the transplant surgeons will be in the room, basically directing
the radiology guys. The surgeons feel that with Cole's anatomy, the location
and size of the stricture, the PTC will not be the best choice to fix the
problem. They want to be in the room and make the ultimate decision. The
radiologists here are the best, and are great at working with the transplant
surgeons. They won't continue with the procedure if it in any way interferes
with the successful outcome of the surgery.

The radiologist will perform the cholagiogram to map out the ducts, this
will also assist the surgeon with exactly locating the problem. If the
transplant guys feel the PTC will not work they will wheel Cole over to the
OR and fix the problem surgically. This way Cole will only have to be under
anesthesia once.

We haven't yet spoken to the radiologists or the transplant surgeons, but
the GI docs have been giving us some basic information. They said if they
have to do the surgery, although it is a mojor surgery, is only on fifth as
risky and involved as the original transplant. They said the surgery will
absolutely fix the problem and the chance for recourance is highly unlikely.
The recovery for Cole is not as long as the recovery post transplant. They
said the hospital stay after the surgery will be about a week and once
discharged we can go home. HOME HOME HOME! We won't need to wait around and
watch labs like we did after the transplant.

OK, now lets see if we will be home for Christmas. Let's say that Cole does
need the surgery. This takes place Tuesday the 9th, one week stay in the
hospital puts us at the 16th, figure we leave to drive home on the 17th and
are finally home and settled the 18th. That leaves five shopping days 'til
Christmas. Also that means that there will not be the obnoxious display of
Christmas lights that I put up every year. I know the kids will be
disappointed, but I'm sure some of the neighbors will be happy not to be
blinded every time they walk out of their house. I am just so happy we got
the tree and inside of the house decorated before we left. At least Anna can
come down every morning and feel the excitement and anticipation that
Christmas brings.We really wish we could be home with her.

Maybe this is God's way of showing us the true importance of Christmas. It
is not about gifts, or trimmings. It is not about decorations or bright
lights. It is about celebrating with our family, the birth of our Lord and
Savior, Jesus Christ. Both Del and myself cherish the quiet times we have
here. We feel so much closer to Jesus. We cannot wait to get home, but
waiting is something we have grown used to (God's timing you know). I
thought last year was a special Christmas. It was the first Christmas I
experienced as a Christian. This year I know it will be even more special.
This year we will truly know what it means to rejoice and celebrate!

Please continue to pray that the PTC procedure works. The surgeons are not
the ones in true control. Our God knows the plan already.

December 3 update.

I only have about 30 minutes to do this update. I, Dave, am in the family
resource center using their computers. They close in 30 minutes.

I don't remember the last update, so I'll start with Monday morning. Cole
had been given his last dose of antibiotics at 6 am Monday morning. He had
been fever free for about 30 hours, so the docs at CMC decided to discharge
him. I stayed the previous night at home and Del slept at the hospital.
Monday morning I packed the car, dropped Anna off at school and headed
straight to the hospital to pick up Cole and Del. We then continued straight
on to Cinci praying the whole time Cole wouldn't spike another fever. We
hauled butt to Cinci. We made it door to door in about 7 1/2 hours!! We were
unabel to get a room at RMH so we stayed at the Vernon Manor. a nice hotel a
few blocks from the hospital. Cole had a very restless night. He cried out
every hour or so. We thought it was just the uncomfortable crib the hotel
provided. The next morning we took Cole in to Children's to have blood drawn
for a full set of labs. They were unable to get blood throught the PICC, but
stuck him successfully the first try. We then went back to Vernon Manor to
pack and move to RMH. The people at RMH had called the night before just
after we set our bags in the room at Vernon Manor. Well, Cole was acting a
little fussy and Del thought he felt warm, so she took his temp. 101.6! She
called our transplant coordinator and she told us to bring him immediately
into clinic so they could look at him and decide the next step. Once there
Cole's temperature returned to normal. He was still fussy so they decided to
do a chest x-ray and have us wait around for a while. The chest x-ray showed
nothing out of the ordinary, and we went back to clinic wher Cole fell
asleep. The GI fellow came in about an hour later, Del and I had fallen
asleep also in the chairs. Cole still didn't have a fever, but the doc felt
he just wasn't acting right. She decide to admit Cole and just watch him. We
got up to the room and Cole had to start getting prepped for his CT scan.
Cole ahd once again been NPO since 8:30am and it was at this point about
2:00pm. He was getting very cranky, probably from hunger. He had to drink
some contrast, which was mixed with apple juice. We thought he would just
wolf it down. He did chug the first ounce, but then threw the bottle down
mad as a hornet that it wasn't his normal milk. The only option was to put
another NG tube down him. This once again slid in no problem. We learned
that the hospital here uses weight tubes, so they slide in easier. Thank you
Lord! He got the contrast and then an hour later we were in the CT scan room
getting ready. Del thought he felt really warm. They took his temp and his
fever was up to 102.3 under the arm, so he must have been at least a degree
hotter. Cole always shows a much lower temperature under the arm than
rectally. They did the scan without the use of sedatives. The fever had made
Cole a listless, lump of baby flesh. We could tell his fever was raging
again. He looked awful! We rushed him up to the room to find his temp was
now 103.8!! They got orders and hooked him up to antibiotics at around 5:30.
We figured the antibiotics would kick in within a few hours and Cole would
turn around fairly quickly. In the meantime, Dr. Bucuvalas came in to talk
to us. He said, he looked at the scan and the bile ducts hadn't gotten
worse, but they hadn't gotten better either. The team strongly feels these
bile duct strictures are the source of Cole's problems. They can explain his
fevers, his abnormal Alk phos and GGT scores, and even his prograf level
being all over the place. They came up with the plan. They are going to skip
the liver biopsy at this point and go after the strictures with an
interventional radiology procedure. They only explained the procedure
briefly. The radiologists that do the procdeure are in meetings until
Friday. This however, lets the docs get the infection under control and get
antibiotics on board. The procdure will be done sometime Friday. We will no
more hopefully tomorrow. They will first go in and inject a dye into Cole's
liver to map the bile ducts and specifically locate the strictures. Then
they will use a very thin needle to go straight to the duct and insert a
catheter. At this point the will balloon the duct and place a stint in the
duct to keep it open. The stint will stay in for a few months. Cole may or
may not have a drain to the outside. The docs said they will know
immediately if this procedure solves the stricture. If not then they will
have to go in surgically and repair the problem. They will not be able to
tell immediately if this is the source of the infections. The only way to
tell that is to have Cole remain fever free. ......10 minutes to
closing...typing very fast....

Today Cole's fever finally broke at around 7am. He did projectile vomit his
morning bottle, but at that time his fever had peaked at 104.8!!!! Cole was
really in a pretty good mood throughout the day. The docs had started him on
vancomycin (sp) which may have been the antibiotic that got this infection
under control. I'll type a little more tomorrow, when I have more time.

If you would please pray that the procedure works. Pray that Cole stays
healthy, happy and fever free both before and after the procedure. Please
continue to pray for strenght for us. Pray for understanding for Anna, as we
are once again painfully away from her. We continue to Trust in the Lord!

November 29 - 9:30 pm
Man I feel whipped. I (Del) left the hospital (Dave is staying the night with Cole) and got home around 8pm to get Anna bathed and put her to bed. I thought Cole was okay when I left, but then Dave called and told me that Cole's fever was up again over 103. He is already on IV antibiotics, so there is nothing else they can do right now other than tylenol. It just seems like the antibiotics aren't working like they usually do. I'm worried and scared right now. When I was putting Anna to bed tonight, we read a Christmas story, then prayed for Cole, and then I really just needed to hug her. Tears were streaming down my face because I kept thinking that this might be my last night with her for a while, depending how things go in Cincinnati. I just hate the thought of leaving her again. I feel like she is emotionally fragile right now. She has been having a lot of accidents lately (wet pants) and I think its an attention thing. She wants my attention so badly. She will also tell me that she is sick or has hurt herself (bumped her head or her foot or whatever), I think because she sees that illness wins my attention with Cole. My heart just aches for both my kids right now. Shoot, now I'm making myself cry again. Dave called me back after I had Anna in bed. I told him how I was feeling and of course he reminded me that God is still in control, etc. I know that. I don't doubt it. I just get scared thinking of what His plan is sometimes. Its weird, but I feel more down at this particular moment than I did during the transplant experience. I need prayer too if you have any more to spare. Maybe God is using this long, drawn out trial to test our endurance of faith. Please pray that I can once again exchange my weakness for His strength, and remain confidant in Christ, not the outcome.

November 29 - 11:40am
Cole is back in the hospital today with a fever of 103.6. I (Del) thought I heard him breathing funny this morning at 7:45, so I went into his room and as soon as I saw him I knew we were going back to the hospital. His face was bright red, and he was just sick looking. I picked him up and he was whimpering but could hardly open his eyes. We called the local GI doctors here in Charlotte, who said to go to the hospital and they would start him on the IV antibiotic cocktail again, this time gent, vancomycin, and zosyn. (sp??) I also called the transplant team in Cincinnati and got them on board with what is going on. We were planning to drive up to Cinci on Monday anyway for Cole's CT scan, etc. but now it looks like we need to get there quicker to determine what is going on with his bile ducts. I imagine we will be transferred from our hospital here to Cinci via medical airplane, like last time. I think (and I stress think because I know I've probably gotten something wrong here...) that the problem is bile strictures. The bile ducts are probably scarred or something such that bile is backing up, causing infection. The stricture puts back pressure on the duct, causing the other side of it to dilate. Remember, we saw some dilation on the last CT scan 10 days ago. So we will need to repeat the CT scan to see if its worse. Then we will probably need to do some interventional radiology to see if that can clear the "clog." If this doesn't work, then we are probably looking at more surgery to resolve it.

Please pray: that Cole will respond quickly to the antibiotics and his fever will come down and the infection will get under control. That whatever the problem is, that the doctors can quickly and efficiently diagnose it, and treat it (ideally without needing surgery.) That Cole's liver itself would continue to function normally, and that no rejection issues would arise in the midst of this. That Cole's white blood count and his neutrophils would not drop. That we would be home for Christmas. Hmmm... I'm not sure what else. If you are at a loss of what exactly to pray for, as I OFTEN am, remember this verse in Romans 8:26-27. Our pastor Harrison Spitler shared this with me last time I wasn't sure what to pray for. "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the the Spirit intercedes for the saints in accordance with God's will." If you are praying with a heart that desires and surrenders to God, ask that the Spirit would intercede for you. Then read verse 28 and know that God will use this situation for good.

November 26 - 7:00pm
    We made it home just in time for Thanksgiving dinner! Thank you Lord! I'll start with what happened yesterday. I took over for Del at the hospital around 1pm. Anna actually slept in that morning, so I got to sleep a little later as well. When we got to the hospital Del took Anna over to Chic-Fil-A and I took Cole down to have another ultrasound. Del must have conveyed her concern for about the inaccuracy of the last ultrasound and it's inability to detect the bile dilations. When we got there I think it was the radiologist himself who did the scan. He first told me that unless the dilations are large the ultrasound probably wouldn't detect them. He said the CT scan is much more detailed at detecting things like that. Cole did great for the half hour procedure. He laid in my lap and I read him book after book. Cole just laid there and let the guy scan him. I also think Cole does better with men. Most of the nurses are ladies and they tend to do the things that Cole doesn't like. The results of the ultrasound were as the tech/doctor predicted. It showed no signs of the dilation. Which I guess is good, since they are not large. But that still doesn't give Cinci the information they needed. Cole's labs are fluctuating a bit. This mornings labs revealed his AST, ALT and bili are still normal, but his ALk Phos is now up to 400 (normal is in the teens) and his GGT is down from yesterdays labs (329) but still very high at 259 (normal 7-50). These are the numbers the transplant surgeon specifically told us to watch in regards to the bile duct dilations. So it looks as though the plan is to drive up to Cinci for a CT scan. With the results of the scan they will determine the next course of action. They may do a liver biopsy, they may do the cholangiogram, or even try to open the ducts with a needle and some medicine. The last course of action is surgery. And we don't want it to come to that. We are going to talk to the Cinci docs tomorrow and find out if we can do the scan here in Charlotte and have the picture somehow sent up there. Cause if the scan shows no further worsening, they might want to continue to watch and wait. We should have a definite plan tomorrow. Whatever happens I think we will drive up because we don't know what treatment will work, and if it comes down to the surgery we will be up there a while, maybe a few weeks. That means it will be cutting it close to Christmas!! So just pray it doesn't come down to the surgery, for Cole's sake.
    Anyway, last night Del came home to stay with Anna and I stayed the night at the hospital. Cole did awesome! He was in such a great mood. He ate like a horse and slept like a bear. Even though the nurse had to come in every 4 hours and take his temperature and listen to his lungs, Cole mostly slept right through it. It helped to have a male nurse last night. Cole really doesn't seem to be as threatened by medical men. Also, Cole received his last dose of antibiotics last night. They were supposed to discontinue his antibiotics Monday, but because Cole's white blood cell count was so low, if something happened he wouldn't have the ability to fight it. So as a precaution and until his WBC came up they continued with the antibiotics. I am happy to report his WBC is good, a little high, but with everything going on his body is probably producing more to fight any remaining infection. Also his red blood cells seem to be doing well. His H&H is holding, not going up yet, but at least holding. I don't know if Cole is still having the trace amount of blood in his stool. They haven't checked that in a while. Also his neutrophil stores are back to near normal level.
    This morning, shortly after Cole woke up the nurse needed to draw labs. Particularly a prograf level. She tried to pull it from his PICC, but no luck. It seems to flush fine, but just won't draw. She called down to the phlebotomy lab to have some one come up to stick him STAT. In order to get an accurate prograf trough it needs to be drawn right before his prograf dose at 8. Well, they were going to be late. The nurse left some heparin in the line in hopes of letting it sit a little while and before the tech stuck him, she would try to draw back. Unfortunately, it didn't. The tech had to stick him to get blood. But before all this Cole had the biggest, messiest, smelliest, most explosive poopy I have ever seen. And I have seen a lot. Where was Del? Probably home in bed! Luckily the nurse was there to help. Cause this was up his back out his pants, down his legs and in a huge pile on the sheets. What a mess!! The nurse was laughing at my expressions and the amount of poop in this kid. The result of the enormous dinner the night before.
    Once we got him cleaned up, the tech and I laid him back. And she stuck him first try. Cole didn't even scream or flinch. Blood flowed good for a while then stopped, I thought "Oh no!" She dug the needle around a little and Cole still didn't squirm or cry. He was such a brave little guy. Even I was getting a little squeamish. She was unable to get anymore out of that vein. Thank God, she got just enough to do the labs ordered.
    We knew they were going to let him go home if Cole didn't get a fever through the night. The docs also wanted us to wait around for the lab results, just in case there was something unexpected. At around 10:30am they let Cole go home. The prograf level was the only lab still pending, but Cinci could adjust doses from home. We couldn't get out of there fast enough. Del's parents were at our house preparing Turkey Dinner. Praise God! We got home in plenty of time to spend the day with family.
    The only other concerning thing is Cole's prograf level is still very high, even though we continue to lower his dosage. We talked to the Cinci docs, who now seem to think Cole is metabolizing the drug a little differently than before. They want us to hold his dose tonight and tomorrow morning. This will hopefully get him into a suitable level. At some point tomorrow we need to take him back to CMC to draw blood for new prograf level present in his bloodstream. Kinda clean out his body of the stored prograf. Then the docs will adjust is dosage for the nighttime.
    It seems that both Del and I are getting sick again. This is the oddest thing. I never get sick and this is now the second time both of us have had this sinus thing. Scratchy throat, either sinus congestion or sinus dripping, and some upper airway junk. And remember when we had the stomach bug. This seems to be a bad year for us getting sick. Lets pray we don't give it to Cole. We don't need to pass this around anymore!
    I'll tell you, even in the midst of this chaos. God is still working. I spend so much devotional time in the hospital. God still has Cole and us in His grip. I know many think we have this incredible strength, but I promise it is strength not from us, but from Christ himself. Just check out the new scripture banner. That is an eternal promise from God!

November 25 - 9:00pm
    Well, this morning Cole was admitted to CMC. Once in he was basically just watch for the day. The little stinker's fever broke and he seemed to be doing fine. They are culturing blood, stool, urine and even a nasal swab. It may take several days to completely clear the cultures, but Cole was in a relatively good mood considering he was in the hospital again. They nurses were having a problem with his PICC line. It seemed to be flushing fine and allowing his IV meds to go in, but they couldn't seem to draw blood off it. They would only get a few cc's before it just stopped. Over several hours and attempts they did manage to get enough blood for all the labs the docs want done.
    Cole got a visit from some of the Carolina Panthers players. Dan Morgan, a linebacker, and Jeff Mitchell, our center, came by Cole's room this afternoon. They brought him a stuffed Sir Purr (mascot), and a 2003 roster signed by both of them. The nurse even got a picture of Dan and Jeff holding Cole. Del said Cole was crying and reaching for her while the picture was taken. Oh well, guess he was scared of being sandwiched between two enormous men. And to think I missed the whole thing!
    Anyway, the docs were talking about letting Cole go home tomorrow if he stayed fever free. Well......at about 7:30pm, shortly before I left, Cole's temperature rose. We were playing on the couch in his room. Cole was smiling, laughing, even dancing. He has become quite the little dancer lately. He more or less just bounces, but it is very funny. Anyway, he was in a great mood. Then he started getting a little fussy. I thought he was just sleepy, since he didn't get much of a nap today. When I picked him up he felt a little warm. I set him in his crib and went to get a bottle. When I got back Del had the thermometer in his bottom. Man, that boy was screaming!! Del watched as his temperature went up to 102.6!! What in the world is going on with him!!? He is fine one minute then sick the next! What are we missing here? I had to leave to get back home and get Anna from the neighbors and get her to bed, so I didn't stick around to see what happened. When I left, Cole was about to get his nighttime meds and go to bed. Or at least that was what Del and the nurse were trying to do amidst the screaming. I told Del to call if anything develops. But as of now I haven't heard from her.
    Please continue to pray for Cole. Pray that the doctors are able to figure out what is going on. Pray that Del and Cole have a restful night. And pray that God heals my little buddy.

November 25 - 9:45am
Cole is probably going to be admitted to CMC today! Yep, you read it right! Just when we thought the bug was out of Cole he awoke with a fever of 101.3 and was very fussy. Del called Joyce, our transplant coordinator, who called Dr. Bucuvalas, the Cinci GI. Joyce also called Dr. Houck, our local GI, who wants to see Cole in his office, then probably admit him from there. Del is probably at the local GI right now. I am staying here with Anna. She has dance this morning and then when the docs figure out what the plan will be for Cole, I'll try to arrange care for Anna.

