August 11, 2003

Well, this may be the last update I write for a while. I want everyone to know how much you all mean to us. Your prayers and support, and the grace of God have kept us going. Writing in this journal has been a great release for me. It has allowed me the opportunity to not only inform you guys of what is going on in our lives, but has been a way for me, Dave, to express emotions that I normally don't express often. I don't want this to sound like a eulogy of some kind, but it really has been wonderful reading all of the uplifting comments on our guestbook. I feel like you all are our friends, even those of you we have never met. Soooo many people are praying for us and soooo many of those people we don't even know. That is a testimony to the wonderful compassion God has implanted in people. I can't even begin to thank you all enough for everything you have done for us.                                    
    People often ask us, " How are you guys holding up?" I always tell people we are doing fine, "We're hanging in there" is one of my favorite lines. The fact is we have good days and bad. But surprisingly, emotionally we have many many more good days than bad. I have absolutely no doubt it is by God's supernatural power. Most people are surprised when they see us smiling or laughing, and are in disbelief at the fact that we seem to be handling this so well. I'll tell you again, that it is by God's strength that we are holding on so well. I often pray that others see the way we are dealing with this and know that it is not of our own doing. We are totally trusting our lives and our children's lives to God. Of course we know that this doesn't necessarily mean that things will turn out the way we want them to. God is sovereign.. He knows what is best. Even in the midst of suffering we are made more Christ-like. In our bible study we were doing a study on suffering and one verse that really hit home was in Romans 5:3-5, "...we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God poured out his love into our hearts by the Holy Spirit, whom he has given us." What an awesome verse. Perseverance, character and character hope. Now think about hope... What do we hope in?.... Really... What do we hope in??? Christ! Now substitute the word Christ for the word hope....Cool, Huh? 
    One of the most recent questions I have been asked is, "Are you ready?" Well, I guess I'm as ready as I am going to be. I would say that the strongest emotion I am having is anxiety. I am very anxious to get this started. I would be lying if I told you I wasn't a little scared. I am. I am scared for the unknown. Will I run into any complications? Will my liver be the right one for Cole? Will my brother need to step up and donate if Cole has a problem with my liver? Will Cole have any complications? Will Del be OK? And the ultimate, "Will Cole survive or will he be called to heaven?" I can't even begin to tell you all of the scenarios that have played out in my head.
    But, at nearly the same time I am feeling scared about this operation, I am feeling excited. Excited to know that this could be the miracle we have been praying for. Excited at the thought that Cole will grow and "blossom", and be just like a normal boy. Excited at the thought of Cole eating and growing and being happy. And particularly excited at the thoughts of how God will use this for His purpose and glory. How this will touch the lives of so many.                                   
    The overwhelming flood of emotions is unbelievable!!! I know that I will be scared when they lay me out on the table to put me under. I pray that I pray... God, please watch over my son. I pray that my first waking words are, "How's Cole?" I pray that the doctors and nurses and entire staff sees and knows who is truly in control. I pray that my family, friends and neighbors who do not now the love and grace of Jesus, come to Him. I pray that those who do believe are strengthened by whatever happens. I pray that we all feel the very real presence of God.
    I hope to be writing to you all very soon with good news. Good news that says Cole is doing so well that we are coming home early, Good news that the match between Cole and myself was a match made perfect by God's mercy, and good news that Cole is doing absolutely, and miraculously fantastic. Thank you all for continuing to pray for us in this very trying time. We love you all very.., very,... much.

                                Trusting in Christ,    Dave
   

August 10, 2003 What? How did that happen? I left the last update unfinished. Guess you thought I had very little to say. Well, far from true. There is so much to say that I need a real long time to say it.
    Cole is doing better. He is looking so healthy and is even somewhat happy. So happy in fact on Friday, August 8th, the entire Jackson four went to Paramount's Carowinds compliments of a good friend, Eric Klaff. Eric works there and was able to get us tickets and food vouchers. Thank you so much Eric - we had a great time. It was nice to get away and spend some QT with the kids. It seems we have done so little of that lately. Both kids had a blast. Anna in particular. She loved the Scooby Doo roller coaster the best. This was no little baby coaster either... It had a few zero G drops and was pretty fast. Anna had this look of fear on her face the whole time. I thought she was going to freak out after it stopped, but instead she said," Daddy, I was so scared!! That was so fast!! Can we do it again?" Mommy took her the second time. We only stayed in the park a few hours. Cole doesn't nap at all in his stroller and he was starting to get a little fussy. But those few hours will be remembered as a golden moment.
    Also Friday we did a Public Service Announcement courtesy of John Hendrick and NBC 6. The announcement was a plug for the upcoming silent auction.  John Hendrick has been a very big supporter of Cole and our family. He held Cole in his lap and talked about the auction and all of the wonderful stuff that will be auctioned off. It will be aired at various times starting Wednesday August 13 and will run about 30 times including a special spot during the Today show. Mr. Hendrick has also helped in many other ways. But I'll tell you that the coolest thing about Mr. Hendrick is that he told us he has been praying for Cole since the golf tournament in June. He said he leads a bible study and they have been praying for all of us. Man! How awesome is that? A man with his standing leads a bible study. I think it is just so cool to see praying Christians in high places. That actually encourages me even more.
    To wrap up our Friday we were treated to dinner at the Olive Garden courtesy of the management and staff. What happened was someone went in to see about getting some gift certificates for the auction and they said they wanted to do more. So the manager called me and invited us and 10 other friends to join them for dinner. We had about 14 people there. It was so awesome to have that time of fellowship and fun with many of the key volunteers in the fundraising effort. It was a great way to say a small thank you for the hard effort and service that they have provided for our family.
    And that was probably the busiest and most wonderful Friday we have had in a long time...
    Now. On to more serious matters... the upcoming surgery. The next few days will hopefully go like this... Tuesday we are flying up to Cinci. Our plane leaves Charlotte at 2:25. (A good friend is having our vehicle trucked up there. This friend bought us plane tickets and insisted on having our car trucked up to Cinci. He thought that it was to long of a drive for Cole.) Wednesday, Cole will be admitted to Cincinnati Children's Medical Center. Both Cole and myself will undergo some blood tests that day. I will also have to endure some....huh.....cleansing....:-( that evening. They told me I have to go out and get a fleet enema!!! An enema!!! The transplant coordinator laughed and said it is no big deal! She said I take these suppositories and then do the enema. She said it is something I need to get at the drugstore. Well!! I sheepishly said..."Huh I have a question?....... Will there be instructions on the box???" I thought she was going to roll off the phone laughing. But I was dead serious. This is not something I had planned to do in my life. I hadn't researched the "art of enema" at all. Needless to say I'm sure I'll survive, but the results of how I made out are not something you'll read about in a later post.:-). Anything for my son, anything for my son.
    The next morning, August 14, is the BIG day! I'll be admitted around 6 am. They will start cutting me at around 7:15 am. They will proceed to divide my liver and have it ready to be clamped off and pulled out around 10 am. At some point after 10 they will bring Cole down. They will start cutting him and have his diseased liver out shortly after. At some point they will then literally clamp the arteries and veins in my liver and remove the portion and walk it through sliding glass doors to the operating room where Cole will be. They will close me up and I should be on my way to the ICU around lunchtime, 12 or so. They will continue to work on Cole through the afternoon, and barring any complications they expect to be closing him around dinner time, 4 or 5pm. Man, I get chills just typing this up!! How amazing God has created such a wonderful human body where this is possible? How wonderful He allows us the technology to do this surgery? How blessed are we to live in an age that this is possible? Thank you, Thank you, God!!
    They tell me that I'll be in the hospital about a week, but I have other plans. I am going to be out of there in days. I am going to really push myself to get out of there. Well, I really won't be going anywhere, but that will be one less thing Del will have to worry about. So mark my words, God willing, I am going to set a record for least time spent in the hospital. But I don't want you all to worry about me.. Please focus on Cole. He will be the one in the fight of his life and the fight for his life. Cole will be in the hospital about a month or so. We have heard that the record hospital stay for a child after a liver transplant is 7 days. That is true miracle status in my book.. God only truly knows how long. If there are many complications it could be a few months. Every complication pushes the day further away. WE JUST DON'T KNOW. After being discharged from the hospital Cole and our family will stay at the Ronald McDonald House for about another month or so. Del and I will be happy to be home by Halloween and not surprised if it is as late as Thanksgiving. But we also are aware of families who have stayed much, much longer. Our lives are in God's hands, and that is just where they should be.
    What do I want you guys to do? Pray!! There are so many things to pray for; the obvious successful surgery, and quick recovery. But also for Del who will need divine help for our Lord God, and Anna who will be away from us.
    Our plan is for the day of surgery is to e-mail a friend who will post updates of the surgery. Hopefully, she will be able to post several throughout the day of the 14th. Del says that as the doctors come out to give her updates she'll try either to make some calls or e-mail to get updates put on the webpage. As the days pass we will try to update personally. Tomorrow I'll post another update and then that will probably be my last for awhile. Thank you all for continuing to support us with the fundraising events, with the meals, and with your concern and compassion. But thank you especially for continuing to lift us up.

