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.