November 24 -
    This is going to be tough! Compressing the last weeks worth of events into one single update. Sooo much has happened in the last week, both good and not so good. Like usual I'll start chronologically. I guess I can start with last Monday morning, the 17th I think. That morning we knew we would be flying out either that same day or Tuesday. It turns out the flight crew got the information before we did. They came into our room and asked if we were ready. Well, I hadn't gotten back to the hospital yet, we weren't packed up, and Cole needed another dose of antibiotics before we left. The flight guys came back around 1:30. They got Cole on their monitors and drove the three of us in an ambulance to the airport where the med-center air jet was waiting. The ride was good. Cole slept nearly the whole ride, which only took an hour. It flew at 500mph and 30,000 feet. That plane was hauling....door to door in one hour. There was an ambulance crew waiting in Cincinnati to drive all of us over to Children's. The funniest was seeing six grown men lift and move a big stretcher with tiny little Cole on it. He had been in his car seat, strapped to the stretcher for the plane ride and ambulance ride. The ambulance had to pull up to the ER entrance, but we immediately went upstairs to the liver floor. Cole was directly admitted, so that made things fast and smooth. The flight nurse and respiratory therapist were awesome. Tim and Chuck accompanied us all the way from room to room. I think they are required by law to stay with the patient until care is directly transferred to the doctor. The minute we turned the corner on the liver floor, the nurses were waiting for us. Most of them we had known from previous stays and they greeted us with, "You guys missed us so much you had to come back and see us!" Well, as nice as those ladies are this was not the kind of visit we wanted.
    Luckily Cole had held on to his IV throughout the plane and ambulance ride, but just as the nurses are getting him set up on their IV pump, Cole blows another line. They called up to an IV nurse who tried three unsuccessful peripheral sticks, both in his feet and arms. But no luck. Cole's veins either would roll around or the catheter wouldn't thread. They finally decided to stick it in his head. So once again he had an IV dangling from his little skull.
    The call came in that the doctors were going to be scoping Cole the next day at 2:30 and we would need to keep Cole NPO which means "without food" until after the scope. They told us the night was going to be very rough. Cole would need to be cleaned out through the night. They also said they would have to insert an NG tube in Cole in order to give him "Go Lightly", the medicine that would clean him out. As you know, Cole's experience with NG tubes is rough. Del and I knew we didn't want to be in the room during that ordeal. So we told the nurses that we would wait and pray in the parent lounge. We did just that. We prayed fervently that the tube would just slide down with no problem and minimum discomfort for Cole. We waited several minutes then went back to the room. Cole was sitting in his crib, PLAYING with the nurses. They said it went in no problem and Cole only let out a tiny little cry. Wow! Pretty awesome. The nurse started the "go lightly" and said we could expect the diapers to start anytime. After giving Cole his medicines we decided to try to go to sleep as soon as possible, cause we expected a rough night. The first big diaper hit around 3 am. We ended up with about 8 diapers from 3 am to 9 am. It really wasn't as bad as we were expecting. We had a good system that allowed for quick and easy diaper and bedding changes. We kept Cole clothed only in a shirt and diaper, but kept the room very warm. We also laid several absorbent pads underneath Cole. In the event of leakage, we changed his diaper, lifted him up, pulled out the soiled pad and BAM! we were good to go. At about 9 am we reached our goal of at least 2 clear liquid diapers. They then stopped the "go lightly" and pulled the NG tube. Thank God Cole's IV lasted through the night and until he got his latest dose of antibiotics. Otherwise he would have gotten very dehydrated, he hadn't ate or drank since noon the previous day. At about 10 am he lost the IV. The decision was made not to attempt another one and just let the anesthesia guys put one in while he was under during the scoping. By this time Cole had been poked about 14 times resulting in 6 successful IV's in the past 4 days.
    They came up to get Cole for the scoping around 1:30. Since Cole won't wear a mask we push him around in his "bubble" stroller. This is the stroller with a clear plastic rain cover over it. It not only keeps some of the germs out, but also keeps other away. We also noticed that this was the first time in a very long while that Cole was totally free of tubes or wires; no IV, central lines, or tubes. It was Cole unplugged! The anesthisiologist came in and discussed what was going to happen. When she realized he was scheduled for a PICC line the nest day she tried to get them to place it while he was under their care, but due to scheduling conflicts they told us it wasn't possible. The doctor was also unable to arrange the PICC for that day. OH WELL! They would just put a peripheral IV and wait until the next day. We then brought Cole into the room were they were going to be doing the scope. They tried to let Cole just inhale the sleeping gas, but Cole was fighting them. The doctor told us that they would have to be more aggressive if this happened. So they gently, but forcefully placed the mask directly over Cole's mouth and nose and held it tightly. That was a bit shocking to see. We couldn't hear him, but it was very obvious he was screaming his head off under the mask. Poor little guy was probably so scared. After a few deep breaths his eyes glazed over and he was out. We gave him a kiss and left the room. About an hour later they came out to talk to us in the waiting area. The attending GI, Dr Campbell and the Fellow, Dr Konikoff, led us to a little conference type room. I personally thought, "Oh, now what!!" She started with, "Good news and bad news. We found nothing." They were looking for something that would identify the GI bleeding. Any ulcering of the colon or esophagus may be the cause, but it also would lead them to suspect EBV as the culprit. EBV can cause ulcers in either place, but they found nothing. They took biopsies of both areas and would look at the results in two days, but they suspected they wouldn't see anything abnormal. The colon and esophagus looked perfect. The bad news, if you can call it bad, is they still don't have an answer to the GI bleeding. Give my sister-in-laws husband credit; he is a general surgeon and he said they probably wouldn't find anything. He said GI bleeding can go an at a trickle more many months after such a major operation. He also told us more than likely this would eventually resolve on its own. PRAISE GOD if this is all it turns out to be. But also Cinci is very protective and cautious of these kids, and I thank them for that. I would rather them do a procedure to catch something remotely early, than not and find out he needed it done. After the procedure, Cole went to recovery. He was still very out of it, but he slept content in his mommy's arms. He was safe at last; at least for the moment. We then went upstairs were Cole devoured a bottle of milk and ate a huge portion of dinner. He had gone 26 hours without eating. Needless to say he was ravenous. During the procedure they had also successfully place an IV in his wrist. This was now number 7 in four days! The biggest problem with the IV now was it was in his wrist. Even though his wrist was on a stiff board, if Cole tried to use that club like hand it would kink the IV and the pump would alarm. He still needed the IV because he was still getting several different antibiotics to fight the pseudomonas infection. As parents we were experiencing another small problem; here is a 16 month old child, who is already delayed in motor skills, nearly 8 months delayed, because of all his hospitalizations, trying to pick up and play with toys and we are telling him not to use his right arm. As his parent it felt very counterproductive, but seemingly necessary. We didn't want him to get stuck again.
    The night went well. Cole slept great. The nurse was very quiet when coming in to change out his antibiotics. Once again Cole had to be NPO for much of the day. We had waited until this day to have a PICC line placed for several reasons. First, they needed to be sure his blood cultures were negative for infection, and secondly Del and I wanted Cole to have some sedation. This kid had been a pin cushion for the last 5 days. He was crying every time a nurse came into the room. He was literally traumatized and we didn't want Cole to go through a somewhat invasive PICC procedure. The downside to our decision was that they had to schedule a doctor to be there for the sedation along with the other PICC people, and it meant Cole would have to be NPO because of the sedation for 6 hours prior. The PICC was scheduled for 2:30, so he could still have breakfast, but no lunch. At noon the child life specialist came in to tell us the radiology team, the guys who place the PICC, were very backed up they may have to bump us. Well we decided to hold out and keep Cole NPO and see what happened. Thank the Lord they squeezed us in right at 2:30. We get down to the room, they get Cole all prepped and ready, the sedation nurse is ready, Cole is actually strapped in a papoose with his arm hanging out. He is surprisingly calm and watching a Baby Einstein video on a TV they rolled next to his bed. Then they come in to tell us the doctor will be another 30 minutes and he has to be present for the sedation. They ask us if we want to wait or go ahead with the procedure without sedation. All along they had drilled into us that the vast majority of kids go throught this procedure without sedation, and it is very very seldom that they use anything other than some novacain after the initial insertion. Thank God Del answered them. She insisted we wait! I would have said OK lets try it without. We only waited about 5 minutes before the doctor came in. In retrospect, I think they were trying to steer us away from the sedation, maybe the doctor was too busy and didn't feel it was necessary. Who knows! But Del felt sedation was the reason we waited and kept him NPO. Also we were not necessarily worried about the pain, but Cole being held down for an hour procedure screaming his head off, already traumatized by the previous days events. We felt this was something that he needed to help him get through the procedure with as little stress as possible. I am so glad God steered us on the right path. After two attempts to insert a #3 catheter into his left arm (the arm with the best vein) the PICC nurse said it just wasn't threading. She would have to call the radiologist to place the PICC by using ultrasound. Cole's veins are so small and they are so used that they are seemingly shocked. The initial insertion most often goes in ok , but the catheter usually fails to thread. They say that the vein basically clamps down. The PICC nurse, during the second placement attempt, confessed that the sedation seemed to be the good choice for Cole. It didn't stop him from crying entirely, but it definitely "took the edged off." Del was also keeping Cole very calm, by reading to him, and pointing to things on the video. I was in intense prayer. So much so that I barely heard them say "It's in." The radiologist was able to thread it in a hidden vein in Cole's right arm, and using ultrasound, guide it to a perfect location above his aorta. They also usually put a #2 catheter in kids Cole's size, but you can't draw blood off of a number 2. The 3, though bigger and more difficult to place, will allow blood to be drawn, as well as antibiotics and fluid to be inserted.
    Cole seemed to be no worse for the wear; and their was definitely wear. His little arms, wrists, head, and feet were so bruised. In all, he had been poked......for IV's only.......a total of 19 times with 8 successes in the last 6 days!! Hopefully this would be the last line we will need.
    Thursday went pretty smoothly. The liver team came in and said we can go home and finish up the round of antibiotics. They said they could get us out of there Friday morning. So Del and I made arrangements to have Sam Sudman drive us to the airport and Children's Flight of Hope, www.childrensflightofhope.org (CFH), a terrific volunteer organization out of Raleigh, to fly us home. CFH flies families with sick children all over the place. They are a non profit group with donations paying for the plane, fuel, maintenance and general administration. Another perfect organization to donate to.
    The liver team has its big meetings on Thursdays. At this meeting everyone involved with the liver is presentand they discuss all the kids in house, on their transplant list, and any kid they see that is at any other hospital. The docs decided that since we live so far away they wanted Cole to undergo a CT scan of his abdomen. Basically they had searched in his esophagus, colon, and large intestines, but the scope can't see in the small intestines. The CT scan can possibly detect any problems in the small intestines such as ulcers or bleeding. They said it is just a precaution, and normally if there is a ulcering in the small intestines it normally shows up elsewhere.
    The next problem was scheduling. They knew we had arranged a flight Friday morning at 11:30 with CFH. The radiology department was trying to work Cole in Thursday, but wouldn't know until later. So in advanced preparation for the possible scan that evening, Cole had to be NPO AGAIN!!! until they heard otherwise. A few hours later they called us and said they would have to do the scan early the next morning at 6:45. Cole could eat now, but nothing after midnight. Also in order to get a good scan , they had to get some contrast down Cole. And not just a little, but a lot. So in order to get things down, they decided to put another NG tube down him. And once again, ya'll know our record with NG tubes!! The plan was to put it in before he went to bed. Then a few hours before the scan, pump the contrast directly into his stomach. This way he wouldn't need to be woken to have the tube inserted. He could just get that done with and then go to sleep. Soooo, once again Del and I adjourned to the parent lounge to pray and wait. And once again the Lord answered. The tube went in no problem. The rest of the night also went very smoothly.
    The next morning they came to get us right on time. They were planning on doing the scan with sedation. They strapped Cole in the table and Del and I stayed in the room. We played another Baby Einstein video and I blew bubbles to keep him happy. They shot the scan no problem. The techs were very good and conscious about Cole's animosity to nurses and being messed with. They stayed well away and when they had to do something they carefully snuck up. We got back to our room, ordered Cole breakfast and hurriedly started packing to head home. We never did get to go to the RMH. We had been on the waiting list since Sunday. They finally got to us Thursday, but we decided to just stay one more night in the hospital. So for the one week Del and I spent the night sleeping on separate fold out chairs. Not the most comfortable week, but we were happy to be leaving. There truly is no place like home.
    At 9:30, 45 minutes before Sam was supposed to pick us up, the GI doctors came into the room. They said they saw nothing in the small intestines, but they did find something. Something that was not good. They said they found bile duct strictures around Cole's liver. The said the transplant surgeon is looking at the picture and they will decide if we are going to go home or stay for further tests. The GI docs took us to a computer and showed us the pictures. They pointed to three black dots on the surface of Cole's liver. These dots, they told us were bile pockets. They are signs that bile is not flowing as freely through the duct and is backing up, causing the duct to essentially balloon. There are several reasons for this. First, it could be the bile is a little sluggish in that area and this sludging is causing it to back up, or the second and most likely reason is the ducts are backing up in the location where they stitched my ducts to Cole's. The theory is that Cole's ducts are smaller than mine so there is a difference in flow rates at the junction. We were told prior to surgery that this is a common complication to the living donor surgery, or quite frankly to any reduced graft transplant. These "bile duct problems" occur in 30-40% of the living donor transplants. We were also told that this is a fixable problem.
    At 9:45 the surgeon calls up and says he wants the other two transplant surgeons to look at the pictures. At 10:00 he comes up to meet with us and the GI guys. He jokingly says, "You guys plan on staying for a few more weeks?" They conferenced and decided that they are just going to watch things for now. They feel Cole is clinically stable. His liver numbers are fine for now, so once again we wait until something "declares itself." The plan in the meantime is they want to put Cole back on Actigall, a bile thinning medicine, watch his numbers and rescan him in 2 or 3 weeks. We desperately need prayers. If this medicine doesn't help, and the scan doesn't show improvement, the next step is to go back to Cinci for a cholangiogram. This is a procedure where a needle containing a contrast is inserted in the liver. Then the liver is scanned. This will give an accurate roadmap of the ducts. Then another medicine is injected into the duct in hopes of dilating the duct. If this fails to solve the problem, they brake out the "golden bat", another surgery. They would have to cut Cole, just like the transplant and reconnect the ducts. PLEASE PLEASE PLEASE pray that it doesn't come to that!!! We certainly don't want our son to have to undergo another major surgery!
    By now it was 10:15, we knew Sam was waiting for us. They quickly got us discharged and wheeled us downstairs. We got to Lunkin, a small airport where CFH was going to pick us up. They told us the flight was delayed about an hour and a half. OH WELL!! The waiting area was very comfortable and Cole got to see out the window four helicopters take off only a few feet away. OK, OK daddy thought that was pretty cool too. Besides a few hours wait was well worth it. This wonderful group was flying us for free, with volunteer pilots. People who, out of the goodness of the hearts, help out families like us. Our only other option to get home was to rent a car and drive. The transplant guys didn't want us taking a commercial plane, with 50 passenger, re-circulating air, during cold and flu season, with a very immunosupressed child. We didn't have our car with us, and driving would be problematic, because Cole would have to get his IV antibiotics during the drive and we didn't have a pump.
    The pilot John and Co-pilot George, picked us up and treated us awesome. What great guys! The plane was a Piper Navajo, a twin prop craft. It flew about 220mph at an altitude of 9,000 feet. The flight was beautiful. God gave us a terrific day to fly. The sky was clear. Flying that low allowed us to really see life down below. John said it was one of the top five days he has flown that year and being a corporate pilot he has flown many many days. Once again, Cole slept from takeoff to landing.
    Friday, November 21, we were home at last. My dad picked us up at Monroe regional airport. After arriving home and a quick dinner my mom had ready for us, the home health nurse came out to help us get the pump set up and go over the new procedures about the PICC and the meds. We actually already knew what to do, but it is good to have someone else there to help the first time. Our plan was to give Cole his meds starting at 10 pm and then again at 10am. That way he would be asleep. Well, it didn't work out like we hoped. We had to scrub onto the line, which woke Cole. Then we had to hook up the pump and start the first of two medicines. Within 10 minutes the alarm on the pump was sounding. Cole was pissed off!! We figured out the problem, but Cole continued to scream for an hour. Del tried everything to comfort him. Throughout the night Cole woke, screaming. Our best guess was that he was having some sort of night terrors.
    Saturday Cole seemed a little fussier than usual, but he slept great that night. Sunday everything was great. Cole was in a fantastic mood. And things seemed to be back to normal. I even started doing an update, but Del needed a bunch of computer time to do bills and things. (Yeah, I learned a long time ago that Del is faaaaarrr better than me when it comes to finances).
    All seemed well, until today. Our regular home health nurse came out this morning to do labs. Well, just when things were going smoothly, Cole's PICC line clotted!!! Sheila was unable to work it free with saline or heparin, so Del called our local GI to refer us to Carolinas Medical Center (CMC) to get them to flush it. Del's story, as told to me goes like this: They got in and were sent to the radiology department. While there the tech tried to thread a thin wire through the catheter in order to break up any clots. The problem was that the #3 catheter was to small for the wire to get through. After several attempts the tech stopped and said we would have to put another PICC in and they wouldn't be able to do it until tomorrow. Well, Del certainly wasn't going to let them put another PICC in. And besides Cole was overdo for his antibiotic as it was. She asked the tech to try to flush it with TPA, a medicine that would break up the clot. The tech told Del that the don't do TPA on PICC's. After a brief discussion, Del talked the tech into calling the PICC folks in Cinci. The Cinci team told them that they use TPA and even gave them the exact procedure to do it. The tech got the doctor on the phone and after explaining it to the doctor, the guys at CMC decided to give it a try. Sure enough it worked! The doctor came back in later and told Del, "Looks like we have a new protocol for PICC lines." They said they documented everything and if this happened again they would know exactly what to do. At first Del was very discouraged in the fact they were going to give up so soon, but in hindsight at least the docs at CMC were open to new ideas. And maybe Cole's little clotting issues today will help another child so they won't have to get stuck more than necessary.
    And last bit of news for the day is Cole's labs. They are showing some problems. Cole's AST ALT and bili continue to be normal. The labs showed his GGT and Alk phos jumped up. This could be a viral thing or it could be the bile duct stricture finally showing up in his labs. To treat the possibility of a virus, they have started Cole on Acyclovir. Cole's neutrophils are also very low. Neutrophils are part of the white blood cell and are a component of the immune system that attacks bacterial infections. They may be low because of the pseudomonas, but the problem is they are very low. At Cinci they gave Cole some neutrogen to increase his neutrophil stores, but it has fallen since. The neutrophil is produced in the bone marrow, along with the hematocrit and hemoglobin. So the concern may be that Cole's bone marrow just hasn't kicked in to high gear after the transplant. I remember the transplant surgeon saying that this sometimes takes a little while to get going. The plan meanwhile is to continue the neutrogen until he has ample stores to fight bacterial infections. As of today's labs Cole's H & H are holding steady since his last transfusion, which is good. At least they haven't dropped. And the final concerning lab value is Cole's Prograf level. The amount of his immunosuppression drug in his blood is high. The docs want his level to be between 8 and 11 at this far out from transplant. Cole's is 22! They can't seem to figure out why it is jumping around so much. While in Cinci it went high for a while, so the lowered his prograf dose. This time they want us to hold tonight's dose and then reduce the amount we draw tomorrow morning. This whole thing is getting a little frustrating to say the least.
    While in Cinci we were fine. In fact, I saw God working in so many things. It was awesome. I had much needed quiet and devotional time, and I even finished my latest book, "Life of Christ. God's word for the biblically inept series" It was perfect for me. Del even was in good spirits. But today I think Del has hit a wall. She is feeling very drained, physically, emotionally, and spiritually. She has been a little snappy and out of sorts actually for a few days now. I think she really could use a prayers tonight. Please continue also to pray for our little guy. He has been through so much. In total he had 19 sticks for IV's, a minor operation to have his broviac pulled, an endoscopy, colonoscopy, CT scan, PICC procedure, has been NPO four different times, been sedated twice, anesthetized once, had uncounted nurses holding him down to do various things from unkink his line to take his blood pressure; all of this in 6 days. But the one thing that still remains is I am confident God is in control and knows exactly what He is doing. It was Del who told me this analogy, and forgive me if I have told you all before. But consider all the things that go on in the world as God's tapestry. Being so small, we can only see a few of the threads of our lives. Sometimes those threads are beautifully colored and perfect, other times they are tattered and broken. But God sees the entire tapestry and He has woven it to perfection. And in the day of our glory we too will be able to see the entire gorgeous tapestry God has created and those broken and tattered threads will make sense in the overall design of this wonderful piece.

November 16 -
    Wow! What a weekend! I have so much to update you all on I'll just start with a more detailed version of how this all happened. Friday morning Del went in at 8am to give Cole his prograf. It is very unusual for the little guy to sleep that late. I was up already brushing my teeth, when I hear a firm and somewhat panicked, "Dave, call 911. Cole is burning up!" Cole's face was bright red. Del was holding him and he was limp and listless. He looked very very sick. She started to taking his temperature and it just kept going up and up, finally stopping on 104. For a transplant kid this is very alarming. I dialed 911, gave the dispatcher the low down and told them our address. They said to keep an eye on Cole's breathing and they were on the way. We tried to get ourselves ready as we watched Cole and got Anna dressed. The plan was fro Del and Cole to go by ambulance to the hospital, and I was going to drop Anna off at school then come up there. 15 to 20 minutes later the first responder arrives. The ambulance comes a short time later. It appears our address isn't on their maps so they had to find out how to get to our house. Now we have lived in this house 3 years! You think they would know where how to get here. I even told them the community we live in when I was on the phone. It is a good thing this was not a life and death instance where seconds count! Del and Cole drive off in the ambulance and I am frantically running around trying to get Anna, (who is not being very cooperative) dressed, fed and in the car. I also had to make arrangements for someone to take Anna after school. The Buchanan's daughter goes to school with Anna and the two play great together. They also live in the neighborhood, so I called them and arranged for them to take Anna until Del's mom and dad could get here. I get Anna to school and realized I forgot her lunch; well at this point the morning was so frantic I am lucky I remembered to put her in the car. In fact by the time I got to the hospital I realized my fly was WIDE open. Oh well, At least I had pants on. I found Cole and Del in the ER. They had drawn labs on Cole and were talking with Cinci. They decided to start Cole on broad spectrum antibiotics and admit him to the PICU. Cole was still looking awfully sick. In the PICU Cole started coming around. The antibiotics were working. By the third hour he was feeling so much better. He managed a smile and even ate a little. They said if he continues to do well, they would move us to a regular room. We were so glad to be heading out of the PICU. The CMC PICU is a great place, but the accommodations and rules are very strict. The family couldn't sleep in the room at all. They could stay all night, but if they fell asleep they would be asked to leave. There was no bathroom in the PICU. You had to go out the secure doors and then get buzzed back in. In fact, even to heat up a bottle you had to go the visitors waiting room located outside the security doors. When I first asked where to go to heat up a bottle, the nurse said, "Just use the microwave in the staff lounge!" So I did. But the second nurse told me I couldn't and showed me where I had to go. What a big pain! On top of that they only had 2 ounce bottles, so I had to go back and fourth several times. It actually got quite humorous. I would go by the desk with a bottle, go out, warm it up, pick up the phone to get back in, "HI, It's Cole's dad.....AGAIN!" Anyway, by about 8:30 pm Cole was moved to a regular room.
    One very cool thing is that we got to meet a very nice person. A lady named Lynn Anderson. Lynn had been e-mailing Del upon learning of Cole's story. She is the grandmother of a little boy named Bailey, who had BA and was transplanted in November of 2001 (I think). Anyway, Del and I had gone home to pick up Anna, and pack a few things, while Del's parents stayed at Cole's bedside in the PICU. When we got back I kept Anna in the waiting area (no kids under 12 in the PICU) I was playing with Anna when a lady came in and sat down. We played a little and she heard me say Anna's name. This lady said, "Are you Dave Jackson?" I was a little shocked, how did she know me? She said I'm Lynn Anderson. Apparently she had read the website about Cole being in the hospital and since she only lived a few minutes away, she wanted to come meet us and support us. That was awesome! We talked a while and when Del came out she showed us many photos albums of Bailey through the years and shared many many similar stories. How cool is that? God brings families in crisis together for support. Thank you for doing that Lynn.
    Before leaving the PICU, the attending doctor with Infectious Diseases (that doesn't sound good does it?) Lets call her the ID doctor. Looked at Cole broviac site and said that it was an obvious tunnel infection. Which basically means that the tissue under the skin around the line were infected. She said the only way to properly treat it was to remove the line. A mixed blessing; it meant no more easy no pain blood draws, but it also means no more dressing changes on the site, no more flushes of the line, and most importantly no more infections. The part that makes us frustrated is that the site looked just like it did when Cole came to the ER on Monday. That is one of the reasons we brought him into the ER. He had a low grade fever and his site was red and had discharge. At that time the only doc to look at the site was a first year resident who knew very little about central lines. In fact, Del overheard her outside Cole's room ask someone else how to culture the site! Del partly blames herself. She feels she should have pushed for someone else to look at it. And in hindsight she is right, but Del is not the medical expert (although both of our degrees from the "Hard Knocks School of Medicine" should be arriving in the mail any day now) Seriously though, it is an ER, if you don't know the answer, find someone who does. All it would have taken was a peek from a more experience doctor or even an IV nurse to tell the site was badly infected and the further progression may have been avoided. This was a failure in the ER. But we all make mistakes, just when a doctor makes a mistake people can really get hurt. I know I have made plenty of mistakes myself, But even my biggest mistake doesn't have the potential consequences of a doctor making a very small mistake.
    The orders for Cole were to stop solid food by 4 am and clear liquids by 8 am. The surgery to remove the broviac was scheduled for 10am. The night before, Cole didn't drink or eat much. He took a few small bottles up until 8pm and then refused his 11 pm bottle. We knew this little guy was going to be famished before the operation. The following morning he was. They also had scheduled an ultrasound for the morning, but we didn't know that. In fact the nurse didn't even know that. A transport person came to get us and we all figured he was there to take us to the OR early. We were psyched. We figured we could get this line out early and Cole could start eating. By the time we figured out they were taking us to have an ultrasound it was nearly 10. They decided there was no way we could get it done before the OR time. So they pushed it back. To make the matter worse, we soon found out we had been bumped from the OR by a trauma. They told us that it would be around noon when they could get the operating room. That meant we had to reschedule the ultrasound. This also was getting somewhat comical. But for Cole it meant going longer and longer without food or water. They were able to schedule and they started scanning around 11:30. We knew it was going to be cutting it close to the OR time, but they could wait! Cole actually fell asleep during the ultrasound. He was so exhausted from screaming in hunger he just crashed. During the ultrasound they were checking for any strictures in the bile flow. And the scan showed nothing out of the ordinary. We went back to the room and it was about 12:20 when we got the call to come down to the OR. At this point Cole had been without food or water for 19 hours. But my big man did great. He loves being wheeled around in the crib. Once in the OR area Cole sat in his crib and played, he even smiled at the doctors and nurses as they talked to us. The doctor said the procedure itself would only take about 5 minutes, the prepping would be longer. They would put in a peripheral IV to administer the OR meds and then leave it in to finish up the antibiotics. The procedure went smooth and there was nothing unexpected. In recovery Cole slept in Del's arms until we were rolled back upstairs to his room.
    We say another person who had come over to support us. John Agresti, the news reporter for News 14 had also read Cole was readmitted and wanted to stop by on a personal level and see how he was doing. His fiancée is a nurse at CMC and they were heading to our room as we passed them on our way to the OR. I think it is so awesome to have someone who has been touched by Cole's story take the time out of their day to come by and see how we are doing. This is just one more example of the innumerable acts of love and kindness we have experienced through this. Thanks John and Stacey, sorry we couldn't talk, we had a date at the OR.
    Back to Cole... Cole was groggy the rest of the day, but slowly he started coming around and eating more and more. One funny thing was Cole would try to sit in his crib and he would be fine for a minute and then all of a sudden...BOOM.. down he went. He never got hurt, but he didn't have his sense of balance back.
    On the discouraging side of the day, we got Cole's labs back yesterday evening (11/15). His LFT's are still perfect, but his H & H had dropped to 6.9 and 23. His white blood cell count was down to 2.3, his albumin was down to 2.0 and his prograf level was up to 25!. We immediately knew Cole was going to be going up to Cinci to get scoped. We got on the phone to Cinci and told them the lab results. Apparently none of the CMC docs had read the labs yet. Cinci wanted Cole transfused immediately. They also wanted his prograf dose cut in half. They said they were going to med-flight us up there either Monday or Tuesday. But in the meantime, they needed him more stable. Del and I immediately got on the phone to round up the grandparents for another stay with Anna. Cinci told us to plan on being up there 8 or 9 days. That means we may be having Thanksgiving at the Ronald McDonald House of Greater Cincinatti. We then get a call from the transplant coordinator, she tells me that she can't get in touch with any of the Cole's regular docs to order the transfusion and lowering of the prograf dose. She finally gets the ID attending doc and she is the one who puts in the orders. I'll tell you one thing the ID doc is awesome. Her name is Amina Ahmed (sp?). Not only is she very sharp and extremely bright, but she is also great at explaining things, she has a terrific bedside manner, and she has a rare, unspoken, unobtrusive err of confidence. She truly seems to know what she is talking about. So at this point the orders are in and the plan is to fly up to Cinci Monday.
    Since both Del and I both had stayed with Cole the first night, and neither of us got much sleep with all of the beeping monitors, nurses taking vitals, and Cole screaming in between, we decided Del would go home, pack, and get a good nights rest. I would stay with Cole through the night. But before Del gets to leave, Cole loses his IV. It had clotted off and a new one would need to be started to get the antibiotics and receive the transfusion. The nurse called the IV team. I told Del to go home, I could handle whatever needed to be down. It would be a while before the IV nurse could come down to Cole's room, so I played with Cole, gave him his bottle, and put him to bed, knowing that they could come at any time. But I figured it is better to stay on schedule at least as best as we can. Sure enough 15 minutes after Cole had gone to sleep in comes the IV nurse. I warned her how hard he was to stick, and I proved to be right. She first tried the foot and that line quickly blew. She finally managed to get it in his left wrist. At this point they decided to give Cole the transfusion first and the antibiotics could be pushed back. The transfusion takes 4 hours total. Cole slept through most of it. The nurse had to come in every 15 minutes for the first hour and take his heart rate, temperature and blood pressure in order to make sure he wasn't reacting to the blood. Of course this meant from 9:30 pm to 10:30 pm Cole woke and cried every 15 minutes. Then the protocol is to do vitals every half hour for the next three hours. At first I would get up and help or let Cole see me to let him know I was there, but by midnight Cole was so tired, he cried out for just a minute and then went straight to bed. He ended up sleeping pretty good the rest of the night. He would occasionally wake when the nurse came in to change an antibiotic or reset a beeping monitor. But this kid was tired, he had gone 19 plus hours without food or water, had an ultrasound, an operation to remove his central line, been poked several time to get an IV, and had been squeezed and listened to throughout the night. He had had a very busy day.
    I woke feeling pretty good. The bed was comfortable, I slept well, I got a lot of reading done. One of the very small things a like about being in the hospital; at least for what it's worth; is... God gives me time to read His word. I think I spend more time in one day reading my bible than I do in a week outside the hospital. I also find myself communing with the Lord more during our stays. I don't mean just praying to God about Cole, but having some needed quiet time to just draw closer to Him. God is convicting me of my habits at home!
    Cole did fantastic throughout the day. He isn't his 100% chipper self, but I think it is because of several things. First, I think the broviac site still bothers him. He still scratches the area quite a bit. I also think he is tired of getting messed with. He is getting old enough to get downright ticked off. And finally I think he is simply bored of the hospital and longing for home. I mean how much fun can it be to either play in your crib all day or play on the couch.
    The day went smoothly up until the time I was supposed to leave. At that point Cole's IV blew again. This time I left Del to deal with it. I went home to pack, update, and run 80 minutes (ouch). Del called me later to tell me they looked for a good vein and decided to put it in Cole's head. The nurse on the IV team who suggested it was Donna Heummer, Cole's primary nurse when he was born and in the NICU. She loved Cole and still does. We trust Donna's advice and opinion. The sight of an IV in the head is always a scary sight, but an IV in the head is more unsightly than uncomfortable. In fact it is less painful than the arm or leg and, Cole has full use of all his extremities. Del told me Cole didn't even flinch when they stuck him. She also said it went in smoothly and looked to be a good line. 15 minutes later she called back, the line had blown. She said the IV team left and Cole was playing in his crib, he was getting a little fussy and fell backward on the bed. Del went to sit him back up and there was blood everywhere. She said it was a lot of blood and she panicked a little. She yelled out into the hall that Cole was bleeding from the head. The nurse came running, but it was because the line had come out that he was bleeding. The vein at the top of Cole's head is a big one and it just put out a lot of blood when it came out. So they weren't sure what to to do. He needed an IV, but where would they put it? They called the flight crew that transports people by air. They said they are some of the best IV people around. They can stick while moving, in the dark, all kinds of difficult situations. And sure enough they got a good IV in Cole's arm first try. Please pray this one holds. After all this IV chaos, Dr Ahmed, decided they are going to put a PICC line in tomorrow. This is a deeper line IV and will be done in the OR, I think. It is in the shoulder area, but not as deep and tunneled as the broviac. I am not sure the time this will take place, but sometime tomorrow. They didn't want to put a PICC line in sooner because the blood cultures hadn't "cooked" the entire 3 days. The blood cultures have not grown anything, but they wanted to at least cook them 3 days to rule out a blood infection. If a PICC line is put in and the blood is infected it can lead to more serious problems. But negative blood cultures are a direct answer to my prayers. It looks like Cole's fever and sickness was do to a site infection of pseudomonas. But this site infection does not explain his low H & H, blood in his stool or low albumin. It can explain his low white blood cell count though. But in order to bring his white blood cell count up more quickly, they have taken him off the Gancycloveir. This is an antiviral that can cause low WBC, but it can also open Cole up to viral problems. The other thing doctors are closely watching is Cole's EBV load. EBV could explain the blood in the stool, the low H & H, the low albumin, and Cole's snoring. (Cole is beginning to make a little more noise when he sleeps) EBV in transplant kids needs to be watch very very closely. If left unchecked it can lead to cancer. The problem comes when treating for EBV. One of the first things to treat EBV is GANCYCLOVEIR! The second, is drastically cutting or even removing Cole off of his anti-rejection medicine, prograf. We need prayer that this is not EBV!!
    I'll try to update while in Cinci, but things can get hectic and since we are taking a medical flight we can't take our laptop (not enough room on the small plane). But I will try to use the computers at the RMH, if they are working. Pray for Cole and our trip.