August 7, 2003 Hello all! Cole is doing pretty good. The last several days he has been a bit fussier than usual. We think it is because we have reduced his Lactulose. The lactulose helps lower his ammonia level, but it also gives him terrible diarrhea. We were told to use it when we felt it was necessary. When Cole's ammonia level is higher he is more irritable and he has a very strange and foul odor to him.  His hands and feet are particularly smelly. Anyway, we are back to giving him the medicine regularly. We will just have to deal with the explosive diapers. And I mean EXPLOSIVE!!!
    In spite of the fussiness, Cole is taking a bottle a lot better. He is now feeding himself the bottle and taking about 3 ounces each time. To a normal family this seems to be a very small amount, but to us it is awesome

July 23 , 2003 - I guess I'll start with Cole's birthday. We celebrated Cole's birthday Saturday the 19th. We had both our parents there and our neighbors, the Riehl's. Cole did pretty good. After a brief nap that postponed the party an hour, Cole woke up in a good mood. He is so different than Anna, and in fact, I bet a lot different than most kids. Cole wasn't interested at all in his birthday cake. We tried to feed him the cake to let him know that it is something sweet and yummy, but he just pushed it away. Even after we managed to get a bite in, he just fussed. He is so averse to food now. He did like to play with the cake though. And I think he really enjoyed playing with the balloons. I remember Anna being so covered in cake that you could hardly see her face. Cole was a very easy cleanup.
    Lately things have been a lot better. The sedative seems to be helping Cole sleep much better. In fact a few nights in a row he slept from 8pm to 7am without waking. That was a direct answer to prayer! He still has had some nights of restlessness though; getting up around 4am and then again at 6. But it is definitely better than him waking every hour.
    Cole, in general, has been in a better mood. He is still very fussy compared to most 1 year olds, but now he has about 20 minutes after he wakes from his nap in which he is happy. The other 2 and a half hours he seems to be miserable again. He really clings to Del throughout the day. She just cannot put him down.  When she does he cries and cries. I can't tell whether it is normal baby type of manipulation to get mommy's attention or does he truly "need" Del to make him more comfortable. If he were a normal healthy baby, I would say, without a doubt, he is "playin'" Del. But I just cant be sure.
    Cole has been taking huge naps. I mean two 3 and a half hour naps. That is one of the signs of a failing liver. They just sleep a lot throughout the day. But Cole seems to be holding up pretty well. He still is not eating much orally. Most of his nutrition comes from the tube. We give him 3 ounces through the tube throughout the day and then continuously run the pump through the night. We have slowly increased his pump rate to 36cc per hour and he seems to be doing fine with that.
    The biggest news of the day was labs! Cole had labs drawn yesterday. Flo missed the first stick! Wayne got the next try. The result are amazing! His total bili is down to 4.7, with his direct at 2.7. I thought he was looking better (not as yellow). His PT is down to near normal at 14.8. So the increased vitamin K  is working. His AST and ALT are down to 165 and 106 respectively and his albumin is still low at 2.3. The latest ammonia results everyone feels is errant. It showed his ammonia level was 141. This is getting very high. The docs said that if it were this high, Cole would be showing other signs. The test they do for ammonia is very sensitive and can easily be incorrect. Basically they told us to keep up the Lactulose and don't worry about it.
    All these good lab numbers come when Cole is due to be rescored for his PELD. The latest labs have his score dropping from 19 to 16. What this means is that his priority on the list has dropped. When he was a 19 the doctors told us that he could be next for the same size and blood type organ. Kinda frustrating on one hand. But good on the other. His score dropping means a less likely chance that we will get a call for a cadeaveric donor, but it also means that Cole is not as sick as he was. It is a strange feeling to hear his score has dropped. Both sad and happy emotions in one number. IT DOES NOT CHANGE THE NEED FOR A LIVER TRANSPLANT! It prolongs the inevitable.
    After hearing of Cole's lower score, Del and I were both having doubts about the August 14th surgery. We asked ourselves, "Are we doing the right thing?, Have we scheduled this thing to soon?" Our neighbor even said, " God is not making this easy for you is he?" Well, we prayed about it a lot today and we came to the conclusion that God IS making this easy for us!  Remember what Dr Bucuvalas, in Cincinnati said were the two key statistical factors that determine a successful transplant? Lower PELD score and good nutritional status! God has given us both of them today. You see, it is another direct answer to prayer! God didn't throw up any road blocks for the August 14th date, and then He is going further and is making Cole the healthiest he can be. Thank you GOD!!
    Our neighbor also asked if there was a chance that he may not need a transplant and have we ever heard of anyone getting this far and then all of the sudden turn around for the better. Well we do know of one child that was near transplant and then improved. That little boy is now 7, I think, and has not needed a transplant. The main difference between this little boy and Cole is that Cole has portal hypertension and the only cure for portal hypertension is a liver transplant. Portal hypertension occurs when the liver is so scarred that blood can't pass freely through the portal vein and in essence puts a back pressure on the vein. The blood has to flow somewhere so it finds alternate routes in smaller veins. These veins are at serious risk to burst and bleed. And if that happens we could be in a heap of trouble. Cole's belly now looks like the back of your hand. The veins are literally popping out on his belly.
    So, is there a chance that Cole will not need a transplant?  I would never doubt God's ability to cure Cole without a transplant, but I would say that it would be a phenomenal miracle beyond words and medical comprehension if that is what happens. So our plan is to stay the course He has set before us. The transplant will take place August 14th with me (Dave) as donor, unless God has other plans for us. But I truly, deeply, in my heart feel that God has given us our miracle. He has made me a match for Cole, He has given us a date, He has made Cole healthier nutritionally, and He has lowered Cole's PELD. He is preparing the way for us. PRAISE GOD!

July 16 , 2003 - Yes, we have a date! Del simply wrote an e-mail and addressed it to Dr Alonso, the transplant surgeon I spoke with when I was up in Cinci. Del also copied Dr Bucuvalas, our GI in Cinci, and Jennifer and Sam, the liver coordinators. It was a very nice and well written letter addressing our concerns for waiting so long. These were the same concerns I posted about in my last entry. The only difference was Del stated things more eloquently and didn't use any !@!# :-). She can be so much calmer than me. Anyhow, a date suddenly appeared on their calendar, and it was a date in the same week they originally told us about. AMAZING! So far God hasn't thrown up any obstacles to making this happen sooner. Of course, we are still praying for a cadeaveric donor before the date. Remember that is the preference, but only God knows what is really best for this. Also there can always be circumstances that would prevent the surgery from taking place on that day. Cole or myself could be sick, or they may have another more emergent transplant. We just never will know until they have laid us on the table. OH! The date you ask? IT is August 14th. Our plan is to drive up to Cinci on the 12th and get settled. Because we know we will be there for months and it will not be a fun time; for anyone.
    It hasn't really sunk in yet! That this is it! By August 14 Cole will have a new liver and a new chance at life. Both Cole and I will be changed forever. Not to mention Del. Del will have to worry about both of her men. That is one thing I worry about a lot. Del will be handling this by herself. Well, her mom and dad will be there, but they are not the same. Please pray that she seeks and finds comfort in our precious Lord. I know she may sometimes feel like she is alone, but God will always be there with her. That is a promise, not from me, but from Him.
    Also Del, Del's mom, and Cole are flying up to Cinci today. The docs there want to see Cole again. They are taking a very small plane and are flying with Children's Flight of Hope, a group who transports sick kids for things like this. Del is going to use this time to show her mom around the hospital and let her see some of the places they may want to stay when they are there. Kinda like I did with my mom. Please pray for a safe and uneventful flight, I think they both were a little nervous.

July 11 , 2003 - The latest on Cole is that he still is vomiting nearly every day. Del and I are thinking that his stomach isn't able to hold that much. We noticed that when we gave him more than 4 ounces of anything, formula or food, he would gag and throw up. The past few days we have limited his intake to no more than 3 1/2 ounces per feeding. He is doing great at holding things down. We have been giving him a bolus (by syringe) at 10am, 1, 3, and 5pm. Cole still will not take any fluid by mouth. Thank God for the NG tube! And overnight we have lowered his pump to 30cc per hour. That has helped Cole sleep better, not superb, but better. All this is totaling about 24-28 ounces in a 24 hour time period which equates to about 70 calories per kilogram. This is still below the minimum daily sustaining intake. It seems that even with the pump, Cole cannot gain weight. His body is just not tolerating the feeds as we had hoped.
    Today I tried to push it at one meal and I gave Cole 4 ounces of formula by bolus and let him snack on some pretzels. Sure enough, up it came. So with this we are hesitant to give him more than 4 ounces. One potential possibility is that his liver and spleen are so enlarged there is  little room for his stomach. Another possibility is  varices (enlarged veins) in his belly.
    We went to see the local GI today and Cole has lost weight. This is shocking considering he is getting fed throughout the night. The only bit of advice the doctor gave us was try to increase his feeding slightly. Not enough for him to notice, but enough to boost total daily ounces up a little. The bottom line is Cole needs to gain weight!
    Today was an eventful day. Cole's tube had come out about 2 inches. It had been in for over a week and was starting to look stiff and yucky. So we called our NICU nurse friend and she said no problem, pull it out and she could put a new one back in. We did, but the reinsertion once again didn't go as smoothly as planned. After several valiant attempts, she just couldn't get it down. We were stuck. We made a few phone calls and no one could help us. Our home health nurse was out of town on another case and wouldn't be home until later in the evening. Well, it looked like Cole would have to go without his nighttime feeding. Just before we put Cole to bed, the home health nurse called and said she would be right out. Peggy came out and got it down first try. Thank you God! So we can all rest knowing that tonight Cole will get fed.
    And finally the most discouraging bit of news today was our ordeal with the transplant guys. It seems they can't find an opening in the OR schedule to do Cole's living donor transplant until September 23 at the earliest. We were originally thinking it was going to happen mid August. Remember our GI in Cinci suggested we do it in July or August, but it is the transplant guys who apparently run the show. They only do these living related donor (LRD) surgeries on Tuesdays (which is a load of !@@! in itself) and they need all three transplant surgeons there. Two surgeons start on me, one starts on Cole. When the section of liver is out of me, one goes to Cole and the last stays to close me. They claim that this is an "elective" surgery and that there are no Tuesdays when all three are available until September 23. That to me sounds like a load of @!&!. First of all, "elective surgery", how sick does Cole have to get before it is not considered elective. None of the docs apparently want to change their schedules until Cole is really, really sick. They said that there are a lot sicker kids on the list. Well, it seems to me that if we can avoid Cole getting sicker, and transplant him before he gets sicker, why not go ahead and do it! Cole is not getting any better and he is not going to get any better. He is losing weight, vomiting, and his numbers are going up. Cole is basically slowly dying. And we have to sit here and wait! Our GI in Cinci told us point blank that Cole is a ticking time bomb waiting to go off. He could have a major complication at any point. He could get cholangitis, peritonitis, or have a bleed. Any of which puts him in a heap of trouble. I am sorry but this whole thing just ticks me off!!! The other week when I met with one of the transplant surgeons she told me that they could do this in as soon as a week or two. She said bluntly, they "own" operating room 7. Any transplant, living or cadeaveric, takes precedent over any other scheduled surgery. She said they are not very popular because they bump people all the time. So, now at what point does this surgery become more immediate!!?
    Furthermore, it seems to me that a transplant that starts at the beginning of flu season is bound to be riskier for infections the first few critical weeks. Why wait!!
    I am so steamed now, but after I slow my heart rate, I begin to wonder about God's timing. Am I suppose to push this thing to move faster or are we supposed to wait longer? What is God's will here? A friend gave Del some good advice. She told her to pray for obstacles. She said go ahead and try to do what you feel is right and pray that if it is not what God wants you to do, pray that He will throw up road blocks. And make sure you are able to read those road blocks as signs of God's will. I certainly don't want to be cut open tomorrow and have one third of my liver taken out unnecessarily, but I also don't want Cole to suffer any more. I absolutely don't want him to get too sick to be transplanted and right now that is all I see happening. How far down does Cole have to go before we do something about it? God, please, show us the way!!!!

July 8 , 2003 - Well it is official. I received an e-mail from our transplant coordinator this evening. And all the doc's have given me (Dave) the green light to be Cole's liver donor. The next step is they need to determine an appropriate date. Del and I are thinking sometime in mid August. It is going to be up to the transplant surgeons and their schedules as to when the surgery will actually take place. Am I nervous? Yeah a little. But excited at the same time. We know this is going to make Cole better. This could be the miracle we have been praying so hard for. One thing that I personally have been struggling with is God's timing. Are we jumping the gun on this? Well, my latest thinking is telling me that this is the path God has chosen for Cole. Our Cinci GI, Dr Bucuvalas, told us that it is better to transplant while Cole is still relatively healthy. And Cole is still pretty healthy. He hasn't had any major complications and we pray that he won't between now and the surgery date. We are not scheduling this operation tomorrow, we have a month or so to prepare as much as anyone can prepare for something like this. I feel that if God's plan is for Cole to get a cadeaveric liver He will provide one before the date. If His plan is for me to be Cole's donor than that will be the case. Remember Cole's PELD score is 19, so we could get a call anytime. But Cole is getting worse and we don't want to wait too long.
    On top of all of this to consider, we also need to realize that Cole could acutely reject my liver. In that case we don't have an immediate backup. If he did immediately reject, Cole would go "status 1" on the list. And unless there was another status one, he would get the next available liver anywhere in the U.S. We would also fly in my brother, who also has O blood type. (So Eric, make sure you stay ready and able) In acute rejection the child may only have about 24 hours before he dies, so it is very important that another organ be available. However, this complication only occurs in 1-2% of the transplants. And the statistics are that of those kids that acutely reject, nearly half are retransplanted successfully.
    The most important thing to remember here is that God is in total control of this situation. Sometimes it may not seem like it but it is true. God uses us as His tools to carry out His will. I pray that he uses me all the time for His glory. Sinfully, it would give me great pride to be Cole's liver donor. I'm sure if all goes well, I'll be on "cloud nine". I pray I give the credit where credit is due.  I need to keep in mind that it was God who created me. He made me match Cole. He gave me the characteristics to be able to do this. This plan may not necessarily be what I expect it to be.  Cole may get a cadeaveric organ first, he may reject mine acutely or chronically (slowly), Cole may have complications because of my liver, Cole may even die. I pray that isn't the case, but it is God who knows the number of our days; even before we existed. I know what I want out of this, I only hope it is what God wants.
    Some of you still may have questions about the procedure or about living liver donation. I'll try to post more information about the procedure a bit later. In the meantime here are some links about living liver donation www.livingdonorsonline.org/liver/liver.htm, Living Liver Donor Transplant. Thanks for praying so hard for Cole and all of us. I know most of my prayers have already been answered.