November 14 -
Quick update before we run back to the hospital! Cole was rushed by ambulance to the ER this morning. He had 104 degree fever and was very listless. It has been determined that his central line has a tunnel infection. The docs are saying the line has to come out in order to treat the infection. The operation to remove the line will probably be in the morning. After 3 hours of being treated with antibiotics, Cole had improved dramatically. His fever came down and he was able to crack a little smile. He even ate a little. More than likely he will be in the hospital for several days at least, while we wait for the new blood cultures to come back. It may be that he has several things going on. We need prayer that whatever is going on is quickly identified and properly treated. Our Lord is so awesome. Even now we have prayer constantly answered. Thank you Lord for making Cole feel better than he was this morning! Thank you for the rapid response of the medical staff, thank you for the wonderful hearts of our friends and neighbors who without notice, helped with our daughter, our home, and our spiritual desperation. I'll update more later or tomorrow, depending on whether I stay at the hospital tonight.

November 12 -
    Wow! Where do I begin? For nearly three weeks everything has been very uneventful and then all this. First off, Cole and Del arrived back home from the ER Monday night around 11 pm. The docs there ran almost all the tests Cinci wanted. They were unable to get a stool sample to check for C-Diff and other bacteria. They were also unable to get a urine sample. Del said the tried to cath him twice, and still no luck. Poor little guy screamed his head off the entire time. Apparently he forgot what it is like to have stuff done to him. They even had to stick him to get blood from another site, just in case his central line is infected. Cole was so puffy from crying so much. I am glad Del was the one who went with him, she was able to catch some things. First they were going to draw 30cc's of blood for his labs! She quickly put a stop to that and made them draw the minimum amount. Remember, Cole's H & H is low already. Also they were going to try to cath him a third time, but Del said that was enough and told them they were going home. The next morning I, Dave, took Cole into to our local GI. He had the labs back. All his liver numbers are still awesome, but is H & H is once again low. Also I brought several hemocult cards with stool samples on them and they all tested positive for blood. So he is still losing some blood in his stool. How much and from where are still the big questions? However, on the up side, Cole seems to be feeling better. He is still a little fussier than usual, but not bad.
    The one test the CMC lab did not run was the EBV Quant. That is the test that shows the EBV viral load present in Cole's body. So the home health nurse had to come out this morning.
    Yesterday started off pretty good. Then around noon, I started feeling nauseas. I tried to eat, but only felt worse. I was going to go for a run, but ended up laying in bed. Del also seemed very tired. I started feeling sicker and sicker. Finally it hit me! I was running at both ends. I couldn't make up my mind what to do first, throw up or sit down! I was seriously down. Then an hour later it hit Del the same way. What were we going to do? Anna started having diarrhea about the same time, but didn't get sick until 3 o'clock this morning. Last night was absolutely horrible. It seemed one of us was either on the pot or our head in the bowl. We prayed a lot! We prayed that Cole wouldn't get it. We ended up putting the kids to bed early last night. Anna was sick and we didn't want Cole to be around any of us. no one in the house slept last night. Even when no one was in the bathroom, we felt too sick to sleep. Anna came in our room several times, saying her tummy hurt. Cole cried a lot throughout the night. I don't think he felt bad, I think we were keeping him awake. This was the serious stomach flu. And it hit all of us at once. Del's mom is on her way here now to help out. We all feel better, but still not well.
    This could be an explanation for Cole being sick Monday. Remember he had diarrhea and a low grade fever. That is two of the reasons we went into the ER. All of us last night also had a low grade fever. Maybe Cole didn't get the full blown flu because he is on a bunch of "anti-everythings."
    The labs also showed Cole's Prograf level was low so in addition to EBV, the home health nurse drew Prograf level as well. Del and I were not functioning very well this morning, so it is a good thing Sheila, the home health nurse was there. She was able to do a dressing and cap change as well. She noticed his site was red and she called the CMC lab to see if the cultures were back. Unfortunately the site is showing light growth of pseudomonas. The blood still has grown anything, but they will continue to "cook" the cultures for 5 days. We called the transplant guys in Cinci to see what they want us to do about the site being infected. They are supposed to round and discuss it at 1pm and give us a call back. I wouldn't be surprised if they want us to come back up to Cinci. They may even want to pull the line. They had been talking about pulling it December 1st, so it is not that early. It would be sad to lose the line, that would mean Cole would have to get stuck again for labs, but it also means less trauma in the upkeep of the line. It has to be flushed daily, dressings changed 2-3 times a week, and the cap changed once a week; none of which Cole is very fond of. So we will wait and see.
    We could use prayers for improvement in Cole's hemoglobin and hematocrit, prayers that this site infection goes away, prayers that it doesn't get into his blood stream, prayers that he doesn't get this wicked stomach flu, prayers that his EBV load is still low, and; while your at it, prayers that Anna, Del and myself quickly get over this bug.

November 10 9:00pm-
For all of you wondering why we haven't updated the journal in so long it is simple. There really hasn't been much to say. That is until this evening! All day Cole had been running a low grade fever. Not high enough to run him into the hospital, but enough to keep an eye on. Throughout the day Cole had diarrhea. Not the real liquid kind, but looser than usual and very explosive. He wiped out four outfits by the afternoon. And I mean wiped out. Poop everywhere. He was also much more irritable throughout the day. He is still much better than he was pre-transplant, but just fussier. You could tell he wasn't feeling good. We placed a call to our transplant coordinator this morning. By the afternoon she hadn't returned our call so we paged her again. Still she did not return the call. Finally after dinner, Del was changing a diaper, and this time it was contained within, when she noticed his central line site was much redder than usual. Del also noticed that there was some discharge from around the site. This time we placed a page to the liver transplant doctor on call, who immediately got on the phone. It was one of the transplant residents who told us to take him to the local hospital. The doctor told us to have the hospital run his regular labs (CBC, LFT, Coags, renal) and include in the labs blood and site culture. Based on what I told the doctor, she didn't think Cole would need to be admitted. She said they would probably let Cole come home while the labs were pending. However, they may feel he is too sick and need to be treated right away. After I got off the phone with Cinci, I then placed a call to our local GI doctor, and told him what was going on and asked if he could call the ER and place the order for the labs. I figured that would expedite the whole process at the ER. Del then left to take Cole while I stayed home with Anna. Shortly afterward our tx coordinator called and said we needed to add a stool culture to the labs to test for C-diff and other bacteria. She also said, we might as well get them to draw a prograf level since it was minutes before he was do for the medicine. The blood needs to be drawn at or very very near 8 am or pm, just before his dose in order to get an accurate trough. I then called Del's cell phone while the coordinator was on the other line to relay the message. Cole had already been wisked into a separate room and doctors there were already starting to work him up. The timing was near perfect! This means that Cole will not need his usual labs drawn tomorrow. As of now, I am still waiting to hear from Del to see if they are getting to come home. Please pray that this is not anything serious. Remember the pseudomonas infection Cole got in Cinci. He was in the hospital for 2 weeks. Of course that was battling several different infections, but with any infection, it can lead to rejection. Our God is strong, wonderful and merciful. He can heal Cole if He chooses. Our faith is that He will be with us whatever the problem or outcome.

October 24 -
    I will start this update beginning the Wednesday, the morning we left for Cincinnati. Our plane left early so we had to be up and out the door by 7:00am. Everything went super smooth. We made it to the airport with time to spare. We even remembered the stroller this time:-) Cole did terrific on the flight, smiling and playing the whole time. There were no glitches getting the rental car. Everything going up was flawless. Even the visit itself went well. The best news of all was Dr. Bucuvalas said Cole looked to good to scope. YAHOOOO!!! He said Cole was clinically stable. Cole was showing no signs of being sick. His liver numbers are even PERFECT! His H & H is still down a little. The last lab showed his 9.6 and 29.9 and this week it had dropped to 8.8 and 28.9. The doctor said he considers this relatively the same. To me it looks like it dropped, but as we have learned one lab doesn't make a trend. The doc did say that if Cole's hemoglobin drops below 7, low enough to need another transfusion, then they will bring him back up to scope him. But as for now Dr. B is just going to watch his H & H and albumin very closely. He said not to worry about testing Cole's stool for blood, he said the numbers will reveal anything significant. He said it is somewhat of a gamble to wait, but he also said that even if they found something he wouldn't really know what to do. Meaning, Cole is acting well and his numbers are fine, so why put him through the trauma of scoping. Del and I both agreed that we will just wait and watch his labs. It seems the best thing to do at this point. So once again God answered our prayers in his own way. We don't really have an answer to the low H & H, but Cole was not scoped.
    The only disappointing news was that Cole has converted to EBV positive. What this means is that the Ebstein Barr Virus is now present in Cole's body. Remember, I had mono when I was a kid, which is EBV. Therefore my liver was EBV positive; so is the majority of the population. EBV in a nutshell is the mono virus. When the viral load gets too high it can cause significant problems in transplant kids. The theory is that EBV somehow reacts with the anti-rejection meds and if left untreated can lead to something called PTLD, which is halfway between mono and cancer! The viral load is carefully measured every other week in lab draws. If the load get too high the treatment will be to lower or take Cole off the anti-rejecition meds, treat the virus and get it under control, then resume immunosupression meds. Sometimes the virus cannot be controlled and this leads to PTLD (click here for a more in depth defintion of PTLD) This definition is a little scary so you can see we still need prayer. PTLD stands for post transplant lymphoproliferative disease. It basically a preclude to cancer of the lymph nodes. Most kids, if given an EBV positive organ will convert within the first year. So we were not too suprised. I think the suprise comes because it happened so quickly. It is better if the they convert while on lower doses of immunosupression meds. The higher the doses the greater the risk of getting PTLD. However, only about 8% of the kids who convert to EBV positive post transplant will get PTLD. It is just one more thing to watch, wait and pray about. Even kids with PTLD don't necessarily get cancer, so we are still a long way away from the big "C" word. But we absolutely request prayers that this does not evolve into something severe.
    We were actually able to go straight from the hospital to the airport and catch a plane for home the same day. One funny thing happened at the airport. Well now it seems funny! The drill to get through airport screening is to take Cole out of his protective bubble stroller (We got a clear rain cover that goes over Cole's stroller. It keeps germs and people out, and works great, unless we take him out!) Del quickly takes him out of the safety of the stroller and goes through the metal detector, keeping him away from other as much as possible. Once the stroller goes through the screener, she places him back inside. Well, this time the detector went off as Del and Cole went through. This led to them BOTH getting patted down. Del told the guy doing the frisking that Cole was immunosupressed and we had to be careful about exposing Cole to others. But this guy had to do his job. He was nice enough. He put on fresh gloves and carefully searched first Cole and then Del. The plan was for me to take Cole while Del got searched. Just then our bag gets pulled and they said there were two scissors in the bag and they had to get them. I am starting to freak out a bit at this point. Several security guys start heading towards us and Cole. Del and I begin to get nervous, not because we have something to hide, but all these people are heading toward our immunosuppressed child. I nearly lost it. I was about to just bust and tell everyone to back the "H*LL" away, but common sense prevailed. I could just see seven security guards tackling me, Del screaming get off him, and the guard with the runny nose holding Cole. What a nightmare that would have been. Anyway, I told them to just wait on the bag until I could give Cole to Del, at that point they could open the bag. I am not sure if they were as nervous as us. When they opened the bag I remembered that the hospital had given us 2 dressing change kits, containing scissors. The guard wanted to open the kits and take out the scissors, but I had to explain to him they were sealed in a sterile plastic kit and if opened the wouldn't be sterile anymore. He was saying "I'm sorry but you cant take those on the plane." Del burst out "But we need them." as she flashed Cole's central line sticking out of his chest. At this time the supervisor had made her way to the commotion and after we told her the situation, she looked up the scissors in the official "rule" book, and pointed to the fact that unless we had made prior arrangement with the airline, medical supplies containing scissors were not allowed. Del was nearly ballistic. All this had come to rest when I said, "Well, why don't we just check the bag." DUH!!! The security guys were thinking we needed the scissors to use on the plane, but we just wanted them when we got home. Can you see us doing a sterile dressing change on a plane? We finally were able to board the plane and got home around 7:00pm. We tried to take a picture of Cole getting patted down for his baby book, but they wouldn't even let us do that.
    So now we are home and back on our normal routine. Cole is still doing great. He was a bit fussier yesterday, but we learned he was getting another tooth. Anyway fussier these days is a mole hill compared to the mountain it used to be.

October 17 -
OK. We heard back from Cincinnati about what they want to do next week. As it stands now, we will be having our home health nurse come out Tuesday and draw Cole's labs. Then we will fly up to Cinci Wed morning at 8:50am. That morning Cole will have a GI appointment with Dr Bucuvalas, who will make a final decision to scope or not to scope Cole. His decision will be based on Cole's Tuesday labs and how well he thinks Cole looks. So, here is what we need. We need prayer for great labs Tuesday. Specifically, that Cole's Hematocrit and Hemoglobin go up, as well as his normal liver function test improving. We also found out that the scoping not only involves going in from the bottom, but down from the top as well. If the scope is ordered, Cole will have an endoscopy and colonoscopy at the same time. If a decision is made to scope the scenario will play out like this...Wed am doctors appointment. Afterward, Cole will be admitted to Children's, he will have an NG put back in (we all know how fun that is from previous experience) and he will be given a "cleanser" called Golytely. And let me tell you it makes you go, but not lightly, if you get my drift :-( At some point Cole will be taken off solid foods, which should make for a very irritable baby, and Thursday morning he will be sedated and the procedure will be done. If Cole is scoped, we probably won't be able to get back home until Friday at the earliest. The scenario may be very different if the doctor decides not to scope Cole. It may be as quick as flying up and back on the same day. With all of this last minute stuff, we waited to get our plane tickets. Get this it will cost us a whopping $2,300 for us to fly up and back, and rent a car and hotel if needed. That is the price you pay for flying last minute and flying during the week. For anyone questioning why we needed to fund raise, just think, we may have to do this every month!! At least for the first 6 months. As time goes by, with no complications, the doctors will spread out the visits. After 6 months it will go down to every other month, then once every 3 months and so on until he gets down to once a year. Praise God for sending us the wonderful support we have received from our community, friends and family.
As far as Cole's mood goes. He is still doing awesome. That is one of the greatest gifts God has blessed us with. Cole is standing, leaning on things now. He still can't pull up, but if you stand him next to something, he hangs on for dear life and smiles proudly. He does have some red cheeks though. No temperature, but maybe his cheeks are red from the wind. We were outside a little yesterday. Or maybe his H and H is coming up. That would be cool!

October 14 -
    A quick update on Cole. He is still doing great. He continues to grow and blossom as a new little boy. He seems to be so amazed by everything. He had a leaf in his hand yesterday. He held it between his two tiny fingers, waving it around, and proudly smiled like he just discovered something fantastic. It is truly an incredible change from the sick pre-transplant Cole. We had labs done today. Cinci ordered labs to be drawn only once a week now. This will hopefully help raise his H and H. Cole's numbers continue to improve. AST and ALT are both normal, his GGT has now dropped to 85, (YAHOO!), his H and H is better, but still a little low, and his bili remains perfect. God has truly touched our family. We only have one bit of discouraging news. As you may remember the GI last week found blood in Cole's stool. Cinci ordered us to smear hemocult slides with samples for 6 consecutive days. At today's GI visit, all the samples tested positive for blood. What this means is a mystery. We are going to Cincinnati next week for Cole's regular monthly checkup, and at that time they also want to do an upper GI scope on Cole. In their gut, they don't feel that it is anything to be alarmed about. It may only be an irritation or a small scratch in his bowel, I guess it could even be a little hemorrhoid. But blood should normally not be present in stool, so this is not something the want to let slip. It needs to be investigated. Please pray that whatever it is causing the blood is easily fixed and causes Cole no harm. The doc's said they will put Cole under anesthesia for only about 5 minutes. And the procedure, as I recall :-), is not painful. I just am not sure what kind of prep work he'll need to undergo. I remember my prep work was the worst part. Anyway, I may be getting to far ahead, at this point we don't know what is involved with the procedure. This will be Cole's first colonoscopy. Hey look! Another milestone for Cole. It sure is a lot different than most kids milestones. I know I was 33 before my first colonoscopy.
    This blood could still be significant enough to be causing his H and H to remain low. So we need prayers that this Hematocrit and Hemoglobin issue is resolved.
    As of now we don't know what our plans will be for next week. We may have to stay several nights. Hopefully, tomorrow we will know more.

October 8 -
    Hey everyone! Sorry it has been over a week since we last updated you all. As you may have noticed the website was down for a while. It seems you all crashed our neighbors server. We were getting so many hits that their server just quit. Our neighbors who have been hosting this site are great. Jim and Julie Moeller have done a fantastic job keeping this site running for so long. Have you all noticed the counter on the homepage... it is low now, but before the first server updgrade we had reached nearly 35,000 hits. Then before the server went down this past time there were almost 10,000 hits. Remember this is a personal webpage, being hosted by our friends and neighbors home server. That is amazing. First of all it is unbelievable that so many of you are interested and keeping up with Cole. (Although, probably 10,000 of those hits belong to our parents :-)) Secondly, it is amazing that the Moellers have been able to keep their server up for as long as it was. Especially in those intense days following transplant. Anyway, they had to order new parts to upgrade their server and it took a few days to get those parts in, but Jim has given it his all and got the server ready. Thanks so much Jim!
    Ok, now on to Cole. For the past week Cole has been acting and feeling terrific. Both his AST and ALT are normal and finally for the first time his GGT had dropped from the Monday labs. In the last several labs we have gone 158, 136, 135, and now 107. Remember the 20's are normal, so we still have a long way to go, but it definately looks like a good trend to me.
    We did have an interesting event happen Thursday. Cole is getting blood drawn for labs on Mondays and Thursdays. Thursday the nurse came out as usual at 7:45AM. Drew the blood, filled out the paper work, the currier came and took it to the CMC lab. Everything went as planned. That afternoon I got a call from Joyce, our new transplant coordinator. She asked if the had drawn labs, because she should have been faxed the results by then. She said she would make some calls and call me back. It turns our that the nurse filled out paperwork for Union County Hospital, the same paperwork that was filled out Monday. This time the CMC lab saw the paperwork and figured the blood was sent to the wrong hospital. They in turn couriered the blood to Union County, who upon receiving it had no idea what or who it was for so they left it sit around. By the time Joyce did some detective work the blood was to old to run most of the labs. They were able to get an accurate prograf level with old blood. Which was awesome, because in order to get an accurate reading the blood needs to be drawn at precisely 8:00am. However all the other tests required new blood. Joyce called the home health company and told them Cole was "too sick to wait until morning." They wanted the nurse to come back out to the house as soon as possible. The home health company contacted our nurse, who got the message, "Cole was too sick and needed her to go out and draw labs immediately." She rushed out thinking Cole was acutely sick only to find out the folks in Cinci meant he is still considered a "fresh" transplant and they didn't want to wait another 24 hours in case there was a problem. Anyway, the nurse was great and she has done a fantastic job. We don't blame her for the mix up. It is just one of those things that needs to be worked out. Cole absolutely loves her.
    There was one other home health issue that has been "worked out." Our home health nurse was told by her lab to draw 11ccs of blood for all the labs Cinci requires. This seemed like a lot of blood to us, so we made a phone call to the CMC lab. At first they said the same thing, but after careful negotiations we learned that the really only need 6ccs of blood. The other 5 are "extra", just in case. Well, 11cc's is a lot for a baby who only weighs 20 pounds. And remember he is getting drawn a minimum of two times a week.
    This has led us to our next hurdle. It was revealed in Cole's Monday labs that his H and H was low. The first H stand for hematocrit and the second H stands for hemoglobin. Hematocrit is the volume of red blood cells in whole blood and hemoglobin is the oxygen carrying component in the red blood cell. When these are low the child can be fussier, sleepier and paler in appearance. With a low H & H this can indicate blood being lost from somewhere. The question is where. Common sense tells us it may be due to all the blood being drawn out of his little body. This could very well explain the low numbers. But at Cole's local GI appointment Tuesday, they found some blood in Cole's stool. It is not an obvious amount. They smear a sample on a card and apply a chemical to detect blood. It showed that blood was present, but what it doesn't show is how much blood. It is not a visible quantity, but where is the blood coming from. It could be as simple as a small tear in the rectum or an irritation in the bowel, or it could be more serious. The doctors are unsure of where it is coming from. The doctors in Cincinnati who are in charge of Cole's care want us to get some of those hemocult cards and sample diapers on four consecutive days. At this result they will make a determination whether to "scope" him or not. So we know he has two possible areas for blood loss. The first and foremost are from the lab draws and secondly from the stool. So we will watch, wait and pray that this all works out with no discomfort for Cole.
    But this does not help out his low H & H, so on Tuesday the docs in Cinci ordered Cole undergo a blood transfusion. So all day Tuesday, Del and Cole were in the CMC Children's hospital. They went straight from the GI doctor. They first taped his broviac to get a blood sample to type and cross match. The cross match basically lets them test the blood Cole will be given to make sure they don't react with each other. Cole is given blood that is specifically CMV negative. CMV stands for Cytomegalavirus. CMV can pose a problem for immunosuppressed kids. Del was planning on taking Cole home for the several hours she was told it would take to get the type and cross results. The nurses, however claimed it wouldn't take that long. Well, 4 hours later, they had the results and Cole was hooked up to the blood. Next time we will know what to do. Del had called me and me and Anna drove up to bring Del and Cole some things to make the stay a little easier. The blood then had to be pushed through his broviac over another 4 hours. Del and Cole didn't get home until 7:00 that evening. The only thing I can say is "Thank God for the broviac!" Cole didn't have to get stuck once. Everything goes in   and out his blood stream through that line. This makes for a no pain experience. Although Cole still doesn't like to be messed with.
    Today Cole is a little bit more rosy cheeked and doing great. He is just such a happy little guy. These little bumps are small in comparison to some of the things that could be happening. God sure has been good to us.

    Sorry it has taken me so long to write an update. As you can imagine, being gone 6 1/2 weeks, the "to do" list at home has really piled up. I guess I'll start with..................YAHOOOOOOOO!!!!!!!! WE ARE HOME!! HOME, HOME, HOME!!! Ok now that I have that out of the way I'll get down to the how and what has been going on lately. First off, we all ended up driving home Friday. Del woke up and her back was still bothering her. But the story is much more interesting. The night before we left, when Del hurt her back, we thought that Del's discomfort might be a sign that God didn't want Del and Cole to fly on the plane. Well, that night Del prayed, "God, if you don't want me and Cole to fly, then please make it so my back hurts and I won't be able to get on the plane." When she woke up that morning she was feeling a little better, but still unsure whether she was ok enough to fly. I was trying to tell her that she could do it. I was thinking that an hour sitting on a plane had to be better than 9 hours in the car. Well, Del was unsure what she should do, so she again turned to God in prayer. This time she prayed, "God, I still don't know what I am supposed to do. Please give me a sign, like make the plane be delayed. And I don't mean delayed a little bit, make it very obvious." I kid you all not, within 30 minutes her cell phone rang. It was an automated voice saying that her flight was delayed 100 minutes. WOW!! That put Del arriving at home only shortly before I would arrive driving. I was astounded and still a little mad. But it was obvious to Del. I was still thinking how miserable she would be and selfishly thinking that the drive was going to be so unpleasant for me as well. I was imagining Cole screaming and fussing the whole 9 hours, Del unable to turn around and comfort him. I was picturing stopping ever hour or so to change a diaper or eat or stretch. I was thinking that the 9 hour drive just became 11 or 12 hours. I couldn't believe God did this. How foolish I was. To think I had trusted Him with everything up till then and suddenly He was wrong. So the drive started...everything was going smoothly....Del was doing ok.....Cole was doing ok. Wow, "OK God, if this is what you want then I am with you." Our fears about flying were not stemming from the chance of a plane accident, although I guess that is always a possibility. Our fears about flying were from exposing Cole to all the germs aboard the plane. All the people, all the bad re-circulating air. There was a very real possibility Cole could catch something. Flying wasn't the doctors first choice for transport either, but they were also aware of the amount of drive time, so they relented to allow them to fly.
    Anyway, we met Del's sister, Sarah, in Lexington, KY, at a McDonald's. We swapped some baby clothes and then she gave some pills. Sarah's husband is a general surgeon and he had some pills specifically for back pain. Del had to take them with food, but it would alleviate her discomfort. Man.... the drive went great. Del was happy and feeling only a mild twinge, and Cole....Cole was awesome. He played by himself in his car seat nearly the entire trip. He napped a little and babbled a lot. He only let out one little cry. And Del was able to turn around and entertain him for the 10 minutes that it took to soothe him. Near the end of the trip, the pills Del took were beginning to wear off, so she decided to pop some Alieve. We were about 1 1/2 hours from home when Del started looking for something in the back seat. I asked what she was looking for and she said something in case a "get sick." "Are you kidding me!", I said. Next thing I know Del says pull over NOW!!!. We were in the mountains outside of Ashville, there was no where to pull over. Suddenly a small section of shoulder opened up. I slammed on the brakes, Del flung the door open and out it came. Man, did she hurl!! The nearest we figured was that she took the Alieve on an empty stomach and her body just said, "No Way!" She felt so much better. Afterward, she did criticize me for not jumping out and holding her hair back. But I don't even think I had the car completely stopped before the "chunkin'" Besides, what guy who is already married would really do that. I mean it is one thing if you are still dating and trying to make a good impression, totally another after 9 years of marriage. (I am just trying to be funny for those of you who think otherwise) Del had one more episode and once again we were unable to stop do to traffic in Charlotte. This time she heaved into a hospital bucket we had scrounged up just in case. We were miles from our house and she had no choice but to ride with the bucket on her lap, sloshing around, hoping I didn't hit the brakes too hard. :-) I had the windows rolled down so I could still keep my lunch down.
    Next thing we know we are driving down our very own street. Sure enough there are about a dozen people, friends and neighbors outside our house waiting to welcome us back. And Del still had the puke bucket on her lap. Ha! Ha! As we pulled up, Del slide out the side and slyly threw the bucket behind a bush. But it was so wonderful to see everyone. Thank you all for coming out to welcome us home. I can't begin to tell you how truly blessed we are to have such a wonderful community. They had a big sign that everyone had signed. Our church got us several flats of mums. They were arranged in the shape of a heart in our front yard. It was all a bit overwhelming. But few people saw Del. Anna had literally wrapped her arms around Del and would not let her go. It nearly brings tears to my eyes even now. Del took Anna away and they played together while I socialized. We had only seen Anna 4 days in the past 6 1/2 weeks. Del's main focus was where it should be, on Anna.
    Cole was a little shy at first, but gradually started showing everyone his new marvelous smile. People were great. They knew enough to stay well away from him. Nobody wants to get Cole sick and send us back to Cinci. Of course Grandma ran in washed her hands and was able to love on Cole. But our orders are to limit Cole's contact with other people. No malls, grocery stores or indoor places where people gather including church. And above all, No contact with other children...period!! Kids are walking germ factors. Even if a child doesn't appear sick, they often carry something unbenounced to their families. So even the phrase,"Oh, he/she is not sick." doesn't cut it where Cole is concerned. Even Anna poses a risk to Cole. The doctors told us to try to limit Anna's physical contact, but don't keep her from her brother. And we know we can't lock Anna up, away from other children. So this is a risk we have to take. We just pray that Anna doesn't infect Cole with something.
    If you all are wondering what Del and I have been doing the last several days it includes going through 6 1/2 weeks worth of mail. I kid you not... there was 4 piles, each about 2 feet high. My parents had sorted the piles into a catalogs pile, a probable junk mail pile, Dave's pile and Del's pile. So that made things a bit easier to go through. We spent several hours unpacking our stuff and several more hours organizing all of Cole's medical supplies. He has 4 full drawers loaded with stuff from gloves and syringes to sterile dressings and gauze. Then there is the house projects that have been neglected for a month an a half. Our friends asked us to give them a list of things that needed to be done and they would do it while we were away, but much of the stuff requires me personally doing it. They were so kind to keep the grass mowed and the basic yard and house maintenance up. A special thank you to Robbie Beamer, who took time out of his busy schedule to mow our grass several times and come over to help out with other house projects. Also thank you to Jim and Julie Moeller, who not only kept this website up to date and running, but did much much more. Of course, thank you to our next door neighbors, Ed and Julie Riehl, who kept things organized, watched our daughter, helped our parents, cooked cleaned, you name it they did it. Thank you guys. And we cannot possible thank our family enough. Our parents who had the very difficult task of watching Anna. I am sure after a week or so a grandparents responsibility changes dramatically. Of course it is going to take a looooong while to deprogram Anna after 6 1/2 weeks of grandparents rules. We also want to thank my Aunt Karla, who went above and beyond the call of Aunt. She, a rookie, a person who has never had children, watched Anna, alone, for 10 straight days. She fed, she entertained, she bathed and comforted our daughter during those first nerving days after transplant. I know she desperately wanted to be with us in Cinci, but chose to stay where she was needed most. Thank you Karla. You are a very very special person.
    Del's back is doing good. She is still a little stiff, but that to is getting better. I am still trying to run and get in shape for this half marathon in December(13.1 miles), still reserving the right to wimp out when the time gets close. I have lost about 10 beats per minute in my aerobic condition. I still haven't gotten my strength back. I hit the weights seriously today and have lost about 1/3 strength. The doctors said it would be December until I was back to 100%. I beginning to believe them.
    And last, but certainly not least... Cole is doing fantastic. His labs drawn on Monday showed his AST and ALT are both normal and his GGT is now down to 136. GGT still has a long way to go but it is down from 158, so we'll take it. But the best thing is Cole is happy. I can't even describe it. It is like we brought back a new baby. We are finally meeting our little boy for the first time and we love him all the more. Praise God with every breath.

Hey guys, What A Day!!! First let me tell you that the past several days that I haven’t written an update have been very uneventful. There was really nothing to tell you all. But today is totally different. We have good news, great news, bad news and really bad news. So much that I am not even sure where to start. I guess I’ll just start with the beginning of our day. The home health nurse was supposed to come out this morning to do Cole’s regular blood draws. Well, the phone rings and it is the nurse saying she is stuck in terrible traffic and she will be late. The last time a nurse was stuck in Cincinnati traffic she was over an hour late. Remember Cole’s blood draw for the prograf level has to be nearly exactly at 8 am. If it is not the results can be off, not to mention we have to wait until the blood is drawn to give him his next dose of prograf. Prograf is Cole’s medicine that keeps him from rejecting his new liver. It is vitally important that it is given at the same time each day. So a late blood draw can not only screw up the lab results, but it throws off his whole schedule. Del had learned from the last time not to wait. She had stocked up vials and syringes so she would be able to do the draw herself. We got everything ready and suddenly realized we didn’t have enough syringes. We thought our friends, Des and Eric, who also had a liver transplant may have some, so we hesitantly called them at 7:45 in the morning. Luckily they were awake already and had some to spare. The next thing we realized was we didn’t know how much blood to draw and what tubes to put the blood in. So Del called the hospital lab and they helped her with the handling of the blood. The draw itself had a small blip. It was hard to pull back on the syringe and blood wasn’t coming out. We were a little panicked. After a quick prayer, we decided to flush the line with a small amount of saline. It worked and the line cleared. We drew about 2 cc’s of blood that potentially contained the saline and discard it. Then continued to draw the rest of the blood for the labs. It was 8:15 when we were just finishing up, sure enough the nurse shows up in time to take it over to the hospital. But the first situation of the day was under control.

We hadn’t yet started packing. We didn’t want to get our hopes up about leaving for home. The labs for the day would be the telling factor and we wouldn’t get those back until around noon, at which time Cole had an appointment with the GI, Dr. Yazigi. So we just hung out and waited. It was a little nerve racking waiting. I went down to the exercise room and ran on the treadmill while Cole napped and Del read a book. Some of my buddies have talked me into running a half marathon in December, so I have some work to do to get back into shape.

The appointment was great. Cole’s labs were a little mixed. His stool PCR test had come back positive for Adenovirus. Dr. Yazigi wanted us to stay until Monday, but……….Dr. Bucuvalas and our transplant coordinator talked to her and they agreed to LET US GO HOME!!!!! TOMORROW!!!! YAHOOOOOO!!!! They said Cole’s AST is still normal, his ALT is down again to 59 (45 is normal), but his GGT is up a little to 130. The docs said not to worry about it now, but if it remains elevated or continues to go up, Cole will need to come back for a liver biopsy. Please pray that Cole’s GGT goes down to normal. Normal is still a long way down; around 20’s I think. But we know God is capable of anything and everything. There is not much they can do with the Adenovirus. Cole is already on antiviral meds. And Cole is definitely better. Today his poop was of normal consistency. Man, who would have thought poop would be such a “hot” topic. We can’t get away from it! So unless Cole get sick or his labs worsen, we don’t need to come back until the end of October. We have a regular check up October 21. Hopefully we won’t be back before then.

Let me tell you….we were sooooo excited to get the OK to come home. I was literally dancing in the elevator. I also was hoping there wasn’t a camera in there, cause the guys monitoring those cameras would be laughing their heads off at my inability to “bust a move.”

This is one area where I show absolutely no relation to Michael Jackson, more like Stonewall Jackson. But seriously, Del and I could not stop grinning the whole way back to RMH. I still can’t believe it…tomorrow we will be sleeping in our own bed. We will be able to play with our daughter, we will be able to eat in our own home, and walk in our own yard. Anyone who has been away for 6 ½ weeks straight , and living out of a hotel room can relate. I can only imagine how good it is going to feel.

As soon as we got back from Cole’s appointment, we started packing. We have accumulated so much stuff. It is really like packing up a small house. We have food and clothes and toys and medical supplies. I hope it all fits in the car! In the midst of our packing we get a call. It is Sam, our transplant coordinator. She says that Cole’s prograf level came back and that it is very high. It is 32.6 and they want between 10 and 18. Remember that seizures can occur if it gets above 40. When I heard this it felt like I were kicked in the chest. I thought we weren’t going to be able to go home. I thought they might admit Cole I thought a lot of bad things. But my fears were allayed when they said this is something the doctors can manage from home. THANK YOU GOD!! The number is high, but why it is that high is the big mystery. I have been the one who has drawn and given Cole his last 2 doses of prograf. Could I have made a mistake? Could I have overdosed him? Could I have given him one dose and then Del followed up with another? Could the fact that we did the blood draw this morning ourselves somehow affected the results? Could we have made a mistake by flushing with saline first to unclog the line? Could the lab have made a mistake? Could the virus in Cole still be affecting the absorption of the medicine? Could this be the true value? All of these questions raged in my head. Then a call from a friend, Robbie Cannon, actually calmed my nerves. He basically said, “Dave. God is still in control.” Man, how true is that!! Sometimes in the midst of a seeming crisis it is hard to see that. Thanks Robbie. Anyway the number is too high to ignore, so the doctors wanted us to hold off giving Cole his nighttime prograf, then have another level drawn in the morning, and follow it up immediately with another dose. We will still go back to Charlotte, but won’t get the results back until tomorrow afternoon. At that point the doctors will call us and let us know what to do next.

So with this crisis under control we continued to pack. We were nearly done and took a break to eat, give Cole a bath and do a dressing change on Cole’s central line. We were all set up. Del had removed Cole’s old dressing, she had cleaned the sight and was about to place the new sterile gauze, when Del’s knees gave out and she fell to the floor in searing pain. Her back had “gone out” She was in a huge amount of pain. But she had to wrestle herself back on her feet and finish the job. She was the one in the sterile gloves and had the gauze in her hand at the time. Thankfully, when Del fell down, she was able to keep her hands and the gauze up. They remained sterile at all times. I can relate it to a guy carrying his favorite beer, tripping to the ground, yet not spilling a drop. It truly was amazing. In great pain, Del was able to get the gauze placed and the tegaderm over the sight. At this point being sterile is not necessary, so I continued the procedure while Del crashed to the floor and laid there. I had my wife on the floor in pain, but at that point my son needed me more, so I tended to Cole. He still needed to be dressed and readied for bed. I literally was stepping over Del while she lay flat on her back. Once I got Cole settled, I got Del some aleve and a hot compress. She couldn’t move. Our plan tomorrow was for Del and Cole to fly back to Charlotte while I drove, but if she was this bad how would she get Cole around in the airport. How would she carry the bag? How would she carry Cole? How would she get Cole in his seat on the airplane? Del, lying flat on her back, got on the phone with US Air. Seeing what she needed to do to get assistance at the airport. I may be able to get a gate pass to help them get to the gate, but more likely they will have to get airport people to help them. But then the problem becomes how to physically get Cole on the plane and in the seat? Should she commandeer an flight attendant to get him settled? Remember, we need to limit Cole’s contact with people. Being immunosuppressed, Cole is very susceptible to infection. Flying has always been a concern for Cole, at least the first few months while he is very suppressed. Maybe this is God’s way of telling us not to fly with Cole.

Anyway, once again we were stressing over how to get Del and Cole home. Then we received two calls. Our neighbors, the Riehls, and my mom, both had the idea that if Del couldn’t get around tomorrow, then they should just ride home in the car with me. That thought never crossed our mind. It is amazing how God works through people. Our fears were, once again, allayed. So now the plan is that if Del can’t walk or get around very well tomorrow, then they are just going to talk a ride home with me. So what we will be praying for tonight is that God’s will for us to fly be shown through Del. Of course I don’t want my wife to be in pain, but I also know that Cole could catch something on the plane. The chance may be small, but it is still very real.

I know what you all are thinking, “What next for these guys?” Well, we are afraid to ask. But we also are confident that God will get us through this as well. We know that God is in charge of even the small stuff and we shouldn’t sweat small stuff.

As of now Del is able to get up a bit. She looks like a little old lady, walking around hunched over and shuffling. (Don’t tell her I wrote that) You guys can pray for her to feel better. You can pray for the flight and the drive home. You can pray for Cole’s GGT to drop. You can pray for Cole’s prograf to come down. But above all pray for God’s will to be carried out so that He may receive the glory. Thank you all.. See you tomorrow:)

Hey guys. Things have been going pretty well here lately. Yesterday was very uneventful, medically speaking, for Cole. Del and I had a wonderful evening though. Our friends, Sam and Joanne Sudman, came over to baby-sit for the evening while we had “date night.” It was so relaxing. We ate dinner at an Italian restaurant on the Ohio River, then went to the movies and finally sat on a bench by the river and drank some Starbucks coffee. It was a very nice and relaxing evening. We are so grateful to the Sudmans. They came over at 5pm and stayed until 10pm. This meant that they fed Cole, entertained him for 3 hours and were responsible for his nighttime meds. And they did fantastic. Thank you both so much.

Cole had two blowout diapers last night, which required outfit and sheet changes. And then to top off the night he had another one at about 7:15 am. This was 15 minutes before the nurses from the home health company were supposed to come by for Cole’s blood draw. Well, this time Cole was covered in poop and our little stinker desperately needed a bath. So Del bathed him while I handled the sheets and clothes. And sure enough right in the middle of the chaos, there is a knock on the door. It was the nurses. They were great. Because Cole had such a huge blowout, he got poop all over his broviac line. What a mess!!! This required us to do a cap change. It actually worked out well. The nurses were there to oversee the procedure and correct our mistakes. After this discharge from the hospital we decided to switch home health companies. The last company didn’t follow the hospitals protocol for dressing changes, blood draws, or cap changes. For Del and me, this was unacceptable. Infection can come from anywhere, and the hospital has reasons for these protocols. They may be on the cautious side, but with an immunosuppressed child you can never be too cautious. Anyway, we were very pleased with the new home health people.

Also today Cole had a clinic visit with Dr Yazigi. She checked Cole over and is pleased with how he is progressing. His labs are the best ever. AST is in the 30’s, and ALT is now down to 69, (24 more points to go!!) His GGT is up a bit, but she said with this virus Cole has, not to worry about the GGT. All his other labs are great. Dr. Yazigi feels pretty confident Cole has a virus that is causing his diarrhea. She said when Cole’s diarrhea started, he presented like he had a bug. The tests for C-Diff and other intestinal bacterial problems came back negative. Dr. Y said this “diarrhea bug” is going around and that this is probably what he has. The plan is to just wait and watch him. They just want to make sure he eats and drinks enough to stay hydrated. Cole will have another visit with Dr. Y on Wednesday to check his progress with this bug. He will have labs drawn again on Thursday and maybe one final GI visit and then it is……………I don’t want to even say it so I’ll spell it…….H..O.. M. .E!!!!

And now a bit of news from home, we had a very uplifting event today at the house. For the past several weeks we have had a drip under the sink. It wasn’t bad, but consistent enough to warp the shelf underneath. Everyone had given a crack at fixing it, but no one could do it. I had Del’s mom call a plumber. A plumber came out looked at the problem and said the faucet was broken and I needed a new one, he also found the garbage disposal was leaking. He told us to buy a new faucet and disposal and then give them a call back. So today they came back to install all of the new things my parents picked up for us. Apparently the faucet went in great, but the disposal required some additional piping work. The guys that were doing the work got to talking to our neighbor, Peter, who had let them in the house, about what was going on. Anyway they left and said they would bill us. A few hours later a call comes to our house and my mom, who is now at our house watching our daughter, answered. It was the owner of the plumbing company. He said he had heard about our story on the news and he was not going to charge us for the work his guys did. He said his brother had two liver transplants and that he would also pray for Cole. What a great guy. His name was Bill Hefner, and his company is Bill Hefner Plumbing. I would definitely use these guys again, not for the fact that they did the work for free, but the fact that Bill was genuinely concerned for Cole and our family. Not to mention the fact that they solved all of our plumbing problems.

We made it! We are finally back at the Ronald McDonald House; all three of us. Yahooooo!!! Cole was discharged about noon. He is feeling much better. He has only had 2 blowout diarrhea diapers today, much fewer than the dozen or so he had yesterday. And Cole’s mood is so much better. He is back to his normal, cheerful, post transplant self. He is smiling and laughing and playing. Also, Cole’s labs are still improving everyday. AST is still normal, ALT is now down to 79 and GGT is down to 112. His ALT and GGT still are above normal, but the point is they are dropping. Cole’s prograf level is a little low, but remember he has been sick. This can affect the absorption of the prograf.

The plan is to go to liver clinic Monday and again on Friday. Cole will have labs drawn Monday and Thursday, and if all goes well….I am not sure if I dare say this…..We may be able to go home this weekend!!! Home, home, to Charlotte!!!! But I think I have learned that you never know until it happens.

Today we had a very lazy, uneventful day. We needed one of those. I (Dave) did get out a little bit. I took a mom and her son to Blockbuster and to the grocery store. Des’ son, Eric, had a liver transplant two weeks after Cole. Eric is doing wonderful. But Des doesn’t have a car here and Eric, like Cole, is supposed to be quarantined. So we took turns in each store. One of us would stay in the car and play with Eric, while the other went in to do some shopping. Del was tired and stayed back at RMH with Cole.

And that about covers the update for today. We still don’t know the result of the C-Diff and the other cultures. Praise God that we are making steps at getting home and most importantly…getting a healthy baby boy.

Just when we thought things were going smoothly, Cole hits another bump. It actually started yesterday. Remember when I was telling you about getting three Huge poopy blowouts, well, it didn’t stop all day. Cole continued to poop and it eventually turned to diarrhea. By yesterday evening Cole was feeling pretty bad. The night proved to be worse. Several times during the night Cole woke up screaming, with a blowout diaper that leaked all over. The doctors were called in to look him over and they decided to run some tests to see what was going on. They ran a stool test for C-Diff, which……………………….They also ran tests for other stool bacteria. The results of these tests are still pending. Today, Cole continued to go downhill. He was having diarrhea every hour. And you can imagine how red his little bottom was. I mean it was the reddest little butt I have ever seen. Even his scrotum was red and inflamed. Cole was in so much pain. And to make matters worse, every time he had a poopy diaper it would leak out his leg or up his back, which required us to give him a quick bath. Cole must have had four different baths today. And every time he got his little bottom in the water he screamed his head off. I mean he screamed so hard he was shaking. We could tell he was shaking with pain. The doctors ordered a special prescription balm called magic butt cream. I kid you not, that is the name. The resident even showed me the prescription, and it said, “magic butt cream”. They said it really is wonderful at treating extreme cases of diaper rash. Anyway, Cole was virtually inconsolable for most of the day today. Del literally held and rocked him most of his waking moments. He was miserable. The only times he smiled were when the doctors came in. The little stinker, I think he knew they were going to send us home today, so he was putting on his best face so they would think he was ok enough to go home. Well, it didn’t really fool them. Cole will be staying at least one more day in the hospital. They aren’t giving him anything for the diarrhea. They are just keeping him hydrated with more IV fluids. Today Cole didn’t eat or drink much. I think his little tummy was hurting. At this point the doctors have several theories about the cause. First and foremost, they think he may have caught another virus; some kind of stomach bug that is going around here. They said there is not much more they can do to combat this bug. As with most viruses, they just have to run their course. Another theory is that the many antibiotics have finally caught up with his system. Antibiotics, especially all the ones Cole is one, can cause diarrhea. I am not sure if I buy this theory though. Cole has been on these antibiotics for 14 days. It seems to me it would have affected him before now. And the final theory is something a little more ominous, the C-Diff.