July 5 , 2003 - We are all finally home! Together as a family. The hospital discharged Cole this morning. His temperature was normal at 4am and 8am, both his blood and urine cultures showed nothing, so they let us go home. The best they can tell us is that Cole may have a little stomach bug. He didn't vomit at all in the hospital, but once home he chunked again at lunchtime. Del and I think he may not be tolerating one of his meds very well. We think the Lactulose may be the cause of his upset stomach. The vomiting happened around the time we gave him the med, and one the instruction sheet it says "may cause nausea". The problem is that he needs this medicine, now more than ever. Remember the lactulose is to help lower his ammonia level. Well the most discouraging bit of news we had in the hospital was that his ammonia level is going up. This is a result of the liver being  damaged. A healthy liver is responsible for cleansing the body of excess ammonia. With very high ammonia levels patients can experience excessive sleepiness (during the day), lethargy, hand tremors, and even brain damage. Cole's levels are a little high , but hopefully the Lactulose will help lower them and avert any serious complications. But this is all the more reason to continue the medicine that may be causing him to throw up. It was our local GI, Dr Houck, who seemed to pick  up on this early. He noticed Cole was sleeping more, agitated more and he wanted to jump on his ammonia when it was still just a little elevated. Well, Cinci told us to hold off on the Lactulose, so we did. Now that his numbers are going up we are back to using it twice a day. A credit to Dr. Houck. I think he hit the nail on the head with this one.
    Cole is still very miserable though. He just has this sad face all the time. He only seems to smile or laugh when Anna or Ripken come around. Sadly, neither will be around much during Cole's transplant. Cole has been resting a little better at night. We have been giving him Atarax, a sedative to help him sleep at night. It is funny, he is usually so sleepy during the day and so restless at night. From what we have heard this is common with the high ammonia levels.
    It seems like we spent two days in the hospital with very little answers. But I must confess, last night I had the most glorious, undisturbed, restful, peaceful, bit of sleep I have had in several months. And the night before, Del also had a good dose of sleep. Del prayed Psalm 127 a couple of days ago. ...."He grants sleep to those he loves." Well He answered. Thank you God!

July 4 , 2003 - Happy 4th of July! We are spending ours in the hospital... Cole was admitted to CMC yesterday because of a low grade fever and vomiting. He seems to be a little better today. His temp is still around 100, but he hasn't thrown up today. His labs didn't show anything "unexpected." We are still waiting for urine and blood cultures to rule out infections. They want us to stay at least one more night. If all goes well with the cultures we should be home sometime Saturday. How am I able to update this you ask? They let us leave for a few hours. We were totally bored and Cole was as well. He has still been his usual fussy self, so they called the GI on call and he said we could go home for a few hours. Cole has to be back around 7:00 though. I stayed the night with him last night and Del is staying tonight. I'll update you guys more tomorrow, when hopefully we have more answers.