The great news is that, once again, Cole’s numbers continue to improve. His AST continues to be normal, ALT dropped to 91 (19 – 45 is normal) and even his GGT dropped a good 14 points. (the first significant drop since transplant) This leads them to believe that whatever Cole has is not affecting his liver. Although, whatever it is may once again fire up his immune system and cause problem in a few days. The docs are just going to watch his labs and wait.

If Cole is discharged to RMH tomorrow, the plan will be to go in to the liver clinic on Monday, then again on Friday, unless there is a problem. He will have labs drawn only every Monday and Thursday. This episode places many of Cole’s medicine tapers a little later, but this is not unexpected with a virus and rejection.

What we need prayers for: We need prayers for Cole’s bottom. Pray that his diarrhea stops, pray that Cole starts to feel better, pray that whatever is causing this resolves, and pray for a restful night for both Cole and Del. Del, unfortunately, didn’t get a very restful night. She was busy changing diapers, outfits and sheets throughout the night.

And finally a bit of fun. We had a visit from the liver team’s staff chaplain, Kevin. Kevin is a great guy and has been very friendly and supportive to us during our stay here. Well upon leaving, Kevin asked if there was anything he could do for us. Del, being a little smart, said, “Well now you ask. Where were you when we had the last explosive diaper that wiped out Cole’s outfit and the excersaucer he was sitting in?” Kevin, being the ever helpful and wise chaplain, said, “You all have my pager number.” (wink wink grin grin) Well, not 20 minutes after he left, Cole did the exact same thing. He wiped out his outfit and the brand new excersaucer. (the nurses rounded up another one while the old one wash being wash and disinfected) Being the sly folks we are, we had the nurse page Kevin and when he called the nurses station back to tell him, “There is a code Brown in room 518.” Well, it worked like a charm. The nurse came back in and said when he called back he was dying laughing. Meanwhile, Del and I continued to clean up the huge mess on the saucer and give Cole yet another bath. All of a sudden the door slid open and it was Kevin, fully dressed in a mask, gloves and sterile gown; ready for action. It was hilarious….Unfortunately, or fortunately for him by the time he got to Cole’s room we were nearly done. Code Brown was under control.

Hello all. Sorry I didn’t do an update yesterday. Things were kinda busy. Nothing medically significant with Cole, but it seemed we just didn’t have much free time. I, Dave, stayed the night both last night and the night before, so I have been a bit more tired.

As for Cole, he is doing pretty good. His numbers have been consistently coming down. His AST is still normal and his ALT is now down 109. They are getting there. Cole has not been as happy the last several days. We don’t think it has anything to do with his health, but attribute it to two new teeth. It is so nice to have normal baby problems.

As you may remember, the doctor I saw in the hall told us that they are talking about sending Cole home. Home, home. Well yesterday, she clarified her statement. She said they had talked with the transplant guys and they decided that they would only do a 14-day course of antibiotics. These would end Sunday and then we would be able to go back to RMH until we had more stable labs. This wasn’t what I was expecting at my last post. She did give us the option to go back to RMH and finish the antibiotics there. Del and I decided that it was a bigger pain to get everything set up for RMH (new pump, pole, IV stuff, and then administer the meds round the clock every few hours). We felt that we would be better just roughing it out here at the hospital for a few more days. However, today we learned another startling plan. The resident came in and said the GI, Dr Yazigi, and the transplant guys were talking again, and they decided the antibiotic course was acceptable to run a total of 14 days. Remember, we were told most recently that the antibiotic was to run 14 days from the first negative blood culture. This is very contradictory to what we have been told. So, to recap the different time frames we were told: First, Dr Bucuvalas said 7-10 days from start of antibiotic, then 7-10 days from first negative culture, then the plan is changed to be 21 days from start of antibiotic, then it is increased to be 21 days from first negative culture, then back down to 14 days from first negative culture, and finally to our newest information, 14 days from start of antibiotic. Get this…14 days from the start of the antibiotic means they are sending us back to RMH tomorrow. Wow!!!!! So you can see our roller coaster of information. Quite frankly we don’t know what to think. Part of us is very excited about getting out here, but another part is hesitant. We want to make sure that Cole’s health is priority and they make sure they get everything (meaning all bacteria, virus, rejection, etc.) At this point we haven’t spoken to the attending GI yet, but it seems everyone is preparing for us to leave tomorrow. The home health nurse came out today and is getting everything set up for us back at RMH. I just don’t want to believe it until we are stepping out the door. I know the home health company had to have been informed by our transplant coordinator, Sam. And you may remember from previous entries that we found out she is leaving to focus on her family. She has been very helpful and on top of everything, keeping us informed about everything. But honestly, she probably has an enormous amount of work to do to transition her cases to someone else. Also, I know I wouldn’t be able to focus on work if I were leaving shortly. We just haven’t seen her much and she was one of our primary sources of reliable information. So the big mystery is when are we going to be leaving the hospital and then when will we be heading back to Charlotte. I have no idea!!!!!

Yesterday and today Cole has had some problems with his Broviac. It was clogging or partially clogging. The nurse yesterday managed to get it opened, but last night it clogged several more times. What they believe is happening is that blood clots are forming on the end or in the tubing itself. Today they called in a special line nurse, who is specifically trained to deal with these types of central lines. She ordered an x-ray to check to see if the line is still in the appropriate place, a few inches above the aorta. We still haven’t got the results back on that. She did go ahead and push a solution called TPA through his line. This is a drug that breaks up clots. The nurse feels pretty confident that this will work to open up the line better. The only bad part was we had to redress the site. Which means pulling off a ton of tape. Cole screamed the entire time. And since he was so worked up from that he screamed for about an hour while the nurse re-taped him, changed the cap, and flushed the line. It was a very loud afternoon.

And for those of you Dave bashers out there, I stayed the night again last night. I had talked to the attending GI yesterday about the nighttime ritual of vitals, pumps beeping, people coming in and making a ton of noise. I told her that every time someone came in or a monitor would beep, Cole would wake and then the only thing that would settle him back down was to give him a bottle. Tuesday night he had taken about 20 ounces of milk during the night, the cause of which was people waking him during the night. The doctor, being concerned about his huge amount of intake, decided to limit the nursing care significantly during the night. She ordered no vitals after bedtime, and no monitors. The result of which means Cole sleeps better and daddy sleeps better. Cole woke once at 12:30 when a pump went off, (due to a clogged line) he took 4 ounce bottle then didn’t wake again until 7:30 when the nurse came in to draw labs. It was a fairly restful night for us. The pumps went off a couple of more times but Cole never woke; I did though. However, I must confess the bed that they brought in the room is very, very comfortable.

And for all of you still thinking I am not pulling my weight in daily childcare, I got three of the biggest poopy blowouts in history. Cole’s first outfit was wiped out about 8 am taking with it the crib sheets. The next blowout took out another outfit and the sheets placed on a play mat. And the final blowout only took out a shirt, but a particle rolled out and splattered on the floor. I was very close to calling Del in for reinforcement. All three of these occurred within about 3 hours of each other this morning. And while this was going on I was trying to feed Cole breakfast, give him his meds, which he spit up. And the nurses were trying to work on his central line. It was a very hectic morning and I am exhausted.

Hey everyone, I’m baaack. I came back to a surprise. Del and the nurses had conspired against me. They brought in a hospital bed so I would have no excuse for not staying the night with Cole. They said that my only excuse was the bed was too uncomfortable. That is not entirely true. I have several other excuses lined up as well. First, I am not as mobile and quick to jump out of bed at the first sign of trouble. Second, all those beeps and nurses coming in will keep me awake. Also the lights in the hall tend to keep me awake. These will result in me not getting a full eight hours of uninterrupted sleep. Which will make me very tired the next day and thus resulting in a much more moody Dave. So you see, in the end, I don’t care to stay the night for the sake of Del. You see how easily I can turn this around J It’s a gift….

Anyway, once again most of Cole’s numbers are coming down. His AST is in normal range. his ALT has dropped to 144 (remember normal is still around 40, so we still have a long way to go) His GGT has been hovering around 120 still; about 90 points above normal. The GGT is usually slow to come down.

Cole is still in a terrific mood. I must say even only being away from him for a few days I was really missing him and feeling a little guilty about leaving Del and Cole. They seem to have managed just fine. I think Cole’s cheeks have plumped up even more since I left; the effects of steroids. Also, Cole has been eating a lot of people food. I fed him an entire slice of meatloaf for dinner. He loved it!!!

We are going to be talking to the doctors, hopefully tomorrow, about letting us go back to the RMH. With both of us here now we feel that, with team effort, we can handle Cole’s care. This will mean dressing changes daily on his broviac, and constant administering of IV antibiotics, but we feel confident we can do it. I think it will be much more comfortable there. We will be able to all stay in the same room, and cook and eat there as well. Plus just being out of the hospital means less likelihood of Cole getting sick. The truth is there are diseases that you can’t get anywhere other than a hospital. That is sad, but true. Hopefully, the docs will let us go.

And for all of you still thinking I am a selfish rat for not staying the night, take it back. Of course I am going to stay the night with Cole….tonight and many other nights if needed. I am feeling much better, Del is tired and needs a break and I love my wife.

One final thing….thank you all for praying for me and my family while I was in PA. I know I felt God’s presence during a very difficult time. It was amazing, every time I opened my bible while at my brother’s house it had a very personal and significant meaning. I finished Colossians and had started 1 Thessolonians, and it was truly God speaking to me. Amazing how that happens.

P.S. You aren’t going to believe what just happened to me!! It is now about 10:30 and I still haven’t sent this update in yet. But I passed our GI, Dr. Yazigi, in the hall, and she said……get this….are you ready?…..They are talking about sending us home!!..Home home, not Ronald McDonald home. Del doesn’t even know this yet. I couldn’t believe it :-o . I was so nervous, excited, but not wanting to get my hopes up, I brushed her off and told her go home and we’ll talk in the morning. But can you believe it? Even the mention of that is pure joy.

September 15, 2003

Well... no biopsy today! Our prayers were answered in that respect. Though Cole's numbers did not miraculously drop to normal... so we'll have to see what God has in store for us this week. Basically, his LFTs are dropping slowly but surely, so the doctor said lets wait and see where they stand later in the week. It may be that things are just moving more slowly because of the infections. Cole finished his round of intense levels of steroids on Saturday, but he will continue on the IV antibiotics and antivirul until September 29. Cole has been in a really good mood this weekend - thank goodness since I'm alone with him while Dave was in PA.
Tonight our good friends here in Cinci, the Sudman's, brought me dinner
(again!) and stayed with Cole so I could go back to RMH to shower and change clothes. I've been in the same clothes for a few days now, and I guess people were starting to notice! When I walked into RMH, there was a dance group performing old fashioned waltz type dances. They were dressed so authentically, and it was really neat to see. RMH has people come in to perform various things to entertain the families, and/or cook for the
families there. It is just such an amazing place. And the thing is, I
KNOW these people are just as busy and consumed with their own work, their own children, and their own lives but they choose to make time to serve others. (actually, just like all of you who have served our family over the last several months) People just have such hearts for service - it makes me want to cry tears of joy. Christ tells us throughout the bible to encourage one another, to love one another, and to serve one another. I am embarassed to say that most of my life I was simply consumed with taking care of myself and my children, and work of course. How could I possibly have time to serve others? This past year has been absolutely life changing for me. You all have served our family, have prayed for us, have encouraged us, brought us meals, taken care of Anna, spent hours of your time helping with fundraisers, supporting us financially, spiritually, physically, and emotionally. I get a lump in my throat just thinking about it. In fact, sometimes I just feel so awkward that we continue to be on the receiving end of so much service and love. I can't say thank you enough.

Dave will be returning tomorrow from PA. (His grandmothers funeral was this
morning.) He sounded in good spirits today, as did the rest of his family.

And when he returns, I'm going to let Dave start taking some night shifts at the hospital with Cole so I can get a whole nights sleep at RMH. I got the nurses to bring an extra hospital bed into Cole's room today, so no more sleeping on a fold-out chair! And no more excuses about Dave's belly being too sore to sleep on the chair. I was beginning to think he was just milking this surgery thing - I mean its been a month already! Okay, okay, for those of you that think I'm being harsh, I'm just kidding. I know he's sore. Whah, whah, whah. big baby. hee hee

September 13, 2003 - 10:50pm

Hello from PA! I made it. Del called me and asked if I could do the update
again tonight. So here I am at my brothers house in Pensytucky (the country
side of PA) using his computer and telling you all the latest. Cole has once
again been in a great mood. Unfortunately his labs are not normal. His AST
is back into normal range, but his ALT continues to be high. It only
dropped about 30 points, from 260 to 233. This means we will need a true
miracle to avoid the biopsy Monday. His labs will need to drop a whopping
200 points. Considering he finished his last dose of IV steroids yesterday,
it would be a true miracle for his labs to return to normal. Please pray
that we get that miracle. I am not sure what the next course of action will
be after the biopsy. I guess it depends on what the biopsy shows.

Some of the possibilities include another round of steroids, which is has
the least side effects. These though include a ravenous appetite, weight
gain, restless sleep, and potential kidney problems. The other path may be
to include Cellcept in his regiment of meds. I still haven't done my
homework on this drug, so I don't know that much about it. And the final and
least favorite is to use OKT3. This is one medicine we want to avoid. It is
kinda like chemo. It basically resets the immune system, wipping out the
t-cells and lymph cells in the body. One kid from our support group online
said her son had to go through that and it was aweful. Almost immediately
after the IV started her son started vomiting. It lasted quite a while. And
the rest of the day he just layed in bed and literally groaned all day. The
next day he couldn't even move he was so wiped out. She was told it was like
having the worst case of flu times 100. Please pray that Cole won't have to
go through that.

Anyway, I am going to keep this update short and I wish it were sweet. But
please continue to pray hard for our little guy. He is such a good little
boy. And we love him more than anything. We just want him healthy.

Another great day for Cole. He was doing some serious baby babbling today. We were playing with a gold colored calling card. I, Dave, was joking placing words in Cole’s mouth. “I’ve got a gold card” Well, Cole was babbling right along with me. It really sounded like he was saying the same thing. I quickly called the nurse in as my witness, since Del had left to take Anna and her mom back to the airport. We were both amazed. He was so proud when we started to laugh at him. He is just a totally different baby.

Now for his medical update….Cole’s numbers got a mixed review. His AST, which was previously normal, had gone up. And his ALT dropped another 70 points. This could very well be within normal range by Monday. Although it is still not coming down as fast as the docs would like. The new doctor wants to stop doing regular liver function (LFT) labs. She said they have been taking out a lot of blood and the numbers aren’t moving significant enough to warrant these frequent blood draws. He will still get blood drawn for his prograf level, but they are only going to do LFT’s Monday morning. I personally have mixed feelings about this. First, I like to keep track of how his numbers are doing daily. So this will be a little unnerving for me. But on the other side, I won’t know until it matters. I have found myself stressing over the numbers way too much. This will be a way to help me turn it over to God. I have been way to wrapped up in things that I have absolutely no control over. So my prayer tonight will be, “God, forgive me for believing I could influence the outcome myself. I trust you will do what is best and in your perfect plan. I turn my son over to you. Cole always has been yours; he is just on loan to me.”

The doctor had said that if his numbers remain elevated and the biopsy still shows rejection then they might try either Cellcept or OKT3. I am not sure what cellcept does, but OKT3, she told me is a stronger, more specific drug. We originally thought OKT3 was only used for severe rejection, but we have since learned it is also used for rejection that is not responding to steroids. Basically, she said the steroids are a broader ranging drug, attacking more things with only moderate power. These steroids might be effecting the rejection, but not to the degree needed. OKT3 is a drug that attacks more specific things with more power. I think it specifically attacks the lymph cells. Anyway that is the extent of my knowledge at this point, but if he does go on any of these other new drugs, you had better believe we will become a lot more knowledgeable.

The resident on duty today also said that Dr. Yazigi (I have to learn how to spell her name) told her that Cole will be on the antibiotics for a period of 21 days. This is in contrast to what Dr Bucuvalas thought. Dr Bucuvalas never said specifically that Cole will only be on the antibiotics for 7-10 days, but this is was his best guess. This is the first time we had heard the course would be that long. What I don’t get is the blood cultures are still coming back negative for pseudomonas. I am sure Dr Yazigi is a great doctor, but she hasn’t quite established a trust with us yet. She definitely has a different style than Dr Bucuvalas. Maybe it is just a matter of getting used to the way she does things. We felt very confident and comfortable with Dr B. It is difficult to hear of possibly more aggressive treatment from someone we had only met Tuesday. I guess this is another instance where we follow our head and heart, question what we feel needs to be questioned, be the best advocate for Cole that we can be, but ultimately turn it over, once again, to God. Huuhhh, are you seeing a trend here? I am. It seems I need to turn this over to God more.

For those of you wondering about me. I am doing much better. I started running on the treadmill last week increase my speed and distance every day. I am amazed at how much stamina I have lost. I have lost about 10 beats per minute off my normal rhythm. So I have really been sucking wind when normally I would be just coasting. Also yesterday I started lifting some light weights with my arms only. Don’t tell our transplant coordinator though, she may really give me a lecture. But really I feel so much better afterwards. It is like my body realizes it is ok and functioning normally. I am still having a little pain when I sleep or move my middle quickly. Sometimes when I flinch I feel a very sharp burning at a specific spot on the incision. I think it may be the nerves kinda reconnecting. Also recently I have been feeling very bruised on my last ribs on both sides. This is where they hooked a rib spreader and opened my chest cavity. A week after my surgery a resident said she had the opportunity to observe my operation. She said, “ It was amazing!! They had your ribs spread like 4 inches above your chest!!” It never felt painful until now. Now I am definitely feeling bruised. My guess is that the swelling around my abs has gone down enough where I am starting to feel a little more of the acute pain. (Am I a doctor? No, but I have stayed at a hospital for the past 4 ½ weeks J)

Oh, another thing, I saw Ross, the guy who was responsible for….uhmm…shaving me for my angiogram. He asked how things were going with Cole and then said, “You have lost a lot of weight!” You know I must be skinny if another guy comments about my loss of weight.

On a final note, I’ll be flying up to PA tomorrow. My grandmother’s funeral is Monday. I’ll be back Tuesday afternoon. Del will need extra prayers. Not only will she be alone and handling the normal day to day hospital things with Cole, but she may be by herself for Cole’s possible liver biopsy Monday.

September 11, 2003

Cole is a little piggy - up to 19.7 pounds! He took 40 ounces of pediasure yesterday, plus real food. (thank you prednisone!) The nutritionist said for us to switch to whole milk which has less calories. But when we gave him the bottle of whole milk, he cried. It wasn't nearly as sweet! So we are doing a half & half mix right now, and hopefully we will tame that sweet tooth in the next few days. He is so fat looking - I LOVE IT!!! It is so much better than worrying about his skinny little arms and legs.

Cole's labs continued to decline, but still not as much as we would want or expect at this point. The doc said today that if they aren't normal by Monday, we will do another biopsy and may need to try different medications.
She mentioned Cellcept, and OKT3. Dave and I are not too sure about that, as we thought OKT3 was reserved for severe rejection. Please pray that Cole's labs will be normal by Monday.

We took Anna to the zoo today and the highlight was seeing an elephant with hair. (looked like a toupee really - very funny) My (Del's) mom stayed with Cole in the hospital last night (and tonight) so I could stay with Anna and Dave at RMH. It is so nice to be able to do the bedtime ritual with Anna -bath, book, prayer, etc. I miss that so much with her. Anna talks a lot about "when Cole is better and we are all together again..." It makes me happy and sad. Happy that she has confidance that we WILL be together again in our house in Charlotte at some point. But sad that she is having to experience this separation right now. She has become such a hugger and kisser when she sees us now. It is wonderful - she was stingy with her kisses before. I guess we are all growing and changing with this experience, this suffering. And good WILL come from this, for all of us.
It already has.

Hi all. Nothing much new to report with Cole. He is still in a great mood and eating like a champ. He really likes regular people food. He ate grilled cheese for lunch and meatloaf for dinner. Cole’s labs came down again today. Yahoo!!! The only thing is the new attending GI on service, Dr Yaziki, said that normally the labs drop much more rapidly. They usually drop by half every day. At this point Cole’s labs are dropping by only about 60 points a day. I am not sure what the doctors think about this. Dr Yaziki said they might want to do another biopsy later this week to see what is happening in the liver. The labs are only one piece of the puzzle; the biopsy is another. But then in the very next statement they said they are going to try to get us back to Ronald McDonald House at the end of the week. Del and I are a little confused at this. They said Cole would have to go to RMH on IV antibiotics, but right now all we are doing is sitting around having labs drawn every day. The thing that we are confused about is the biopsy. If Cole gets biopsied again, we would have to be admitted and be in the hospital overnight. What is the point in leaving for a day and then get readmitted? We really don’t know what is going to happen in the next couple of days. Hopefully, Cole’s labs will show a dramatic drop tomorrow, and hopefully they won’t need to do another biopsy, and hopefully we will be able to get back to RMH very soon.

On a great note, Anna got here this afternoon. Boy was she happy to see us. She gave my, Dave, a great big hug and kiss and told me how much she missed and loved me. Man…that was great to hear. All four of the Jackson’s played the rest of the evening. Even though it was on a mat on the hospital floor it was still awesome to have us all together again. I know I can’t wait to get our family back together again on a permanent basis.

Del’s mom is going to be staying the night in Cole’s room. In the morning we are going to go in and visit with Cole and then take Anna to the zoo. It should be a wonderful time.

Cole has had another great day. He continues to amaze me. He has been so happy during most of this. That is truly a blessing. We meet several milestones today. First and foremost, Cole’s labs looked better. This is the first time we had labs actually go down since being readmitted. We didn’t see yesterday evening’s labs until this afternoon. Yesterday evening his numbers had peaked. His AST was a whopping 533, normal is between 15 and 41. This had never been any where near that high even at his worst pre-transplant bloodwork. His ALT also was very high at 195, normal is about the same, 17- 63. So we where a little shocked to see those lab values get so high so quick. But this mornings labs were much better. AST dropped to 433 and ALT to 165. These are still very high, but the point is they are coming down. The doctors will be looking for these labs to continue dropping and hopefully get into the normal range. They feel that Cole has made it over the hump and will continue to do better. PRAISE GOD!!

His prograf level (the anti rejection drug) is a little low, but they said since Cole is on very high doses of steroids this should be OK. The steroids help fight the rejection, but over a long term they will damage other organs. So they will be constantly weaning him off the steroids.

His broviac site is also infected. We gave Cole a “sorta” normal bath today. We set him in a little tub on his crib and washed him real good. Cole loved it. He splashed around and laughed nearly the whole time. That is until it was time to wash his hair. Anyway, after the bath it was time to get the dressing changed on his broviac. (the broviac is the central line in his chest. It goes into his aorta and is where they draw blood and administer all the IV stuff) When we pulled off the dressing it was oozing greenish discharge. We grabbed the GI fellow who happened to be sitting at the desk and showed her. She said it looked like pseudomonas. They are already giving him the treatment for that bacterium so there is not much more they can do. They are unsure if that is the cause of the blood infection or an area where the bacteria spread. I guess at this point it doesn’t matter.

We still don’t know if Cole has a viral infection on top of the bacterial infection and the rejection. It may be a few more days until we get the results back from those tests.

Another milestone we reached today was…………………….drum roll please ………………………….. Cole got his NG tube out. YEAHHHHHH!! Cole has been so ravenous, he is taking over 30 ounces of pediasure per day. That is well over his nutritional requirement. Also he is eating like a little piglet. He still doesn’t like baby food, but he devoured Del’s turkey sandwich. Del would take little bits of turkey, and little bits of cheese, roll them together into a pee size portion and Cole would pick it up and pop it in. Let me tell you…. She couldn’t make them fast enough. He ate nearly a half of a whole sandwich; on top of all the pediasure. These steroids are turning him into an eating feind. The nutritionist said it was time to loose the tube. So out it came. YAHOOO!! They also noted Cole’s aversion to the protonix, a medicine to help with reflux. Basically it tastes nasty, so they ordered prilosec, the same thing he was on pre-transplant. We just open a capsule, sprinkle it on a bite of food and….”all Gone”. He is doing so good. Even with this little bump in Cole’s recovery, I must say God has been sooo incredible good to us. I can’t possible praise Him enough. Thank you Lord.

On a very sad note, my grandmother passed away this afternoon. She is no longer in agony in this world. She went very peacefully with my mom there. It has been very hard on my mom and her brother and sister. Please keep them in your prayers. I will be flying out Sunday for the funeral on Monday. I will be leaving Del alone, but I feel this is something I must do. Thank you all for your prayers.

The blood cultures are in and the results show that the bacteria that is invading Cole’s bloodstream is Pseudomonas (sp). So what this means is they are still going to give him Gentomycin, but they are also giving him another antibiotic that is more specific to this strain of bacteria. Also the pathologist looked at the sample from Cole’s liver biopsy. She was convinced that Cole is experiencing a mild form of rejection as well as the bacterial infection. So now we know that Cole has at least two problems going on. We should have the results of the tests for viral infection back in a few days. Hopefully this will show Cole doesn’t have a viral infection on top of all the other problems. The course of treatment for either rejection or infection is a minimum of 7 days. So we will be in the hospital for at least another week. Then it is back to RMH for at least another week, maybe more. Best case scenario that puts us home at the end of September. When I (Dave) think about it this is still ahead of when we expected to be home. I had always said I would be happy if we were home before Halloween.

Cole also had an ultrasound this afternoon. Once again it showed that the artery and vein are still in good condition and the some of the fluid pockets may be shrinking.

For the most part Cole is in good spirits. I think he is getting a little bored. The only place we play is in his room. And he is either in his crib or his exersaucer. We can’t take him out or even take him on a wagon ride because he won’t wear a mask. My mom even tried to make a silk mask out of the same material as his “comfort blanket”, which by the way is called silky. But he just rips it off. And when he does he nearly pulls out his NG tube. As for the NG tube, Cole is close to getting it taken out. He has been eating like a champ. The steroid, prednisone, makes him ravenous. He is eating about 3 times what he was taking prior to transplant. At night we are only running about 8 ounces through the pump. They said if he keeps taking 24-32 ounces a day the regular way, then in a few days we can pull the tube. That would be one less attachment for Cole. The only disadvantage to removing the tube is giving Cole his meds. Some of his meds are not very tasty so we just push them through the tube. When it is gone it may be a battle every time to get his meds down. But it will be worth it, definitely.

Anna and Del’s mom are coming up Wednesday and staying through Friday. That is a huge relief to Del. I know I have missed her a lot, but Del misses her terribly. At least this visit I will be able to interact and play with Anna. Remember three weeks ago when Anna came up, I was to sick to do anything with her. Hopefully, this will be a great visit for all of us.

I also want to thank you all for your wonderful support and continued prayers. It is so uplifting to read the guestbook and know that so many of you are keeping up with Cole and praying for him. From the bottom of my heart, thank you. We are amazingly calm during this trying situation. I know that is not due to our strength, but the strength God has given us. We truly feel His presence.

Cole had his liver biopsy this morning. He did great. They started at about 9:30 by giving him a sedative called Versed, then followed that up with a dose of Fentinyl. Remember, the Fentinyl was the drug that he was addicted to in the ICU. Remember, they were using it to keep him sedated so he wouldn’t fight the breathing tube. Remember, it didn’t work to well so they kept giving him more and more and more. Well, a similar response to the Fentinyl this time. The plan was to give him the medication, Cole would fall asleep, we would kiss him and step out of the room. (the procedure was done right in his room) Cole didn’t sleep. He just got really High!! After we left, the procedure only took about 10 minutes, they came out to get us and tell us how it went. The doctors said Cole never went to sleep, but was just doing, “Goo Goo Gaa Gaa Daaa, Maaa,” He was just babbling and pointing like he was drunk. Our little baby was high as a kite!! But the procedure went well and Cole didn’t even flinch when the needle went in. All day he showed no sign of the procedure other than taking a very long and deep nap around noon. Guess the sedative hit him a little lateJ.

We got the results back late this afternoon. The preliminary findings showed that the liver is somewhat inflamed. The cause, though, is still unknown. The resident pathologist, the GI Fellow and the GI attending were the only ones who have seen the sample. They said they saw lymph cells infiltrating some areas of the liver. It was in the liver cells and something he called the ports. (I think that is what he called them) It didn’t appear to be to widespread, but something was definitely attacking the liver. They head pathologist will look at the sample tomorrow and a portion will also be sent out to another lab. This other lab will do tests to determine if the cause of this inflammation is a virus and then they will identify the strain. However, they still think it may be rejection as well. So this leads us to potentially three different problems. First, we know Cole has some type of bacterial infection. The blood cultures showed that. Though they still haven’t been able to identify the specific strain. All they still know is it is some type of gamma negative rods. Secondary to this blood infection is the attack on the liver caused either by a viral infection or rejection. At first the doctors decided to treat the attack as a viral infection and when that was under control or proven to be not the cause to go ahead and treat for rejection. But after a gathering of the great minds here at the hospital the consensus was to treat for the potential of all three.

Our GI and transplant surgeon, Dr Bucuvalas and Dr Alonso, decided that if they just treat this as infection, and then after several days when the labs came back, if they showed that it wasn’t a virus, the rejection may get significantly worse in those days. If the rejection gets worse it will be harder to treat and then they would, “Be kicking themselves” for not treating the rejection. And vice versa, if they treat this as rejection and the labs show Cole has a virus, they would, “be kicking themselves” for not treating the infection. In short their butts would be hurting if they treated one and not the other. So they are giving Cole a boat-load of medicines; several antibiotics for the bacterial infection, several antiviral to fight a virus, and several steroids for the rejection. Let me tell you, not only do Del and I feel like we have a medical degree, but also a degree in pharmaceuticals. (I can’t believe I was even able to spell “pharmaceuticals”)

I asked the doctor about the opposing problems; the infection and the rejection. He said the bacterial infection and the rejection aren’t really opposing problems. The bacteria are usually easy to kill because they live outside the cells in our body. They are relatively easy for an antibiotic to identify and kill. The problem or balancing act comes when we are fighting a virus and the rejection. A virus, I learned, lives inside our cells. They basically take over and use the cells in our body as hosts. This is why it is hard to kill viruses. The problem for drug designers is how do you make a drug that not only identifies cells with a virus, but how do you make them kill the virus without killing the cell. Well, that is about as far as my medical knowledge goes…Whew my brain hurts now…The doctors basically told us that the antiviral and the steroids work in different ways to fight each respective problem, so when they are used together they are not being counterproductive. A problem could actually come about if they use one and not the other.

We should have result of the viral labs back in a couple of days. However, I think, I am not positive, but I think that even if the results showed a virus, they would still treat for rejection, just in case. But if the results showed no virus, they would drop the antiviral med and only treat for rejection. You think you are confused!!!! Anyway, we may just be one of the lucky few to be dealing with all three.

As for Cole’s mood, he sure doesn’t seem like he is sick. He isn’t quite as happy as he has been, but he is smiling and laughing more and more each day. That makes it a little easier to deal with all this. I thank God for Cole’s mood. It would be so much harder if he were still miserable. God is still in control of this and He has lavished us with so many blessings. I know He is with us.

Well, Cole was certainly in a better mood today. He was smiling a lot more and even laughing a little. His mood is no indication of the turmoil unfolding in his little body. This evenings labs showed a significant worsening. The doctors are still a little puzzled as to what is exactly going on. This morning Cole had another ultrasound. The results were still good. They showed a little fluid around the cut edge of the liver. The radiologist said it looked a little cloudy like it could be a bile build up, but Cole is showing no other signs of infection. So as of now there is no talk of operating to remove this bile pustule. The scan also showed a little fluid on the other side near his spleen. This is a small amount and it looked clear. During the ultrasound they also marked a spot where they will do a needle biopsy tomorrow. Basically, they used the ultrasound to select a very specific spot where a needle with a hollow core, will be plunged into the liver. This will take a core sample that will be evaluated by a pathologist to determine and grade possible rejection. They want to avoid hitting any vessels, so the mark must be very accurate. Cole did great during the half hour procedure. He even managed to smile at the tech doing the scan.

We talked to the doctor and he said it would be uncommon to have an infection and rejection going on at the exact same time, but at this point they can’t rule that out. It would certainly explain a lot though. Remember, after initial administering of the antibiotics, Cole’s lab values improved and Cole was feeling better. Now his numbers have doubled in the last 12 hours. Could the infection be somewhat under control and now that has unmasked the rejection? This is what the doctors are asking themselves. They haven’t yet identified the strain of bacteria. When they do they will give Cole more specific antibiotics that will more effectively fight the infection. So I guess there is a possibility that the infection is still causing the increase in numbers. But you would think Cole would still be feeling yucky if the infection were still raging. The problem the doctors will face if it is both infection and rejection should be obvious. In order to fight infection Cole’s immune system will need to be clobbered, lowering his resistance to destroy his new liver. But as you can see lowering his immune system does the exact opposite that will be needed to fight the bacterial infection. So Cole is stuck between a rock and a hard place. We have no idea what the doctor’s plan will be if it is both rejection and infection.

We are still holding up well. Cole being happier sure helps. Del is very tired. She is staying every night at the hospital. I am still not well enough to take a shift yet. Del is still very lonely for the comforts of Anna. That has been harder than expected. We both miss her very much and our telephone conversations go something like this: “Hi Anna, How are you?” “ Hi Daddy/Mommy. I Love you. Bye.” Then she runs away and our parents can’t get her back on the phone. Ahh,….the attention span of a 3 year old. Hopefully, someone will be able to bring her up here this weekend.

And lastly, my grandmother is still hanging in there. My mom is staying by her side, talking to her and keeping her company as best as she can. But it is very hard on her and her brother and sister. It must be hard to see your mom dying before your eyes. I am sure many of you reading this can relate. Please keep her and our family in your prayers. Please pray for Cole. Pray that the doctors are able to identify the problem and quickly fix it. And being in a children’s hospital you can’t turn around without meeting someone in need of prayer. We met a 17-year-old girl who, in the last two weeks, suddenly became very ill, and is waiting status one to get a liver. She is very very scared. The doctors say she needs to get a liver in the next two weeks. Please lift her up in prayer. Her name is Beth. Thank you for being a wonderful group of prayer warriors.

September 5, 2003 - 3pm

The blood they cultured last night is positive for gram negative rods (I'm a little sleep deprived so I think I have that right?) which is indicative of infection originating from the gut, versus elsewhere like the broviac site.
They put Cole on major antibiotics to fight it, and he is responding well to those. His fever came down, and he was feeling much better late last night.
They think it could be a bile leak or some similar problem. But the CT scan did not show a build up of fluid, nor did the ultrasound. So at this point, they don't have anything specific to go chase. And they won't just do exploratory surgery to see what things look like if he is not symptomatic. So... we just continue the antibiotics, and wait. We wait to see what his liver enzymes (LFTS) do (we want them to come down) and we watch and see how he continues to do otherwise. (no fever, feel okay, etc).
Actually, his LFTs were down a little this morning from those last night - so prayerfully we will see a continued trend in that direction. The docs said that what is actually causing the infection could potentially resolve itself, but its not likely. But we don't know when it might rear its ugly head again. Could be days, weeks, months, who knows. So basically, until we have more direction of what/where its coming from, we won't do more surgery. But remember, the docs told us before we ever even scheduled the transplant that living donor transplants typically have more "plumbing issues" and bile problems than deceased donor transplants. So this is not a huge surprise to them. Its fixable, will probably just require more surgery once we know exactly what is going on. The doctors also told us that at this stage, they actually would prefer to deal with rejection than infection. This is because they can more easily deal with rejection - infection is a little tougher. So please pray for God's miraculous resolution of this infection complication. This is big - but Our Lord is BIGGER!!! And this is His battle - not ours, so we honestly don't feel a huge weight on our shoulders. We are just praying and trusting and watching to see what He does.

Hey everyone. Well just when we thought things were behind us. This happens!! The day started out like every other day since we have been discharged. Cole was in a great and happy mood. He was playing and smiling, even laughing at his Wilbur video. We thought we would take advantage of the gorgeous weather and take Cole to the zoo. He loved it. He particularly loved the bears. Though Del and I were trying to get him to like the tigers J (being Clemson grads and all).The day was wonderful, until we started walking back to RMH from the zoo. Cole started becoming restless and crying. It was approaching naptime and we thought he was just tired and hungry. However, when we got back, Cole refused the bottle and was breathing very funny. He was very congested and had a runny nose. I chalked it up to allergies. Del put him down for his nap and he fussed a while. She went in to comfort him and he was really laboring to breath. She got him calmed down and he fell asleep. She checked in on him often. She just had a feeling something was wrong. Even asleep he continued to breath very rapidly, making funny gasping type of noises. Del decided she should call the liver clinic. Luckily it was before they had gone home for the evening. They told us to bring him in. When we got there Cole was miserable. His heart rate was 220!!! And his temperature was 102.6!!! The liver team was very concerned. There were no less than 5 nurses and doctors around Cole. The thought was that he had some type of infection. The sudden onset of his illness made them believe it was some type of blood infection. This can be caused by several different things; pneumonia, urinary infection, or worse a liver infection. They quickly administered several antibiotics and admitted him. Now Cole is back in the ICU under very close observation. They did an ultrasound to rule out some major problems like a clot in the artery or vein or fluid in the abdomen. The results showed no problems there. The next thing they are going to do is a CT scan. This will be done in the next hour. This will show more anatomical structure of the area. The ultrasound is good at showing fluid and flow, and the CT will show if the liver or surrounding area has another type of problem.
They think he might have a bile build-up on the cut edge of the liver. This build-up can sometimes burst and invade the bloodstream. What they would do is insert a drain and drain the bile, then surgically go in and clean it out better. Of course at this point they are only guessing that is the problem. But they said this is not uncommon and it is something that can be fixed. They took blood and his liver numbers are up significantly, some have even doubled. This doesn’t necessarily mean rejection. An infection can also cause the numbers to go up rapidly. However, this does not quite explain the previous slow rise of his numbers prior to all this. The doctors are thinking we may have two problems on our hands. Infection and rejection. We really don’t know much definitively at this point. They are waiting for blood cultures to come back and some other tests. We don’t know how long we will be in the hospital, and how much longer we will be up in Cinci, but my guess is we will be here several more weeksL

How are we holding up? I would say pretty good. This is disappointing to say the least, but these bumps should not be unexpected. Maybe Del and I put blinders on. Things were going so well. In fact even the doctors were shocked we were back. When they saw the name Cole Jackson on the admission sheet, they thought it must be another Cole Jackson. I guess we let our guard down a bit. We were so close to going home. Remember, there was a chance we could be going home tomorrow or Monday. That is discouraging!! But you know the worst thing about this is seeing Cole once again sick. It was as if someone pulled the rug out from under him. He was smiling and laughing one minute and crying and feeling sick the next. We thought we had our baby healthy and happy, now once again we wait. Wait for the day when we come home with our little smiley coyote. When I left the ICU an hour ago, Cole was starting to feel a little better. He managed to smile and even crack a little giggle. But when your child just doesn’t laugh, even when you make every effort, that is the hardest thing of all. You know he is not feeling good after you do your best imitation of the Taz the tazmanian devil, spinning around the room like a wild top, and all you get is a cry.

If you can still muster the strength, please pray for Cole. He has is just feeling so sick. Pray that he is happy again soon. Pray that this is a minor problem that the doctors are able to see and correct with ease. Pray that our hospital stay is quick and we are able to come home soon. Already I have noticed God’s providence at work. Can you imagine if we had already gone home? Or imagine if we were on the drive back when Cole became ill. God’s timing is perfect, even though it is not something we want, He knows what is best. His plan is perfect.

Please also pray for Del. She is handling this well, by God’s grace only. But she is having a hard time being away from Anna for so long. And if I can ask you all for one more prayer request….please pray for my family. My grandmother is dying and she may have only days left. Please pray for her soul. And pray for my mom, she is literally being torn between two crises. She needs to feel God’s physical presence and support. He is the rock she needs to lean against. Thank you all so much for continuing to lift up my family.

September 3, 2003 2pm

At our clinic appointment this morning, we learned that Cole's LFTs are still up. Specifically, the GGT is now about 163. It has been slowly climbing over the last week. Some other liver enzymes are also up a little as well. They said this could be sign of rejection, or some other problem.
We will take labs again on Friday morning, and as the doctor told us, Friday will be a "make or break" day for us. Remember, we were thinking we might actually get to go home to Charlotte on Friday. If his labs go down, then we still might get to come home. But if labs are up, then they will have to do a CT scan to see if there is any "mechanical" problem, and a liver biopsy to see if its rejection. Rejection would show up as inflammation in the biopsy. If it is rejection, Cole will be admitted and would be put on a heavy duty course of IV steroids for 5-7 days. Then we would have to hang out and wait and see what his numbers do after that.

PLEASE PRAY... that Cole's numbers miraculously go down, that he does not reject, that his portal is not clotted or narrowed. I don't know what else specifically to pray for... but God knows. So lets just ask him to fix whatever could be wrong and once again, show us His Glory! He has been so merciful to us so far. And we know and trust that his plan is perfect, whatever that may be. But He tells us to pray, and to ask for healing. So please lift Cole up in your prayers once again.

Also, Dave's grandmother in PA is dying. Her hospice nurse doesn't think she has many days left. Please pray for her and for Dave's parents who are overwhelmed with suffering at both ends of the generational spectrum. Pray for God's peace for them, and for them to just totally rest in His love.

On a good note, Cole is happier than ever. He is dancing (bouncing) to videos, smiling all the time, laughing big belly laughs, playing with toys, and EATING like crazy. He took 24 oz of Pediasure by mouth yesterday, so we only put 8 oz in his feeding pump last night. At this rate, he should have the NG feeding tube out in a few days. (they want him to drink 24 - 32 oz of pediasure each day)

August 31 -

Hi everyone! We are doing fantastic - Dave and I are somewhat dumbstruck at
how well everything is going. Our Lord has lavished his grace & mercy on
us, and its just funny how after a year of suffering, it seems now that He
keeps answering prayer after prayer. I guess I got so used to being in the
middle of the suffering, and knowing and trusting that there was a purpose
for it, but now I feel so... free.

We are settling into our responsibilities of home care for Cole. He has 8
medicines that he gets at four times during the day. Plus we have to clean
and flush the broviac daily. And we have to change the dressing on the
broviac twice a week, and change the cap once a week. (The broviac is the IV
catheter on his chest so they don?t have to keep sticking him with needles
for bloodwork). And then the home health nurse draws blood 3 times a week.
The first night we had Cole back at the Ronald McDonald House, he slept 12
hours without a peep. But I tossed & turned all night stressing over things
like whether I would remember how to keep the sterile field sterile during a
dressing change. For you nurses out there, I'm sure this is second nature
to you. I've never had clinical training, but honestly I'm feeling more
like a nurse every day. Cole is also eating 6 times during the day and then
we run the feeding pump at night. His appetite is really picking up, so
hopefully we won't have to use the NG tube & feeding pump but just a few
weeks.

Cole has been sitting in an exersaucer and watching videos, his favorite of
which is called Wilbur. He bounces up and down to the music. Cole has
NEVER attempted to dance, but Dave now thinks Cole may have a little Jackson
in him after all.

Dave is feeling a little better, but every time he eats he gets very
nauseous. After the first few bites, he turns white as a sheet and then has
to go lay down. The doctors told him its best to eat small meals throughout
the day, but that just means more episodes of feeling awful. So he is
definitely not getting the calories he needs. He is really skin & bones
right now. He has lost 16 pounds since the surgery ? is down to 145 pounds
now! The nutritionist told him to drink the Boost drinks (you know those
nasty drinks that old people who can?t eat drink). He is drinking them
because he is desperate to eat and gain weight, but it is pretty yucky.

We have been running errands (Walgreens mainly) and renting movies, just to
get outside a little each day. Cole gets so excited when we get the
stroller out. Unfortunately we have to keep a blanket over his head when we
walk out in public to get to our car. And when we get to stores, one of us
stays in the car with Cole, while the other goes inside. But at least it?s
a change of scenary and we get outside the room a little.

I hope everyone has a safe & happy labor day holiday. Thankyou always for
your unceasing prayer for our family.

Greetings from three of the Jackson four. We are no longer inpatients of Cincinnati Children’s Hospital. YAAAAHOOOO!!!!!! We are staying at the Ronald McDonald House, still in the same small room. They said they will have our transplant suite ready tomorrow at 10 am. Then we will have a separate room for Cole and a living area for us. That will be so nice. Right now we are on top of each other, trying to be quite while Cole sleeps. It is very difficult, but we will manage. Our new room number will be room 22; not sure about the phone number yet though.

We were finally discharged around 6 pm. They pulled Cole’s central line about 2 and then the only thing left was the docs wanted us to get all his meds before we went anywhere. That turned out to be a big problem. Del went to a local pharmacy early this morning. They were supposed to have had all the meds ready. Well,…there was a problem. The prograf, which is the big immunosupression med, was not approved by our insurance company. The medicine is very very expensive and they needed to get a higher authority to approve payment. Get this… the medicine costs $1,000…that is per month!!! So they just weren’t going to let us have it without a little clarification on the necessity for it. What a joke!!! They pay for a transplant, but then drag their feet on the medicine needed to keep the transplant working. Our transplant coordinator was on the phone for hours, with many different people; both on the insurance end and the pharmacy end. The doctors were not going to let us go home without the issue resolved. Finally, our tx coordinator wove her way through the red tape and got it approved. But on top of that big medicine problem, we had other issues with medicines that the pharmacy provided. One, they forgot to give us the prednisone. Apparently they had left it in the fridge and failed to put it on the bag. And second they filled one of the prescriptions incorrectly. It is a good thing our tx coordinator is on top of things. When we got our meds she literally checked each label very carefully. The whole thing is very confusing. He will be taking 9 different meds regularly, at least for the first 3 months post transplant And each medicine has its own taper, so even if all goes well the doses will be constantly changing. But the idea is, after the first year, barring any problems, Cole will only be on the prograf.

And probably the highlight of the day was meeting another family from CLASS, our online support group. Their son Eric, got his “call” last night. Des, Eric’s mom, had put a post up on the forum almost immediately after getting the call. The funny thing was, when we saw our GI this morning, we asked how Eric was doing. He had this very puzzled look on his face. “Uhhh…How do you all know about that?” he said. “We know everything” we answered. After we told him how we knew he was shocked. He said that he only knew about it an hour before we did. AHHH… the beauty of the internet…information almost instantaneous.

Anyway, we sat in the surgical waiting area with Eric’s parents David and Desiree, along with Eric’s Aunt Gina. Waiting…that’s all you can do at this point…wait and pray. I was a little anxious myself. Anxious for them, anxious to know how things were going. That made me reflect on how Del must have felt. I think I had the easy job. All I had to do was lay there and sleep. Del had to really “deal” with everything. God truly was with her. Once again, words cannot express my thanks to God above.

Anyway, Eric’s family was super nice, and also amazingly calm. Eric, is three years old, and has been on the list 13 months, waiting for his call. Thank God, it finally came. When the staff came out to update them on the procedure, Del and I excused ourselves and told them we would catch up later. Later we saw them briefly as we were about to load up the car. They marveled at Cole and took pictures. And they told us Eric was out of surgery and in the PICU. Everything went well. Now, once again, it is a waiting game. Please pray for Eric and his family. Pray that their experience be as smooth or smoother than ours. Pray for them to feel God’s physical presence. That is what gotten us this far

We had a very uneventful day today. Cole is so happy. He sat in his crib and played with toys and smiled. It is so nice to see him smile. That is something he rarely did before transplant. Also Cole is starting to warm up to the doctors and nurses. He used to scream if they even came near him, but now he manages to smile at them. He is just so happy to be feeling well. He was even taking bits of pizza. He is a new baby.

The only real medical thing that happened today was Cole’s IV was finally taken away. He still has his central line, but that will be pulled tomorrow. Cole’s numbers are still rock solid, and his prograf level was 12.7….perfect.