July 2, 2003 - So much has been happening these past few days. I guess I'll start with Cole's condition. He is still very very cranky. Del had a very rough time while I was gone. A few hours after I had left for Cincinnati, Cole had somehow managed to pull his tube out while he was napping. He must have enjoyed it being out because he slept from 3-6pm. Del was a bit panicked when she went in and found him. She couldn't get in touch with anyone who was capable of reinserting the tube. The home health nurse couldn't be reached, our friend was out of town and I was in Cinci. Del just had to let him go to bed without his nighttime feeding. She at least thought he would sleep better through the night. Well shortly after getting the kids to bed, she realized Ripken hadn't eaten. She stepped out the door into the garage where I had left a pile of vegetables I had picked from the garden sitting on the step. My very coordinated wife tripped on the vegetables, falling off the step and breaking her little toe. In my defense, the vegetables were on the side of the step and the night before, I had left them because I was summoned in to help with Cole's equipment. But I was the one who never went back to bring them in the house, so I can take the blame. I am truly sorry. Anyway, that night when I called Del from Cinci, she told me all that had happened and was basically laughing about the situation. She had a few glasses of wine and was thinking that she, and Cole, would sleep through the night. I regret to inform you...she was wrong. Cole cried at 11, 1am, 3am, 5am, and 6am.  Del got very little sleep.
    The following morning Del made some phone calls to get emergency prayer. She must have had half a dozen people specifically praying for Cole's re-tubing to go smoothly. When the home health nurse, Peggy, came out to the house and reinserted the tube, she got it first try. Man, the power of prayer! The rest of the day went fairly smoothly. Anna is in a dance camp this week and loving it. But Cole was still his usual fussy self. Then at dinnertime, while Del was trying to give Cole his meds through the tube, it clogged. Again, Del was a bit panicked at first. She then stopped, collected herself and prayed. Sure enough she was able to unclog the tube and give him the rest. God truly has been answering our prayers!
    The night went the same as the past 10. Cole cried about every few hours. And once more Del got very little sleep. On top of the normal sleeplessness Cole had 2 HUGE blowouts. The doc had wanted us to start Latulose in order to reduce Cole's ammonia build-up. The problem with the Lactulose is...you guessed it, diarrhea. Cole had pooped all over himself; not once in the night but twice! Then just to top off the night, on a separate crying episode his diaper leaked urine all over his sheets. Poor Del had to change Cole's outfit 3 times and the sheets once. And remember it is not as easy to change Cole, because you have to unhook everything from him and the pump, then re-hook everything back up. Del really needs a break!
    This morning once again started with a challenge for Del. Cole's tube got clogged again. This time God chose not to answer her prayers and the tube stayed clogged. Del eventually had to pull it out. God tests us through things like unanswered prayer. He wants to see if we will still be faithful. Please pray that even in the midst of unanswered prayer we still stay close to God. Anyway, Cole had a prior GI appointment scheduled for this afternoon, so when she took him in the doc reinserted the tube first try.
    At Cole's GI appointment Dr Houck has decided to up his normal diuretic, Aldactone, and give him a single dose of the Diuril. He said that his ascites looked bad and we needed to try to get rid of some of that fluid. He also wants us to have lab work tomorrow. He wants to check the normal LFT's as well as his ammonia level again. We still aren't quite sure what is causing his restlessness. Dr Houck seems to think the two biggest suspects are the larger than usual amount of formula we are giving him or simply that his liver is dying and this in itself is making Cole feel "sicker". Remember the liver is responsible for removing toxins from the body. He wants to tackle his discomfort in many ways. First, increase his diuretic to reduce fluid build-up. Second, double up with both Prilosec in the morning and then also give Zantac at night. This will maybe give us a broader band of attack if it is reflux. Third, decrease the rate of his pump from 42cc per hour to 30cc per hour. And lastly, give him a combination of sedatives to help him get through the night. With all of this added medication this ups Cole's total medicines to 14. He is currently taking 14 different meds!!
    In another string of Jackson news; my Cincinnati trip went well. Our plane was an hour and half late. The first night mom and I went to a nice steakhouse for dinner (moms treat). Since I had to be NPO  starting that night, mom wanted me to have a good steak dinner. Yeah Mom!!
    The next morning I had my angiogram. The procedure wasn't as bad as I expected. They gave me the "down low" on what was going to happen. After they said, "we are going to  stick a catheter from your groin to your heart..." I told them to stop right there....and surprise me with the rest. Some things are better if I just don't know! Anyway I slipped on a gown and climbed on the table. They started an IV and then I had to ummm......get shaved!@! It was the job of a tech named Ross. I was joking with him, saying things like "Hey! Watch it down there with that razor!" and "You're not even going to kiss me first?". It broke the tension a bit. He joked back and said that he hadn't slipped with the razor in at least a week. The procedure itself was uncomfortable but not very painful. The initial local hurt a bit, but they had given me some medicines through my IV to take the edge off. Then the put a 1/4 inch puncture through my groin and placed a sleeve like device in the opening. Through this sleeve various catheters would be inserted and contrast would be injected to highlight the veins and vessels. They first placed the catheter through my femoral artery up into my aorta, just below my heart. The weirdest feeling was when they injected the contrast. A machine injected a solution into the aorta, filling it. I felt a huge rush of warmth from the inside, starting at my chest and running downward into my toes. It actually felt as if I had wet myself. They said that was a normal reaction. Once they had mapped my major veins they then continued to follow the veins that lead to my liver. In all they injected contrast about 10 times. Moving the catheter in and out through the various vessels, twisting it and turning it into smaller and smaller openings.  I felt that rush every time in various parts of my body. The procedure took about 2 1/2 hours from start to finish. I actually got to watch much of the procedure on the screen . I could see the catheter moving around and see the contrast light up the veins. At one point I could feel the catheter sliding along my spine. That was interesting. I was getting tickled from inside. The most painful part was after they pulled the catheters and the sleeve out, they had to place a lot of pressure on the femoral artery. The doctor was using great force to bare down and help the puncture in the artery clot. Imagine someone pressing their thumb, very hard, into the crease where your leg and your stomach meet. That lasted a full twenty minutes. The pain subsided after the first 10 minutes when the area basically goes numb.
    When they were finished they wheeled me into the liver step down room. This is the same floor and wing where Cole will be after leaving ICU. (They don't like to call it a step down because they can do everything ICU can do, but they just don't have the same nurse to patient ration) I was more pain than I thought I would be. I felt very bruised in the groin. I then had to lay flat on my back, without moving my right leg for 6 hours. That was difficult. I was also very hungry. Mom got me a big BBQ sandwich and a bottle of water, which I quickly devoured. After a few minutes I found out my bladder couldn't last for the 3 hours prior to and 6 hours after the procedure. I couldn't get up, because I would start bleeding badly. So I had to manage to pee lying flat on my back into a container......without soaking myself!! Go ahead guys try it... It is not as easy as you think. Somehow I managed to "pull it off" more than once.
    While I was lying there they had scheduled several meetings. The anesthesiologist came in to discuss their part in the living donor operation. He went over all the risks and complications with anesthesia and a major surgery. But the highlight of the day was the meeting with one of the transplant surgeons, who went over the entire living donor operation, including the risks, complications, what they would do, how they would do it, and all the stats of the operation. She told me I'll have an NG tube of my own, I'll have a catheter in my bladder, I'll have a drain tube in my chest, it will hurt to cough, sit-up, laugh, I'll be in pain to do anything for a while. But I'll have to push myself, and there will be nurses there to make sure I do push myself. She also said if it makes me feel any better, Cole will have all of this and a lot more. That certainly puts things in perspective huh?
    Our meeting was very interesting. The most encouraging part of the meeting was her general optimism about the operation and the chance of me being a donor. I am not going to go into more details as of now, but according to her things "look good."
    Anyway, after being discharged from the hospital I was still very sore. The rest of the night I was considerably uncomfortable. But the pain has been slowly improving and today, I'm home and just have moderate discomfort. But you know, this pales in comparison to what I have in store, but that in turn pales in comparison to what Cole will be going through. So please keep things in focus. Yes, I need prayers, but Cole needs them more than any of us. He will be going through the fight of his little, young life very soon. It is very strange to think just how sick he'll be. But we also know that above all God will be with him and us, and with God's will, Cole will get better.
    Things seem to be picking up speed lately. Cole is starting to slide downhill and transplant seems to be closing in. We need prayer now more than ever.

June 29, 2003 - Cole has been very miserable since getting his NG tube. The day after we got home from the hospital (June 25) we had a friend, who is a NICU nurse, come over and check out Cole. She suggested we go to a smaller tube in hopes of minimizing his discomfort. She explained how the smaller tube would be less irritating and he may sleep and eat better. We agreed and she attempted to put the smaller tube down. It was difficult for her to say the least. She felt the same unusual resistance I felt. Also Cole has a very strong gag reflex so he would gag and spit up the tube through his mouth. Things were a little scary for a while. She said she has never had this much trouble in her entire career. Cole was a wreck. Cole would scream his head off at each attempt then nearly throw up. When she would pull the tube out, I (Dave) would try to comfort him. Cole would just go limp in my arms. Del was upstairs crying and praying. Our friend was also a bit frazzled. After the 4th try she asked if she could pray first. I was doing that the entire time, but it was nice to see her asking for help. The very next try it slid in no problem. Thank you God!!
    The tube has a eased his discomfort a little, but we have run into other problems. First, Cole sleeps like me, all over the place. He also rolls a lot. There would be times he would cry in the night and when we went in to check on him he would have the tubing wrapped around his neck. We think we have solved this problem by placing the pump below his feet, rather than above his head. Now when he rolls it just spins the tubing into a coil, like a telephone cord. This has since lead us to other hurdles. It seems Cole likes to roll in one direction so when he has rolled several times it kinks the tubing causing the alarm on the pump to go off. We then have to go in unhook the tubing, untwist it, and reset the pump. Cole then gets up and starts crying and is difficult to get back to sleep. We still haven't figured out a solution to prevent him from twisting the tube. One idea would be to find out which way he likes to roll and "wined" him up the other way.
    However, his biggest problem now seems to be his reflux; or what we believe is reflux. Last night Cole cried form 9-9:30, 11-11:30, 1-5am and again from 6-7:30am. He only slept about 6 hours all night, and we only got about 1 or 2 hours of sleep. It was strange. We would go in to his room when we heard him cry, try to comfort him, end up leaving with him still crying, only to go back in and try to rock or sway him to sleep. He would lay his head on our shoulder as if he was exhausted and then all of a sudden arch his back as if he had a major pain and start screaming. Last night he literally did this for 4 straight hours. We tried to vent him using his tube, in case it was gas pain. But Del and I both noticed that he would kinda hiccup, which leads us to believe it is still reflux that is burning his tummy. He is still taking the prilosec, but Monday we will ask the doctor if we should maybe try something else.
    The other thing it could be is a milk allergy. When Cole started the pump, the doctors wanted us to give him Peptimen Jr through his tube. It is sorta like pediasure. I guess at some point we may take him off the new milk based formula and try a soy product, but as of now there is no plans for that.
    It has been a long week for us all. Cole more than any of us, but Del a close second. Del has gotten very little sleep the past week. She is constantly getting up to check on Cole. She often gets mad at me for not getting up, but honestly, often I don't hear him cry before she does. She is so in tune to his slightest whimper. One time I heard him cry. It was about 5am. I looked over and thought I saw Del in bed, so I snuck out and into Cole's room, only to find Del already standing over his crib. She had beat me to him. I read somewhere that women are more sensitive to noises like crying, and men are more sensitive to noises made by objects, like alarms, breaking glass and such. This proved to be true last night when it was me who heard his pump alarm going off first. Maybe the solution would be for Del to be on "cry patrol" and me to be on "alarm monitoring"?
    Please continue to pray for us. Cole more than any. On top of not sleeping well, he is in some kind of physical pain. Del and I need the sleep, but Cole needs much more.
    Also, I (Dave) am flying to Cinci tomorrow to have my angiogram done Tuesday, July 2. I'll be back Wednesday. I am almost welcoming the procedure. It may be painful, but at least I get to sleep. Pray for Del as she has to handle Anna and all of Cole's situation; alone, for 2 nights.

June 24, 2003 - Where do I begin? Yesterday started off with a mixed up doctors appointment. Our morning doctors appointment was pushed back until the afternoon. When we finally got seen, our local GI doc hadn't gotten all the info that Cinci had left with his office. After we filled him in on what the transplant guys wanted done it was off to the hospital. They came in to place the tube around 5 pm. Theo was Cole's nurse for the evening. Knowing that we will eventually have to be able to insert the tube, she basically walked us through the process. She told us to how to measure the distance and place it up through his nose and try to curve the tube downward. She told us when we feel resistance to blow into Cole's face to get him to swallow, then easily glide it down his throat into his stomach. She told us we definitely don't want to put it into his lungs. If it went into his lungs he would basically turn blue and then pull it out immediately. After it is in we are to check the placement using a stethoscope and a air filled syringe. If it was in the wrong spot it could fill his lungs with fluid and even cause pneumonia.  After scaring us half to death we were a little frazzled. Then Theo tried and things didn't go as smoothly as she would have liked. Cole screamed his head of as another nurse held him down. The first try was pretty scary. Cole fought them the whole time. He turn the brightest shade of red, he started gagging and thrashing and suddenly the tube popped out his mouth. Not what Theo was going for. But she calmly pulled it out and said that just happens sometime and not to worry. The second attempt was a charm. Right down, no problem. Del held Cole real tight and he just calmed down immediately. He then did great. He went on to eat a great dinner (the regular way) and chowed down a bunch of cheerios. It was as if nothing was wrong. Del and I were so happy. We took Cole down to the cafeteria and had a nice time just the three of us. After getting Cole ready for bed and ready to be "hooked up" to the pump, Cole somehow nuzzled down into the sheets and managed to pull the tube out. This was not good! This time I asked the nurse if I could try it. I figured this was as good a time as any. I had instruction and correction right there with me. I did just what she told me to do. I said a prayer, measured, inserted, blew in his face and started pushing. (Cole screaming the entire time). It slid in great for a few inches and then I started feeling resistance so I pulled it out. I tried again and the same thing happened. Theo thought I was in and I did too, but it just wasn't sliding as easy as I expected. What I think happened was I wasn't going fast enough nor continuing to blow in his face to keeping swallowing and keeping his esophagus open. I was going so slow that he basically closed up on me. It was very scary, but I think I could do it next time. Just pray next time isn't at 3AM and I am half asleep. Afterwards I felt bad. I hoped I hadn't hurt him and I held him for a while telling him how sorry I was I had to do that. I was asking for forgiveness from my 11 month old son. I sure hope I don't have to tube him, but I know I probably will someday.
    With the tube in and the pump going we thought things were going to sail through the night. WRONG!! Cole basically screamed the entire night. We may have gotten about 3 hours of sleep. It could have been several things making him restless. It could be he was realizing the tube was there, down his throat and out his nose. It could have been that his throat was sore after so many attempts. It could have been he was not used to having something in his belly, or the different formula we were using or it could have been as simple a strange environment. We can only guess what was causing him to cry. The nurses kept coming in checking on him. Cole was tolerating the feed well. His belly was always soft and he never spit up a drop. So from a clinical end he was doing well. But everyone was blaming his crying on a little bit of everything.
    At about 7:30AM, we basically got him up to start the day. We thought we would be discharged in the morning, but the our GI doc couldn't get there until noon. So we had to wait once again. Cole did OK through the morning, He was very exhausted and seemed like he was tired of being poked, held down, taped up, listened to, just being messed with. He really clung to Del. And I mean clung to her like a Koala bear. He was wrapped around Del with his arms and legs holding on to his closest protector. Nobody can hold him like his mom.
    The home health people came to the hospital and set us up with all the take home stuff. We were home around 3PM. Cole did OK through the day. He didn't eat much, but was in a relatively good mood. We had a visit from another home health nurse to help us get the pump set up and go over some things with us. It all seems a bit scary, but I guess we will get used to it. We fumbled through our new nighttime routine, but with God's grace we made it. And with God's continued grace we will make it through tomorrow and the next day and the next. We just have to keep our faith center on Him.
    One more bit of info. Cole was rescored for his PELD today. Cinci used the labs taken at CMC yesterday. His new PELD score will be 19!!!!! This is a significant jump. By my best guess this puts him near the top of the list for his age and blood type. Realistically we could be next to get a call. God only really knows, but we are definitely closer. The biggest factor that has caused this huge jump in score is his weight or lack of weight. He has gotten longer, but has lost weight. As of last night at his "official" weigh-in Cole was 16 pounds 10 ounces. This morning, after getting 16 ounces of formula through the night he was back up to 17lbs 4oz. But they are using the lower weight that was recorded at his blood draw. This new score also means he will get rescored now every month.
    On a lighter note, A very special thank you to Meredith Klaff. Meredith is a friend and neighbor who stayed with Anna overnight. She was wonderful. She played with Anna, took her to the pool, made dinner, bathed her, basically stepped in our shoes for the past day and a half. Bet she is wore out tonight!! HA! If you are not used to it three year olds will wear you out, physically and emotionally. Oh to be a fly on the wall those days. I'm sure Meredith has some "shenAnnagans" of her own to tell. Seriously though, thank you Meredith. We don't know what we would have done without you.
    Now I must go to sleeeeeeeeeeeeeeee............

June 19, 2003 - We got the results back from my CT scan and..........................still anxious...................is the suspense killing you...........I (Dave) am still a match!!!! The results were what we have been praying for. I still have one more test to go. And this is the definitive test that will map the veins and vessels in and around my liver. If this looks good than I can be a potential donor for Cole. From what I have heard this is the most painful of the tests. They are going to try to schedule the angiogram around July 1 or 2nd. So please be in prayer for me those days.
    I asked the tx coordinator if I needed to go through the physiological evaluation and they said I already did. I guess when we first met with the transplant psychologist back in March they were evaluating me then. Kinda scary. I thought we were just getting to know each other "in case" we needed them. I never thought they were actually evaluating my psychological status. Sure glad I took my medicine that day:-) ...................Joking of course, I take my medicine everyday HA! HA!
    And one other more serious bit of information to pass on. The transplant team has decided to have an Nasogastric (NG) tube in Cole. A computer analysis of his nutritional intake determined that he has only been getting about 60% of the nutrition required to maintain his current health. That is pretty scary. Only 60%!! We knew that he wasn't eating well and had hoped that the prilosec would start working. However, it has been a week and his eating has actually gotten worse. He is only taking about 1-3 ounces of formula/breast milk and is not eating much solid foods either. We have been very concerned about this for nearly a month now. The plan to tube him comes at somewhat of a relief. Now we won't have to worry about our inability to get him to eat. That will take a huge amount of stress off of us. We will know that he is getting what he needs to grow and maintain his health. But it is a very hollow victory, because now my son will be fed through a tube. How strange our lives have become to think we are excited about that.
    At this point we know very little about the tube. We have seen other kids with NG tubes, but there will be a huge learning curve. At first the plan is to feed him through the tube for 12 hours at night. A pump will be set to slowly pump a liquid diet into his stomach. During the day we will feed him the old fashioned way. Hopefully he will still eat with a tube down the back of his throat. If he doesn't they want to supplement daytime feedings through the NG tube.
    Cincinnati is arranging the procedure with our local GI. The procedure will be performed here in Charlotte. Cinci said that up there they admit the child for 24 hours to insert the tube, make sure the child is tolerating it ok, teach the family how to reinsert the tube and take care of all the maintenance. As of now we don't know how they do it here in Charlotte. Someone, either our local doc or the Cinci guys, will be calling us tomorrow to let us know when and how the procedure will be done. Also, Sam, our transplant coordinator will be calling me tomorrow to tell me the date of me angiogram.
    I'll let you all decide what we need prayer for tonight. Take your pick cause there is a lot of things happening. But thank you for continuing to lift us up. We truly feel your prayers and God is answering.