Well here we are the day before Cole gets discharged from the hospital. I can’t believe it, God has been soooo incredibly gracious and merciful on us. We truly feel like the God has been intensely watching over Cole and our family and I know that it has a lot to do with all of you wonderful people who are literally blanketing us with prayer. God surely has been listening. From the bottom of our hearts we thank each and every one of you who has lifted us up to our mighty God. We have been so comforted be His presence through this very difficult time. Seeing other children here going through a much rougher time has been difficult though. We have met several families who’s children are not doing as well as Cole. These kids need prayer! Hunter is 3 and has an intestinal problem. His condition is very serious and doctors are not even comfortable telling the family he is going to be alright. Yet Hunter’s mom is strong and faithful. Her faith is centered were it should be…on our precious Lord and Savior. Her faith surpasses our understanding and that in turn increases our faith. It is truly amazing how that works! Also a boy named Kip, who is having difficulties with a trac tube. Kip is very prone to pneumonia and his illness is also life threatening. His family are also believers and they too are rocks set upon the foundation of Christ. And finally another little boy who has another type of liver disease. His name is Brennan. He is 3 years old and has been waiting for a liver since January. His PELD is 27, so he is pretty sick. Several organs have become available for Brennan, but every time he has an infection or is too sick to transplant. Please pray for these children as well as for Cole. God has been so good to us sometimes it makes us feel guilty. Why has He chosen Cole’s transplant to go so flawlessly? Why not all the kids? Of course we don’t know the answer and we probably never will this side of heaven. His plan is perfect even when we don’t always understand why. We just have to take confidence in this fact. We did nothing to deserve God’s favor. I don’t know why He has given us His mercy. It is something I will never know. I pray that Cole continues to grow and thrive with his new liver. I pray that he never needs another liver again. I pray there is no other complications down the road. I don’t know it that is part of God’s plan or not. I only know that is my request to Him.

Hey everyone! Just wanted to drop a quick update today. Get this…the doctors were going to discharge Cole tomorrow. That is unbelievable! That would be just 13 days after a liver transplant. That is amazing. However, we have asked, and they have gladly agreed to keep Cole there another day longer. We have run into a small problem. Del is sick L. She thinks she got it from Anna when she came up to visit. Del has a very runny nose, sneezing, aching, and a low-grade fever. She has been keeping a mask on while she is around Cole, but the transplant team feels it is better to wait and see what happens with this illness, before sending our immunosupressed child home with her. And as for me I am of little help. I am not supposed to lift anything over 5 pounds, and Cole is a lot more than that. Plus, I am just now starting to feel better; not so sick to my stomach. It was a shocking thing to hear when we went back to the hospital this afternoon. They wanted to discharge him. We were excited and scared. Of course we want our little guy home or at least with us, but in light of the situation everyone feels that he should not come with us yet. But I confess, it was scary on another level as well. This is the point where Cole’s care becomes our responsibility. That, to me, is scary. Cole is on so many meds. Each of which has very specific instructions. They have to be given at a very specific time and in a very specific manner. The maintenance of his broviac line will be up to us eventually as well. They had a home health nurse come to the hospital to give us instruction on it’s maintanence, but he will be doing it for now. Keeping this thing clean will be very important.. I am talking about masking up when we change the dressing and keeping everything sterile. Luckily it only has to be cleaned and changed 2 times a week.

Oh, yeah….the surgery this morning went flawless. They puts the broviac in and there was no complications. This line is actually in his chest and is deep bored around his aorta. Kinda scary in itself when you think about it. It is very close to his heart.

The transplant coordinator also started going over ALL of the discharge instructions. Man….there are a lot. Del was taking a lot of notes. But you know the most shocking news of the day came from our GI doctor here in Cinci. Once we are discharged, he is the guy responsible for all of the follow-up. He said that we there is a chance, if all goes well, we may only have to stay at RMH for a week. That floored us!!! We have heard from several other doctors that they want us to stay another 3 weeks. I am not sure where this guy gets off saying this, but he was dead serious. I guess he figures we could have labs drawn in Charlotte, and if anything, and I mean anything comes up we need to get back here right away. The transplant coordinator was very skeptical when we told her what he said. She said that is way too early. But hey…if they give us the option to go home, we are gone!!!! That is one of the things we are fundraising for follow-up flights. Even if they needed us back immediately, just the smell of home would be enough. We would love to be back home, in our own beds, with our neighbors and friends, and especially have Anna with us again. That would be awesome. So who knows what is going to happen. Maybe we will be here another month, maybe another week. We will just see what happens and go with it.

Hello! First let us say Thank you, from the bottom of our hearts, Thank you. I was absolutely floored by the results from the silent auction. You guys are amazing. I can’t even begin to explain how truly blessed we are to have such a wonderful community. If anyone ever needed a reason to move to Charlotte, community should be on the top of their list. I can’t imagine a better place to live and raise our family than in this area. It is truly unreal what you guys did. Thank you. Thank you to all our wonderful friends and neighbors that helped organize and promote the event. Thank you to all the people who gathered the awesome things to be auctioned. Thank you to the businesses who generously donated the items. And a special thank you to the people who bid so very generously on things. It sounds like you all had a wonderful time, and Del and I wish we could have been there. God surely answered our prayers, by providing us with people like you all.

Today was another very good day for Cole. His liver numbers are rock solid and he is increasing his oral intake of formula. Today he took 12 ounces by bottle. This is a far cry from his daily caloric intake, but he is definitely making progress. Also….get this….Cole is actually sitting/standing in an exersaucer, eating cheerios and watching baby videos. He ate a whole bowl size box of cheerios between last night and this morning. Cole is smiling a lot. More than he ever smiled pre-transplant. He is a new baby and it is amazing. I can’t even begin to praise God as much as He deserves. Thank you God! I know He has Cole wrapped tightly in His grasp. Another obvious sign of that is that; remember when Cole’s prograf level was 48? That was extremely high. Well we found out that an error was made in his dosing. Cole received twice the amount he should have gotten. The doctors told us that with levels that high, Cole should have had seizures. Well…He didn’t.. and that surprised the doctors. If that is not God showering Cole with mercy, than I don’t know what is. It is so cool to look and find God in everything that has happened..well almost everything. I am still struggling with my…um…relief, but still we are so fortunate to be able so visibly see God’s work. Most people don’t look or can’t see and once you have seen the power and glory of our Lord it is undeniable. And absolutely amazing.

We still need prayer! Tomorrow, at 8am, Cole will undergo a procedure to place a broviac catheter in his body. This is basically a deep line IV that will allow labs to be drawn without a stick of a needle. It will make labs much more tolerable for Cole. It will be placed in his chest and will have a short line and capped end sticking out. This catheter will be placed in a way that will not allow Cole to pull it out. It will be done in the OR under general anesthesia. Please be in prayer for Cole during this time. We are also exploring another type of IV solution called a port-a-cath or medport. This was an idea presented to us by another transplant mom. We were never presented with this possibility and we will be talking to the doctors tonight about the pros and cons of both types. But as for now it looks like the broviac is what they have scheduled.

They are really talking a lot about discharging Cole on Thursday, the 28^th. That would be unbelievable. Cole will have only been in the hospital 2 weeks after a liver transplant. Again, if that is not God’s hand someone is certainly shielding their eyes. We still will have to stay at RMH for another 3 weeks, but that would put us home….I don’t have a calendar…but somewhere around the 17^th of September. That is more than a month earlier than our earliest prediction. This is truly a miracle happening before our eyes. Thank you God!!

And now for me…Well this morning the docs wanted me to undergo some tests to see what is going on with me. I had labs drawn, I had abdominal x-rays taken, and I had an ultrasound performed. The labs were clear. The ultrasound showed a mild amount of fluid buildup around the cut area of my liver, but they said this is normal and would not be the cause of my nausea. What they did find from the x-rays was a…..um…significant blockageL They want me to start taking milk of magnesia to see if that frees me up. That is what has been causing me nausea…there is no more room for food to pass through. I know it seems trivial, but I should have been “cleaned out” better beforehand. And I probably should have been put on a laxitive earlier on, but I wasn’t. I don’t want to knock any of the surgeons…they did a fantastic job with both me and Cole, but I was only the 20^th living donor they had ever done here. I know they have everything done pat on the child’s end of transplant, but I still think they may be doing some learning on the end of the donor. This is just my take on the situation. It may be that I am just being a wimp. You ladies know….men are the biggest babies when it comes to being sick. Being hurt is one thing. We seem to be able to tough it out if we twist an ankle during a soccer game. We just tape it up and are ready to play. But when it comes to internal stuff, like being sick, I confess and Del can attest, I am a big SISSY.

Anyway, today was a bit better, I had a wrestling match on the pot today and was able to obtain some relief. Although it was with significant effort and some minor pain and rippageL, I felt a little better in the end (pun intended J). I also have a funny story about the most recent enema. I told a friend and he just died laughing. I am struggling with putting it in writing though. It was funny, but I don’t know just how open I am willing to be. I sure will be glad to get all this over with and not even think about potty stuff ever ever again.

Auction Pictures Posted!!! If you had trouble seeing the pictures earlier, I have sized them smaller so that they will load faster now.

The silent auction to raise money for the Cole Jackson Liver Transplant Fund was a HUGE success. Over 100,000 dollars was raised! Stay tuned to this journal for a link to pictures from the event. They should be posted within the next 24 hours. We expect Julie Riehl to sleeping for several days due to exhaustion :) Thanks to all the volunteers and donors who made this event a GREAT event!

Channel 9 news also ran a story about the auction. We expect to have this digitally posted to the web site within 48-72 hours.

Hi everyone. Sorry I missed the update yesterday. Once again, I think I have a good excuse. I have been very sick lately. More on me later though. Cole is the important one here. He is doing FANTASTIC!!! PRAISE GOD!!!. His liver numbers are all near perfect. He is actually sitting up in his crib, playing, and cooing, and laughing and smiling. It is amazing. He still isn’t eating much by the bottle, but the docs said this is not uncommon, and it may be that when we get out of here, Cole will still be on a feeding tube. We will just have to wait and see.

The only real concern now is dialing in the proper prograf dose. Prograf is the immunosupression medicine Cole will be on the rest of his life. It is responsible for keeping Cole’s body from rejecting my/his liver. The key is to get the dose as low as possible without any signs of rejection. The doctors target number is 10-12. 10 – 12 what, I am not sure what the numbers signify. But they are basically the amount of medicine in is body. Cole’s prograf level yesterday morning was extremely high, around 48. Over time this level is toxic to the body. So the doctors ordered a hold on the next two doses. They skipped yesterdays 6pm and todays 6am. They have drawn more labs and we are waiting to see the results. This roller coaster of levels is not uncommon. Kids bodies react slightly different as their health improves. So what was the proper dose immediately after surgery is not necessarily the right dose a week later. It is just a matter of watching and adjusting. But other than the prograf Cole is flying through this.

Cole is scheduled to undergo one more minor operation sometime Tuesday. They will be putting in a broviac. This is a deep line IV, that will be place near his upper chest and will allow labs to be directly drawn from the site. They will do this procedure under anesthesia in the OR. This will prevent Cole from being stuck every time he needs labs. He will be going home with this broviac. It will probably stay in until his labs are very very stable. Maybe several months, even after we get back to Charlotte. We will give more specific details on this later.

And for me…Well…let’s say my son is doing a heck of a lot better than I am. I am very nauseous. My stomach is so rumbly. I am hungry, but when I try to eat I feel sick, and when I feel sick I feel very sick. Like having a stomach virus. The difference is that I haven’t been able to …….um……relieve myself. Yesterday I was feeling so bad I met back with the surgeons and they told me that they have found this is common in over 90% of the living donors. Apparently, what they believe happens is there is a bundle of nerves that connect the liver to the stomach. Some of those nerves had to be cut away from the portion that was needed for Cole. They believe my stomach is just a little ”freaked out” and not acting normally. It is not able to empty properly. Yesterday they thought some of the problem was that I was…um…bound up. So they told me to take a laxative and see if that helped.. It didn’t….Then try a fleets enema…..That also was only moderately successful. Nothing was working and I was in PAIN. Oh, I was so miserable. This morning, once again, I woke up to the same symptoms, I felt sick and somewhat hungry. And the first bit of food, I thought I was going to barf. I managed to choke down a nutri grain bar, but I felt so sick. I again met with the surgeons in Cole’s room and they told me to basically, tough it out. They didn’t say that exactly, but they said it was going to take some time. It may take up to 3 weeks for my body to be functioning normally. 3 weeks!! I’ll probably be dead by then!!! They did say if I was feeling this bad tomorrow, they would run some more tests on me to rule out anything major, like a tear in my intestine or fluid around my stomach, but at this point they didn’t think it was anything like that. All I know is I feel like crap! I am lying in bed at RMH in agony, starving, but unable to eat. I told myself I wouldn’t grumble, but my agony kept me from doing things with Anna this weekend. Poor thing came up here to spend time with mommy and daddy and was only halfway satisfied. Mommy took her to the aquarium, she took her to the playground, she did a bunch of things with her. I was too sick to even move around much. It was awful.

But you know what keeps me going? Looking at how well Cole is doing. He is liking my liver, and my liver is liking him. That makes ANY amount of suffering worth it.

Dave and Del have sent a CD full of post-surgical pictures. We have posted them to the after-surgery gallery. Here is the link: After Surgery

We have also received a video from Dave and Del that they shot with their camcorder. We will be showing it using a video projector at the silent auction tomorrow.

Hello from all the Jackson’s. Today has been another good day. Last night, while Del and I were out to dinner, the nurse was supposed to place the NJ tube. What the doctor failed to mention prior to us leaving was that we needed to file out a form in order for them to give him a very mild sedative. The resident doctor was very thourough at explaining the sedative. He said it was an extremely mild, extremely safe medicine, that did not cause any type of breathing problems whatsoever. He even said they would give him half of the normal recommended dose. They just wanted to relax Cole before the tubing. Anyway after Del dropped me back at the RMH and she arrived at the hospital they told her she had to sign a consent form. Does that sound silly? All this medicines that they have given and are giving Cole, and this one is apparently the least harmful, and they needed consent. It seems very silly to me. One of the reasons we wanted to have it done while we were out was to relieve some stress on Del. She has seen them do so much to her little baby. Our families, with my mom, a RN, were going to play “watchdog” while the procedure was performed. Oh well! It didn’t happen that way.

After Del signed the consent form, the nurse proceeded to start. The sedation had absolutely no effect on Cole. It didn’t even calm him done on little bit! The tube has a wire on the end and they measure the PH level as the tube slides down. The ph changes when it is in the intestines. That is how they know it is in place. The nurse slid the tube down and said she was feeling resistance the whole time. Del thought she was in, then all of the sudden she yanked the tube completely out in rapid fasion. That kinda freaked Del out a bit. The nurse regrouped and tried again. BINGO! The tube was in place. Afterward she told Del she had felt more resistance once again, but then she said a somewhat startling comment. She said, “That was the first time she had placed an NJ tube in a child that was awake.” The first time!! Knowing how hard Cole is to tube we got a rookie. Del said, “I’m glad you didn’t tell me that before you started.” Well, to her credit she did it; and did a great job at it.

In other good news, Cole has really started taking a bottle now. Well, for most kids his age it is nothing, but to us it is awesome. This morning he gave himself 2 ounces and then he did the same thing this evening. It is small, but it is a terrific start. And we are very very happy.

But the best news of the day was that Cole is no longer a resident of the PICU. YAHOOOO!!!! He has been transferred to the 5^th floor step down unit. This area still has the capabilities of the ICU, but it is so less stressful. The room is much bigger, the area is much quieter, and we can have as many in the room as we like. In the PICU, we were limited to only 3, so we kept rotating throughout the day. We are so very very thankful to our wonderful and merciful God. He has been unbelievably good to us. We feel like the luckiest family in the world. I am not sure if I want to put this in writing, but I’ll go ahead and do it anyway. Cole is doing so well, his liver numbers are rock solid, his breathing is no longer an issue, they did the last dose of methodone today, so his detoxification is finished, he is starting to take small amounts of formula; Dare I say it……. Dare…. If Cole continues to do this well, there is a chance that he could be out of the hospital sometime late next week. That would be a gift handed directly from God!!! We are also well aware that at anytime Cole could run into a complication. We will never, never, be out of the woods completely. I don’t want to sound like I am doubting God; I know He certainly can keep us on the path to going home, or He could even speed up Cole’s recovery. I just don’t know what His plan is. That is why I still make hesitant statements like the one above. We are fully aware that our lives and Cole’s life, is totally in His control, and we turn our fate, and our son’s fate over to Him.

Wouldn’t that be wonderful though? That would still mean we would have to stay at RMH for several additional weeks, but it would put us ahead of any time we had ever expected to be home. I am getting goosebumps just thinking about it!!!

In other news, Anna flew up here today. Her Pappa Roo, Del’s dad, brought her. He said that the highlight of their trip was using the airplanes bathroom. I bet that was too funny, for both of them. I could just hear Anna now, “Pappa Roo! I pee pee’d on an airplane, Hey everybody, I pee pee’d on an airplane.” That is just too funny.

Anna will be staying here at the RMH with us. She and Del will share a bed so I don’t get accidentally bumped. Tomorrow we have plans to take her to the aquarium and a museum. While we are staying here at RMH they offer free passes to many different places, so we plan on taking her around and having some fun. Unfortunately, I don’t know if I’ll be able to keep up and go to both places. I’ll just play it by ear. I felt pretty bad today. Yesterday I definitely overdid it; Big Time! I was paying the price today. My back has been hurting a lot more lately. It seems to be that because my belly is so stiff and sore, I am walking very hunched over. Well my back is starting to feel the strain, and it is very uncomfortable. I wish I could get a back rub, but lying on my belly is NOT and option now. I’ll suck it up though and be a man. No more grumbling.

Thanks again for the continued prayers. You all can pray specifically for Cole to start eating well and pray that we get out of the hospital soon. Thank you all so very much. We love all of you.

Hello, Everyone. Once again, I, Dave, get the official update duties. I guess I’ll start off with this morning. Somehow the order for Cole’s chest x-ray last night got messed up so they ended up doing it this morning. It still showed the same small collapse in his right upper lung. They said that it should re-inflate on it’s own, once Cole starts taking deeper breaths. Coughing and crying also help expand the lungs. Cole has just started doing both recently, so we should see progress on the lung soon. The doctors are not worried at this point.

Also, Cole’s liver numbers continue to “kick major butt.” They seem to be rock solid. That is soooo good. Man, God is awesome. The only thing now I think is the feeding issue. Cole did not throw up at all today, but a decision has been made to place an NJ tube in him. This is different from an NG tube. An NJ tube goes farther down his digestive tract. The tube actually goes through Cole’s nose, past his stomach and sits in his small intestines. The thought behind placing this tube over an NG is that by bypassing the stomach, it may give Cole’s stomach a better chance to settle down. With Cole’s current history of vomiting they just want to give it a bit longer. Cole will be fed through the night with the NJ tube. This is very similar to what we were doing at home, pre-transplant.

Cole did take a little bit of formula the regular way today. Thank you God!! It was only a very small amount, 20cc’s, which is about 2/3rds of an ounce, but it is a start. Even I don’t feel like eating much at one sitting. The doctors told me that I’ll feel full with about ¼ of the portion I used to eat. Therefore I should eat less, more frequently. Anyway, Cole had a very good, uneventful and laidback day today. That is just the kind of day we like.

As for Del and me, we did another TV interview. This one was with a local CBS station here in Cinci. Apparently, the anchor occasionally does searches for Cinci in the news in other parts of the country. He found the story that WBTV did and wanted to do there own piece. It went OK. The media relations’ person called us this morning, out of the blue and asked us if we wanted to do it. Of course we said yes. Anything to help promote organ donation and preach the power of prayer and Faith. The only thing was I was so drugged up that my head was very foggy. I had taken only one of the recommended 2 pain pills, and even that was nearly 3 hours prior to the interview. But I’ll tell you…I was loopy. Luckily, Del came with me and saved the day. She so eloquently stated what I was babbling to get across. I am surprised there wasn’t drool running down my face. They also interviewed one of the Research docs here at Cinci. Dr Jorge Bezeera. He was fantastic. He explained everything very clearly, and concisely about the disease and about transplantation in general. The media was not allowed to ask anything particularly related to our case. Afterward, Dr. Bezeera took us back to his lab where he showed us his research facility and all the ground-breaking work being done on biliary atresia. It was awesome to see. This hospital is one of the leading research institutes studying this disease and I think they are on the verge of something “HUGE”. Which is great for other kids who have or who will get BA, but as for us we are no longer dealing with BA. We are now dealing with organ transplantation problems. So maybe our suffering with this disease will help the docs stop this terrible disease and help save other babies. That is an incredible feeling.

As for me, I definitely pushed myself hard today. I got up, got ready, and walked one block from the RMH to the hospital. I walked A LOT today, Dr Bezeera, for a small statured man, walks very fast. And being the stud that I am was not going to tell anyone to slow down for me. I am paying for that now!!! OOOOH I am stiff!!!

On another good note, Del and I actually got away this evening. Just the two of us. We went to a very quaint restaurant and had a terrific meal. I had some real red meat!! Yahoo!! Although I was trying to shovel more in thank would fit, I ate wayyyy to much. And the dinner conversation was….well…pretty much non-existent. I had just taken two percoset pain pills. I was a virtual zombie, but I had to take them in order to keep myself upright and in comfort. But it was a trade off. I literally just felt like someone had covered me with a veil. When I am on those things I can’t see well, I can’t hear well, I am very fuzzy, I can’t even think or speak well. Hopefully, the pain will subside enough soon that I won’t have to take them much longer.

And finally tonight I wanted to take some time to thank the wonderful doctors and nurses that helped me personally while I was in the hospital. Amy; who was always there to join in on the Dave bashing, also a nurse who does a fine catheter pullJ, Allisa; who was always there at night with the drugsJ, Krishna; who like to tell me to slow my butt down, not to forget Cara, Connie, Dana, Claire, Laurie, Kelly and who could forget Ellen who is the master of the milk and molasses enema. And please forgive me if I missed anyone, but remember…I was on a lot morphine most of the time. And the doctors, most of which I don’t even remember there names, I do remember you made everything as painless and pleasant as possible. But sincerely, you guys were the best. I know I was just a big ugly adult you had to take care of, but I would be honored to have any one of you take care of my son. And I am sure some of you will when he gets out of ICU. As far as specific prayer request. Please pray for the insertion of the NJ tube. You all know our history with tubes!! And pray for safe travels for our daughter and father in law as the fly up to stay with us the weekend. We are praying Anna has a good time here and is on her best behavior. It will be great to all be together even if it is for a short time and under difficult circumstances.

OK, OK!!! I am a few days behind on the updates. I have some good excuses. I actually typed up an update late last night and finished it around midnight or so. But like the night before I was HEAVILY drugged up. By the time I hit send to send it to our neighbors who have been posting, my time online had run out and it logged me off. I hadn’t saved the e-mail and to make a long story short an hours worth of hard typed entries was gone and irretrievable to a person in my state of alertness. Sorry

So much has happened I don’t know where to begin. So I guess I’ll start with some of the earliest happenings. Beginning on the 18th or so, Cole has been being weaned from many of the meds he was on. They have slowly lowered his fentanyl, which is a strong and highly addictive sedative that was given to him to keep him comfy with the breathing tube. As they lowered his fentanyl, they were also lowering the settings on his respirator. The plan was to get him thi the fentanyl completely and then turn off the respirator and let Cole breath on his own. The problem was Cole was becoming very agitated every time they reduced his fentanyl below 5. So they would bring it back up and try again. They began to think that Cole was already becoming somewhat addicted to the powerful med. They decided the best option for Cole would be to cut him off cold turkey, rather than continue weaning him off. Del put in the Baby Einstein video to distract him and he actually did fairly well when they stopped it. The breathing tube came out shortly thereafter. After nearly 5 days with a machine helping him breath, Cole was finally doing it on his own on August 20. Thank you God!!!

That started a landslide of other tubes coming out of him. They pulled his NG tube, which was in there suctioning “goo” and stuff from his stomach. They pulled out his foley catheter. A welcome relief I can attest to personally. (And even for a baby I was very proud of the size and length of Cole’s catheterJ) The day was starting out great. It would soon begin to change.

With all of these tubes out, the doctors wanted Cole to start trying to take a bottle. It had been such a stressful morning for Cole, that the decision was made to start feeds later in the afternoon. I, Dave, unfortunately wasn’t there to help Del get through the trauma and joy of all of Cole’s “piping” coming off. It must have been a lot of things; happy and stressful. Cole was losing his “cyborg-like” apparatus, but he wasn’t happy being messed with. When I got word of all that had happened, Susan, Del’s mom had called me and said “Come up here and see this” What I saw as I walked through the door was a site I’ll never forget. Del was holding Cole in her lap with a grin from ear to ear. The picture perfect scene that was lost the other day had finally happened and both mommy and baby were content in each others arms. I saw Cole was content, he hadn’t smiled since the operation, but he looked comfortable and content.

When Del had finally laid him down everything was fine. That is until he threw up. It was green and very mucousy. They staff didn’t think it was anything to be concerned about. They got him and his sheets cleaned and carried on the normal day. Later, Del was about to give Cole his first try at the bottle since his transplant. She put the bottle close to him, he pushed it away, turned his head and threw up again. And this time it was a lot. This lead the doctors to think that his stomach was full of gunky fluids, so the plan ws to reinsert the NG tube to, once again suction off the excretions. This is the same tube that had been taken out hours earlier. It seemed like a small step back, but a necessary one.

Well, you all know our experience with tubing Cole. HE IS HARD! Well, he proved hard even for the experts here. The PICU nurse tried and it went into Cole’s lung, Cole began to turn blue; very blue. Del screamed, “He’s turning blue!” The nurse abruptly said, “No it is not!” and continued to go about her business of rewrapping his O2 monitor that fell off his finger. Del walked away crying. She collapsed in the chair next to me and we began to pray. And we prayed vigorously. My mom, who is an RN, said, “I want you to check placement, NOW!” Sure enough when she did it confirmed it was in the lung. Looking back at the situation, we don’t fault the nurse. Cole is a hard tube, and anyone, even the best can get it in the wrong place. But what we didn’t like was the fact that she was abrupt and it seemed that she wasn’t hearing our concerns about our son turning blue. Well, we tried to let this slide and after everything calmed down a bit, I hurried downstairs to make some calls for emergency prayer. She was about to try to insert the NG tube again.

Once again the tube did not hit the mark and that was the last time we were going to let her try. The staff regrouped and decided at that time to give Cole another chance. The next time he threw up they would try again. Cole is still getting his nourishment through his IV. It is a solution called TPN. TPN, when used over a long time can cause other problems in the body, so even though it is not immediate, they need to get him eating using his normal GI system. This is either oral feeds or through a tube. Whatever the option the food will travel it’s normal route through the bowels, and help get them “started.”

So after that bit of excitement we awoke today, August 20, a little frazzled, but still hopeful. Even though the tube seemed to be a setback, things were generally moving in the right direction. His liver numbers are still awesome!!! The last ultrasound, once again showed great flow of blood and no clotting. They are going to discontinue regular ultrasounds unless needed. However, we awoke to more problems. First and least important is they believe he is having withdrawal symptoms from his fentanyl. They have started him on methadone to help with his increased agitation, clamminess and generally restlessness – basic “detox”.

The next problem is that a small section of his upper right lung had collapsed. It is currently unclear whether it is due to the tube being inserted in there or possible Cole being too “dry” and him lying on his side. The combination of the two can lead to small portions of lung “sticking” together. Since he has only been breathing on his own a short time he may not have the strength to expand his lungs completely. Either way it happened there is not much they are going to do about it at this point, but watch and monitor.

The most discouraging bit of news of the day has caused a huge stir around the PICU. Somehow orders got screwed up and they neglected to give him his prograf. Prograf is Cole’s anti rejection medicine, also known as his immunosuppression med. This could have been a MAJOR problem. Missing doses can cause his body to reject my liver. This would mean disaster. Fortunately his numbers are not indicating rejection at this point. At this point in his Prograf journey, the docs are trying different doses and trying to dial in the least amount of prograf they can give without rejection. It is a balancing act, where any tip can send him tumbling. The biggest problem is the failure in “the system” How did this happen? Who is to blame? But most importantly what can be done to keep it from happening again. The transplant surgeons were unbelievably angry. There was apparently yelling and swearing at the failure of the checks and balances they thought were in place. They as well as the GI docs have been speechless, and although not coming out and saying so, they seem to be very sorry this happened.

However what this has done for Del and all of us is commit us to harping over every medicine, procedure and other thing that is done to our son. We have asked for, and have been given a list of his current meds and times that they are to be given. We have also recently learned that the failed tubing I mentioned earlier, was never discussed with the guys heading this thing; the transplant surgeons. They basically came out and told us that the decision to retube was made without conversing with the transplant surgeon.. So you see all this has lead us to be a little leery of how decisions get made, and acted upon regarding Cole’s care. We still feel confident in the top level doctors and the lower level nurses. It seems middle management needs to be revised somewhat. Furthermore, we place our Faith in our Lord to work things out for the better. We pray God uses our diligence and the knowledge of others to keep our path straight.

This afternoon, Cole vomited again – more dark green bile. The surgeon came by and said it could be a few different things. It could be that his bowel is just really sluggish from all the fentanyl he was on that slowed him down. Or it could be a bowel obstruction or something like that. They ordered an x-ray of his belly (hasn’t happened yet…) and they also said they may end up doing a CT scan tomorrow if he vomits again, or acts weird, or has fever, etc. She said if it is an obstruction, they could repair it with more surgery. Please pray that it is simply sluggish bowel, and that Cole’s little body will quickly “wake up” and start acting like it should.

On a good note, Cole got two more things out today… they removed his last Jackson Pratt drain, which was draining fluids around his belly area. And they also removed his Art line (IV in his foot).

I am now in Cole’s room typing this update, it is about 9:30pm, my mom and dad are here with me. Del and her mom are out for dinner. We are listening to some soft music. And Cole is finally resting peacefully.

As for me….Well, you all know me. I always have some funny stuff too. I am currently an official visitor of this hospital. They discharged me this afternoon. I am still very sore and bloated. So continue to pray for healing and flatulence. But as for the flatulence….in the next day or so you might want to not pray for that anymore. I should be ok then. Can you see it? Here is the scene: months later, we are home, sleeping in our own bed, the lights are out, the kids are tucked in their own beds, we are about to drift asleep and suddenly…………rrrrrrrrrrrrriiiip!!!! Del says loudly, “DAVE!!” I calmly roll over and say, “ It wasn’t me someone must have forgotten to stop praying for me to pass gas.” You see, soon it might not be such a good thing to pray for.

I am going to be staying by myself at the RMH. At least until Cole gets out of PICU. There is only one chair that pulls out and it is very uncomfortable. This is not the place for someone who has had major abdominal surgery to lay down. So please continue to pray for Del. She will be farther away from me and may be feeling more alone. Also since I no longer have a place to go and rest I may have to leave Cole’s more frequently and for longer durations. I can’t seem to sit upright or walk for very long. It is amazing how much you use your ab muscles. So I tire and hurt very easily. This means I’ll have to get all the way back to the RMH to lay down and rest.

This is one thing I didn’t plan on; being sooo sore. I am still walking around hunched over , I am not allowed to bend, lift or do much at all for quite a while. This of course makes it difficult to take care of myself. Showering requires being on 2 percoset to make it out alive. And you know the most amazing thing? God has created such a wonderful body for babies, They say Cole is no longer in pain from the sutures or the operation itself. In fact if it weren’t for the withdrawal med, methadone, Cole wouldn’t need any pain medicince at all. His body is so quick to heal it is unbelievable.

Anyway, once again sorry for skipping some days. I’ll do better next time, sorry for writing such a long update (I’m sure many of you are tired), but thank you for continuing to care about us and most especially thank you for continuing to pray for us.

August 18 - addendum

I see in Dave's update last night, he failed to mention the special
concoction the nurses gave him, and I thought it worth noting. hee hee
After 4 days of no relief, I finally pitched a fit to the surgical resident
that Dave needed an enema that night. I refused to listen to him suffer for
another 12 hours. A short while later, the nurse walked into Dave's room
and said the resident put in an order for a milk and molasses enema. I
thought it was either a joke, or that the resident was trying to get me back
for telling her what to do for him. But the nurse assured me that this is
what they often use for kids here. So 16 oz later, Dave was a free man. I
had to bite my lip to keep from laughing at him during the process, and I
think the nurse did too. Dave did not think it was funny. P.S. Please, no
one EVER bake us any molasses cookies.

August 18, 2003 11:45pm
Hey Guys! I'm Baaack! Well sort of. Just letting you all know I am typing
this, on Del's computer, still sore, aaaand.... on three doses of
morphine!!:-) More on me larter. (i am jsut going to stop correcting my
typors, It has taken me a long time to get this part typed) Now the nurse
came in and gave my two percosets to last me at least four hours..

Cole is doing great considering all this little guy has undergone. He has
had some small setbacks tiday. Fisrt Cole's Ng tube clogged, This is in
lplace to help suction off the fluid in hius beelly. When it clogged it
stopped pulling off the gas and fluid. His belly just puffed up like a
balloon. He was miserable. They replaced his tube and he immediately perked
up and his belly started going down. But this led to him retaining a little
more fluid than expected at this point. So the bottom line is he will have
to wait another day or two to try to be extubated.

Also, Del got to hold Cole for the first time today. It wasn't the picture
perfect scenario you are imagining! Cole weas trying to scream the entire
time. He is so tubed up that I think he couldn't see his mommy, even though
she was closer than ever to him. He just turned red and you could tell he
was screaming his head off behind the tube. It was very trauamatic for Del,
as well as Cole. Del said she wants to wait a lot longer until they try that
again. It really took a lot out of her. The nurse took a picture of the
scene and Del's expression says it all.

They have been lowering many of his meds including his sedatiion, which
meeans he is awake a lot longer and therefore needs much more of mommy
cxomfort. Please continue to lift Del up in prayer, she is in need of
superhumnan strenght that olny god can provide. They are alos lowering his
prgraf (immunosupression). I guess this is because lower is always better
and he is showing no signs of rejection. And they continue to slowly lower
his vent settings.

Cole's new liver is doing so well. Cole is so shiny white. Not a spec of
jaundice in him. Nearly all of his numbers are in the normal range. Thank
you God. I feel so furtunate to know this is truly what God wanted us to do.

Cole is still watching his Baby Einstein movies. Thjey really calm him down.
Also he seems to track the people in the room more and responds to their
voices. It is truly amazing.

There is nothing hapening that is out of the ordinary or nothing out of the
doctors realm of confidence. I still place my faith in God, but God has put
some serious skill in these doctors and nurse; in fact teh entire medical
staff. I wish I could elaborate on more but aI am quickly running out of
time awake and alert. Please continue to pray for Cole.

As withe me I am doing well. Your prayers for flatulence have have workd and
i am passing gas like a champ. My belely is not nearly as tendero and they
have taken my PCA away (that is the self medicating device that gves me
doses of morphine as I feel I need it) Now I will be doing oral pain meds
rather tahn iv meds. I am alwso able to eat more solids. A cracker or two at
a time BIG MEALS HUH? But this had lead them them to taking me off most of
my other monitors.
I still have a central line in mys neck/ shoulder area which is
administering IV fluid, but I think that will be takin out sometime
tommorrow. And I am still hookd up to a O2 monitor, other than that I am
wire free. I was able to sponge bathe myself and even shave, we were getting
complaints from the kids in surrounding rooms that a hairy stinky big foot
was looming the halls, hunced over and groaning.

Plese excuse all the typos. Ia m really getting drwosy and need to sleep.
Thank you for continueing to pray for us. I'll start updating again soon.

August 17, 2003 4pm
They started weaning Cole off the vent today, but it will be tomorrow at
least before they can extabate him. He is responding well to the diuretic,
and his lung xray today showed much improvement over yesterdays. Therefore,
he is much more comfortable and is not fighting so much when he wakes. So
they are now able to reduce his fentanyl sedative so that he can start
waking up more. As I am typing this, Cole is laying in bed watching a Baby
Mozart video. He is staying calm and relaxed and doing well. His liver
enzymes continue to reduce towards normal levels, and his PT is now down to
14.7 (goal is around 12). He even pooped today, which would make his daddy
very jealous. Cole's ultrasound this morning showed good blood flow still.
Praise God!

Poor Dave is miserable. He said his pain is a 6 today (on a 10 point
scale). It was only a 3 the day after surgery, so you can imagine how
uncomfortable Dave is right now. Nothing seems to be working to get things
"flowing."

I've been reading a book a friend gave me called Praying God's Promises in
Tough Times (thank you Sara). It reminds us that as God's children, we will
absolutely experience sufferings in our life (Romans 8:17). It's not a
threat, its a promise. But God uses our sufferings to transform us, to
shape our hearts, to make us more Christ-like. But he also promises that
though we share in Christ's sufferings on this earth, one day we will share
in Christ's glory. You just have to keep the eternal perspective. We are
blessed and privileged to be chosen to suffer. does that sound weird? Yes,
it probably does. And I can only say that by God's grace does that thought
even make sense to me, and I am at total peace with it. There is no question
that over this past year, Dave and I have been clay that has been molded,
punched, and shaped by our potter, and we've learned lessons that I wouldn't
trade for anything.

August 16, 11:30am

We all slept pretty well last night! Dave is getting his JPeg (sp?) drain
out today, as well as his 2 IVs. The only thing left in him will be his
central line, the one in his neck. He was walking again this morning, and
they are finally letting him drink some water. The surgeon said he can also
eat some today if he feels up to it. His biggest pain is the gas, which he
can't seem to pass. If you aren't too embarrassed, please ask God for...
flatulance? hee hee

Cole is overall doing well. He is still fighting the vent and the sedation
is just not working real well. His lungs are "soaking wet" because of all
the swelling in him right now. The surgeon said that as soon as they can
"dry out" his lungs, he can be extabated (taken off the vent). So they have
given him some lasix (diuretic) to try to get the fluid off. Also, his PT
level (prothrombin time which is a measure of the blood's clotting time) is
too high. It is coming down, but it is still taking about 17 seconds to
clot, and it needs to come down to 12. Please pray that the lasix works,
his lungs dry out, he comes off the vent, and his PT drops. Praise God that
his liver(or is it Dave's... hmmm... interesting thought)is functioning well
otherwise, and that the blood is flowing well through the veins and arteries
with no clotting!

August 15, 2003 5:45pm
See Dave up and around .. click here!
Dave has proved me (and all the nurses here) wrong! The big stud was up
walking 24 hours after surgery. He had his brother on one side, Brian Cross
on the other, and Hines Trulock had the rear (pardon the pun). They paced
around the room. It was slow going at first, but Dave quickly got into the
swing and they ventured down the halls of the hospital.

Cole keeps doing leg lifts, and trying to roll onto his belly. He is moving
way too much so they are going to try a different type of sedation to get
him to lay still. His temp is 99 - which is great. Dave is the only one here
who hasn't seen Cole in person, and he is desperate to get upstairs to see
him. So the plan is to get Dave in a wheelchair and take him up in a little
while.

P.S. Dave got a nice sponge bath by one nurse, and then got his catheter
pulled out by another nurse. Fortunately for him, both were female! Dave is
proud to report that the catheter was about 18 inches.

August 15, 2003 1:45pm
Click Here to See After Surgery Pics of Cole and Dave
We are still doing great, though don't stop praying! Cole spiked a fever last night of 103.5 so they put him on a cooling blanket. The temp dropped to 101.5, and then this morning it was 99. The docs didn't seem all that concerned about it. Their original goal was to try to get Cole off the ventilator today, but now they are saying he's not ready. His lungs have a little fluid in them, and he is having trouble breathing. He was not cooperating with the settings of the breathing machine, so they ended up using the bag to manually breath for him to try different breathing patterns and figure out what "style" he liked. They keep sedating him to keep him from moving and thrashing about. Please pray that he will stay relaxed and calm, and work with and not against the ventilator, that the swelling will subside and his lungs so he can take deep breaths, that blood would continue to flow through his portal vein and hepatic artery with no clotting, that he would have no infection, his temp would stay normal.. well, I guess that's enough for now.

Dave is doing fine, but he is definitely not going to be walking today. He is in such great shape, that he takes very shallow breaths. Last night he was only taking 3 breaths per minute. The alarm kept going off all night.
The nurse and I kept saying "Dave, breath" just to get his respirations back up. His NG tube is out now and he is sitting up at a 45 degree angle. As soon as he can stand on his feet, they will take his catheter out. You'd think that would be incentive enough, but maybe he's scared of it being yanked out! Please pray that he would quickly get his strength back, be able to stand up, eat, etc. And that he would breath more than 3 breaths per minute so I can get some sleep tonight!

Cole is quite sedated, though he opens his eyes when I am talking to him.
In fact, my sister Sarah and I sound very much alike, and he jerked his eyes open when he heard her talking as well!

Anna is apparently doing well. I called her twice yesterday, and she said "Mom, watcha doing?" I told her Daddy & Cole had their operations and were fine. She said "Okay, goodbye, I love you." No time to chit chat when she is in the middle of playing horses. That's a good thing I guess!

Again, I feel great. Our God is a mighty God and His Hands are upon us no doubt.

August 14, 2003 6:30 pm -

We are done!!! They finished up Cole's surgery around 5:45pm and all is
well. The liver immediately "pinked up" and things look great. I asked the
surgeons on a scale of 1 - 10 (10 being complications) how the surgery went,
they said a 2!!!! I also asked them about our prayer request list, and how
everything was answered. (see the link on the home page for this list).
Everything on that list except one was directly answered by God! And the
one thing that wasn't was the first item on the list, that Dave would have
standard hepatic anatomy. They said he had 2 arteries instead of just one,
so they had to stitch them together and create one. That's why that part
took a little longer. But everything else was great.

I will be able to go in and see Cole in about another 30 minutes or so. We
still need prayer that his blood would flow tonight, and the portal vein or
hepatic artery would not clot.

Dave is doing better. he is resting (snoring actually). He had to have his
NG tube taken out and reinserted because it was looped inside his mouth. It
shouldn't have been in the mouth at all! But he was a trooper and got it
down without too much complaining. I just kept reminding him how Cole has
had to have an NG tube inserted so many times, so if Cole could do it then
so could Dave.

I feel SO HAPPY!! God is sovereign over everything that has happened here
today and HE deserves all the glory. Praise God!!!

August 14, 2003 3pm

Wow - where do I begin? So far so good. I am TOTALLY feeling your prayers.
What a powerful thing. I am feeling great, happy, and confidant. I just left Dave in recovery. He got there around 2pm and shortly thereafter started coming to. His first word (albeit very slurred) was "Cole" and his second word was "pain." He has a pain button that he has to push but it seems to take all his strength just to push it. They won't let me do it for him, because they say he must do it for himself. Dave is keeping his sense of humor even now. He muscled up some strength to hold up 3 fingers. I thought he was signing for water but then we all realized he was saying he will be up in 3 days. That is a change from his statement yesterday that he would be walking around in 2 days. I guess the pain is greater than he imagined. Then I was trying to take some digital pictures of him and they were coming out blurry. I could tell Dave was listening and thinking "Del should have read the instruction manual on the camera." I then teased him and asked him if he could look at the camera for me. With his eyes closed, he actually reached out his hand to try to grab the camera! It was funny.
Anyway, I finally soled it on my own and he half smiled when I got it figured out. So Dave is in good spirits, and so am I.

Cole is in the midst of surgery right now. The last update they gave me was that they were "working their way into his liver." I imagine by now they probably have his old liver out.

It is so weird to be writing this. It seems surreal. My son is having a liver transplant. How weird is that? I can't thank you all enough for your unceasing prayer.

August 14, 2003 12:30pm

What a morning. Cole was just taken into the OR around noon, so I haven't had a chance to get to the computers before that. Cole slept amazingly well last night, as did I in his room. He wasn't able to have any food after midnight, yet he was so calm and restful even this morning. Dave stayed at RMH last night, but came back to Cole's room in the hospital at 5:30am. We prayed, and then Dave went back for his surgery. They said he had a little trouble figuring out how to put on the hospital gown - wasn't sure which way they wanted it opened. Figures... men. Then he walked himself into the OR and hopped up onto the table. Then he asked if they minded if he prayed, and then he layed back and let God take over. They didn't get his liver completely divided until about 11:30am.. Amazingly he has not needed any blood products at this point. He is doing well. I believe he should be coming out of surgery around 1:30pm or so.

All the family hung out in Cole's room this morning until they called us downstairs. I just rocked him in the chair, and we prayed, and made each other laugh, etc. (not that the prayers were funny... different
conversations!) Then we went downstairs and I walked Cole up to the OR and they let me hold him while they put him to sleep. He fell asleep in about 1 minute.

I feel very... hmmm... strong? assured? I guess just confidant in my Lord.
This is out of my hands and that in and of itself is a burden lifted. So now we wait for Dave to go to recovery, and for Cole's surgery to begin. I will send another update later on.

August 13, 2003 -
Today was tougher on Cole. He is such a hard stick and he needed to get an
IV started, as well as have tons of blood drawn for lab tests. It doesn't
help that he screams like crazy even when they just listen to his heart with
a stethoscope. He is just so nurse averse. Mark my words, he will NEVER
date or marry a nurse. I'd bet my life on it. Well, maybe not my life, but
I'd bet Dave's left toe on it.

Well, the nurses tried starting the IV in Cole's right foot, but the vein
blew. But from that spot, they were able to get 10 ccs of blood for all the
tests, but then it clotted so none of it was usable. So then they tried to
get it in his left foot. It was difficult because again the needle pierced
through the vein. But, it was salvagable as an IV. We drew more blood off
that stick for the tests and thought we were good to go. Then the lab
called and said that one of the tests clotted, so we needed to stick him
again. They brought in their best nurse practitioner to do it, but his arm
veins kept rolling and she couldn't get it in. So they ended up drawing it
from a vein in his head. Dave and I left the room - it was too traumatic
for us to watch. We stood in the hall praying with 2 women who came to
visit us, friends of the Sudman's here in Cincinnati. Cole was so
absolutely worn out from fighting and crying that he just flopped on me.
Everytime we tried to put him down for a nap, something else had to be done
(chest x-ray, evaluation, etc) so he didn't nap all day. He was so tired
and finally fell asleep around 9pm. He will get formula until midnight, and
then pedialyte until 4am, all via the feeding pump. Then he will probably
be one hungry, fussy baby in the morning. My parents, my sister, Dave's
parents and our pastor Harrison were all here today. We definitely have
great support. So Dave and I came back to RMH so I could take a shower, and
Dave could... well, you know, start his "cleansing" procedures.:-) My
parents are with Cole in his hospital room right now. I am on my way back
over there now.

Thank you for all your prayers, words of encouragement, letters, etc. I
feel amazingly calm right now - that is definitely a gift from God. Please
continue your prayers of intercession for our family - it is incredibly
powerful and that is making all the difference.

I'll end this journal entry tonight with our Lord's prayer. I'm finding
comfort in that right now.

Our Father, who art in heaven
Hallowed be thy name.
Thy kingdom come, thy will be done.
On earth as it is in heaven.
Give us this day our daily bread, and forgive us our trespasses as we
forgive those who trespass against us.
Lead us not into temptation, but deliver us from evil.
For thine is the kingdom, and the power, and the glory forever.
Amen

Let's Roll!

August 12, 2003
Well, we made it to Cinci and we are sitting in our room at the Ronald
McDonald House (RMH). Fortunately, I brought my work laptop with me because
the public computers here at RMH are not usuable right now. We made it to
the airport today with only one slight glitch - Mr. "Don't worry about the
little things so much Del" forgot to pack the stroller! Considering we had
to carry 2 suitcases, a purse, a diaper bag, a big carseat, and a baby - we
panicked! We called Eric & Meredith Klaff who raced back to our house,
grabbed the stroller, and made it to the airport just in time to pass it off
to us before we had to board the plane. Telling Anna goodbye was pretty
tough on all of us. She was really sad and kept saying she wanted to go
with us. I had a special toy saved at home for her for Christmas, but
decided to tell her about it right then. When she found out she had the
horse "Spirit" waiting on her at home, she smiled and it helped us get
through the goodbye. Plus it gave her something to look forward to when she
got home. I spoke to her on the phone twice tonight, and she misses us
already. Please pray that she would find joy this week.

We got to RMH about 4:45, got settled in, and ordered pizza. Then Dave
found the weight room and decided to get one last workout in before the
surgery. I am typing in the dark because Cole is trying to sleep in the
crib next to me. He is a little restless, probably because he does not have
his feeding pump tonight, and because he is in a strange crib, etc.

Tomorrow morning we will go to the drugstore to buy Dave's enema! Ha! That
should be fun. Then we will head to the hospital so Cole and Dave can start
their preparations for surgery. All in all it was a pretty good day.