June 16, 2003 - We're Back. The Cincinnati trip went well. Cole cried a bit on the plane, but for the most part did great. Even Thursday night, Cole nearly slept through the night. It was unexpected, and totally wonderful! His GI appointment went well. We have a plan for his lack of eating. The docs there think that his portal hypertension may be causing some reflux. This would definitely explain his crying while he is eating and drinking. Cole is now on Prilosec 2 times a day. The docs told us to give it a few days to see if there is any improvement. And I must say it has been only 3 days, but I think we are starting to see him eat a little bit more. He is still crying a little, but it is not nearly as hard to get him to eat. They said they can give him some other medicine for reflux if this one doesn't work. And then when all our options are gone and if Cole is still not gaining weight then we will NG tube him. They said not to worry, that this is very common before transplant, because they want the kids to get as much nutrition as possible. But we are hopefully months away from the tube.
    The doctors said Cole looked pretty good. Dr Boucavalis's first words were "that's the type of belly we like to see with biliary atresia!" Del and I were shocked. We actually thought his belly was coming back. It turns out they want him to have a little belly for several reasons. First, it shows he is not "dried out". Dr B said, that he was concerned when we spoke with him several weeks ago about Cole having a completely flat belly. This is what prompted him to lower his diuretic.  Secondly, the bigger belly is good at expanding the abdomen to basically allow more room for the transplant operation. So it is actually a balancing act between a belly that is too big and a belly that is too small. (there seems to be a lot of balancing with this disease)
    Dr B also said the most shocking thing of all.....IF and I stress IF...I am a match for Cole. He suggested that we simply pick a date, and if Cole doesn't get a donor organ by that date, we should go ahead with me being his living donor. We were floored! We thought Cinci was apposed to living donors. Of course it isn't the preferred solution. They don't want 2 patients instead of one, but Dr B said that with Cole's situation a living donor option may be best. He said that the statistics show that basically the healthier the child is before transplant, the better the outcome. Cole nutritional status is OK and hopefully it will be improving soon. Cole has had no bleeds, infections or other complications. (PLEASE knock on wood) His PELD score is still in the middle of the pack. And it could be a while before he gets "the call". So he suggested we; in his own words, "go for it". Dr B said to pick a date in July or August, but Del and I would probably want to wait until September. It just seems so close and I don't believe we will ever be ready. It all rests on if God intends for me to be a match for Cole.
    I also had my CT scan while we were there.... Here is the story of the day, what a  mess. The first scan was done without contrast. I told the lab tech that I thought it was to be done with contrast and she said her radiology doctor said I didn't need it. After the scan, I happened to pass our transplant coordinator in the hall. I told her the scan wasn't done with contrast. She had a very hesitant look on her face and said that she was going to talk to the transplant surgeon and see what he wanted. She said she would page me on "the pager" (I hoped I wouldn't freak out when the pager went off) Anyway, we went to breakfast and I scarfed a huge breakfast. I was so hungry from being NPO (without food) all morning. We then went to get labs for Cole. They got him first stick.
    Then we had a few hours to kill so we went to see the Ronald McDonald House (RMH). That is the place we will be staying during Cole's transplant. It was nice. It is called the home away from home. And it is that. They have everything there you need. The fridge is stocked by donated items, fresh milk from the local dairy, fresh bread from the bakery. Volunteers cook dinner every evening. They have a library with online computers, a meditation room, exercise room, several laundries, sitting areas and many play areas for patients and siblings. They have a teacher during the day for the patients and groups coming in to put on plays and such. It is set up for families to stay months if they need to. They said one family that just gone home was there 18 months. Can you imagine!!! Their child had a heart transplant and was admitted before transplant. It is absolutely amazing. We all should be supporting our local RMH. Also start collecting your pop tops. RMH gets money for those. Afterwards they suggested we go to the Cincinnati zoo. It was only 2 blocks away and it is free to RMH guests. So they stamped our hands and off we went.
    Just when we get into the gate the pager goes off. It is Sam Brown our tx coordinator. She hurriedly asks if I had eaten anything. I tell her about my big breakfast and she sighs.... "Well" she says, "the radiologist screwed up". He basically ignored the written orders to do my scan with contrast and I needed them redone. They were going to rush me in and redo them but I had to be NPO for 4 hours. So they would get me in at 1pm. In the meantime I  had to get back to the radiology department to start prepping for the scan. I had to drink a huge bottle of nasty tasting fruit punch then get an IV and then retake the pictures. Can you imagine if I had not seen our tx coordinator in the hall? Or even forgot to mention the lack of contrast.  I would have had to fly back to Cinci to retake the test. I dare someone to tell me that wasn't God working. After the final scan was finished  I rushed upstairs to Cole's GI appointment.
    The docs said it may be as late as Friday until all the transplant doctors had reviewed my ct scan. And only after they have discussed their findings would they approve me to continue the testing. If I am approved the last test is the angiogram. I hear that is the least favorite of the test other than a possible needle biopsy. Hopefully there won't be a need to do a needle biopsy.
    We beg of you all to keep praying. Pray that the Prilosec works and Cole starts eating and gaining weight, pray that my CT scan shows favorable results and I am a perfect match for Cole, and pray for continued strength for our family and an unwavering reliance on God.

June 12, 2003 - Well we have had a very rough week. Cole has been crying more often than not. He just has this look of discomfort on him constantly. Only yesterday did he have a decent bowel movement. Poor little guy has been constipated for about 10 days. After his "blow out" he did feel much better. The other VERY frustrating thing is Cole's eating; or lack of. He is only taking around 10-16 oz of milk/formula a day. That is far short of the minimum sustaining amount. He just refuses to nurse or take a bottle and just cries when we try. He also cries when we try to feed him which is an ordeal in itself. It is so DANG frustrating!!! He needs to eat to grow and get stronger, but what do you do when he wont eat? I (Dave) was trying to do everything. When he would open his mouth to cry I would sneak a bite in. He would cry more. I would take him out and try to calm him down; which he did. Then the minute he gets back in his high chair he starts wailing. And this has gone on and on at every meal for the past 3 weeks. I have been so angry, frustrated, discouraged, mad, scared, you name it! I have been to the point of such frustration where I have said aloud "I think I am going to tube you myself!". How awful is that? The constant crying just digs into my soul. I really don't want him to get tube fed, but the fact is that he has not gained weight in 4 months. I am frustrated he is not getting the proper nutrition he desperately needs. Neither Del nor myself seem to be able to get him to eat. So it seems to me it would be somewhat of a relief to know he is getting the correct amount of nutrition. Man, this is upsetting!! Del gets so mad at me when I bring this up. She doesn't want to think about that. And of course I don't want Cole to be in this situation in which he needs to be tube fed.
    We are going to Cincinnati today. Our plane leaves at 2:30. Tomorrow Cole will be seen by the GI docs up there. Hopefully, they will have a plan for us. They told us over the phone that unless Cole starts taking more milk/formula they will take away all solid foods. Apparently, at this point Cole is getting the best nutrition from the liquids. So in order to get him to drink more they will have us withhold food. That should be fun!!! In my opinion that will only make matters worse, but that is the next step before the tube feeding. At this appointment Cole will also get looked at thoroughly, and re-evaluated. This of course means more blood. A lot more blood! We may have a new PELD score depending on the results of the labs. Cole just had another stick here at CMC Tuesday. Flo once again got him first try. I think she is becoming close to Cole. As often as she has stuck him she treats him like he was her own. This recent BMP showed his sodium is back up a little, which is good. It was a low because of all the diuretics. Cinci said if it dropped any lower they would have him admitted for some IV treatment. Thankfully, it looks like we will avoid that.
    Also tomorrow, I have a CT scan at Cincinnati to check the size and shape of my liver and determine if I am still a good candidate. If all goes well with that the last step is the angiogram.  Of course, if I am approve to be Cole's donor than we will still wait to try to get a cadeaveric organ. I am the back up or plan B if we can't or don't want to wait any longer. Remember a "whole" liver is better than a portion of mine.
    This whole situation is really tugging between me and Del. And I know things are  going to get much worse for Cole before they get better. I also know that the stress between me and Del is also going to increase. So please pray that our bonds become stronger between each other and between God. Also pray that I am a good match for Cole (that would take some stress away knowing we had a plan if things go really bad) And pray that Cole starts eating and his discomfort is removed and please pray that we never lose faith in God.

June 5, 2003 - After 5 days on the new diuretic, Diuril, Cole was down to an amazing 17 pounds on June 2. His belly looks so much smaller. But we have run into another bump. The Diuril pulled off a little too much fluid. Cole has been pretty constipated for the past 5 days. He is just dried out. Along with adding the Diuril, the doctors double his Aldactone (another diuretic). We believe this caused an excessive amount of fluid loss in a short time. June 3rd they decided to take him off the Diuril altogether. Cole has been in a very bad mood since then. He has been sleeping more, eating much less, very fussy, and very constipated. These are all signs of end stage liver failure. We frantically called the local GI today after Cole refused to eat again. Cole has been taking about 1/2 to 1/3 of his normal consumption of milk and food. It has been very upsetting to see him sitting in his high chair, writhing in discomfort, crying when we try to feed him.  Talk about a helpless feeling. We know Cole needs to eat and gain weight before transplant. The larger and healthier the better. But the catch is that as kids get sicker they eat less and sleep more. So many kids get feeding tubes before transplant to help them gain weight. We thought we may may have reached this point. After doing some research on the medicines Cole is on, we discovered that an increase in his Aldactone can cause increased sleep and decreased appetite until his body gets used to the change. When we saw Cole's local doctor today he decided to lower his Aldactone a little. He wants us to wait a few days and then call with an update.
    Also remember that all these diuretics affect Cole's kidneys. The labs they drew on Tuesday showed his kidney function is slightly out of wack. I am not yet very familiar with the tests and significance of the numbers. I am sure we will become as expert in kidney tests as we are in liver tests. Anyway, Cincinnati ordered another BMP (kidney tests) for tomorrow (Friday). They really watch these kidney numbers closely. Once again he is going to get stuck twice in one week. Flo stuck him again Tuesday. And once again got it the first try. Man, she is good!
   Other lab results showed most of Cole LFT's are worsening. His total bili is 8.3(up from 7.6) and his direct bili is now 5.0 (up from 4.2). His ALP,AST and ALT are up. But his Albumin is better and so is his total protein. It is such a balancing act the doctors are doing. They try to change this or that, but it always affects something else. They want to keep the number as close to normal as they can to keep him healthy, but the fact is that in order to move up in priority for a transplant he has to get sicker and his number have to get worse. Changing one or two tests only prolongs the inevitable transplant. It is such a strange feeling to almost want those numbers to be worse just to get this transplant over with. Of course we don't want our beautiful son to get sicker though. We simply aren't even sure what to pray for anymore. So all we do is turn it over to God, and take comfort in the fact that He knows best. Huh, it seems so easy to type that now. Only yesterday I was so mad at God. Cole wasn't eating, he was crying. I was thinking things like maybe we need to start tube feeding him just so we can make sure he gets the nutrients he needs. I was blatantly pissed at why God was doing this to Cole and our family. What is the reason behind making Cole suffer? As Cole's dad and protector I was thinking "how dare God do this!" In the midst of the chaos I had lost sight of the fact that God is still in control, no matter how bad things get. And I know things are going to get a lot worse before they get better. Cole is God's son and God is Cole's protector. I am merely a tool for God. It is so hard to keep that in focus when things are seemingly falling apart in front of you. It is amazing how God came to my rescue last night. I was over at a friends house, and they are going through a very very difficult struggle of their own. They too had been mad at God for letting bad things happen. We talked a lot about similarities in our situation and they suggested a book called Disappointed with God, by Yancy. They also suggested I read the book of Job. It helped them with their struggle and I hope it helps with mine. It is funny how God knows when I need him most. The very day I was so mad at God, he provided support through friends who I had no idea had a similar emotion. I pray He continues to provide for us.

  
May 29, 2003 - Well the Lasix dose worked. Cole lost 10.5 ounces in 4 days. Unfortunately after stopping the Lasix he gained it all back and more in 6 days:-(   Poor little guy is just so full of fluid again. His little tummy is rock hard. He just has to be so uncomfortable. The team at Cincinnati intervened and requested we use a stronger diuretic than the aldactone, but not as harsh on the kidneys as the Lasix. The new drug, Diuril, will be given daily. That and the aldactone are hopefully a longer term solution to Cole's fluid buildup. We can tell the fluid plays a large part of Cole's mood. After he lost that weight he was just a happy little guy, smiling, actually laughing. Laughter is something Cole doesn't seem to do much anymore. Then the fluid came back and he is back to being fussy. But we did have another "normal" baby milestone. Another tooth broke through. We hope this is the cause of at least some of the fussiness. Anyway, we started the diuril today. It may take a little longer to see if it has any affect on his ascites (fluid). The docs want him to go for another BMP Monday, but we will probably wait until Tuesday because we have the golf tournament Monday. Besides one more day before Cole gets poked is not going to matter except give his little arm a greater chance to heal from the last stick.
    Also, for those of you keeping up with his weight in his "Lab Results" page, you may notice that his weight has been hanging around the 18 pound range for quite a while. This unfortunately is not a good sign. With end stage liver disease children "fail to thrive". This means they don't grow and gain weight. Failure to thrive is a major reason many kids get transplanted. The liver isn't able to help break down the nutrients it is getting. By our best guess Cole has only gained one pound of actual body weight in 4 months.
    Despite all of this Cole still manages to give a smile. He is just such a strong, brave and loving little guy. He has a little wild man in him though. When he is in the swing outside he likes to go high and fast. When he is in the jog stroller he grunts when I slow down. The kid likes speed. We are definitely going to have to have a long father/son talk when he turns 16. As always please keep Cole and our family in your prayers. Some days we really really need them.
 

May 16, 2003 - Cole had labs done Wednesday and we have the results. His bili actually dropped. His total went from 8.1 to 7.6 and his direct dropped from 4.5 to 4.2. It is not a huge drop, but we'll take it. Many of his other labs looked a little bit better. His AST, ALT, APT, GGT, and total protein moved in the good direction. Other results were not as good. His PT, which remember is the clotting time of his blood, is 15.4. So this again means that his liver isn't producing the clotting factors needed and the supplemental vitamin k is not doing enough. The doc is upping the vitamin k to see if that helps. Also his albumin is low. Albumin is a protein that circulates in the bloodstream. It is synthesized in the liver. A low albumin is an indication of poor liver function, so naturally it would be low in Cole's case. The scary part about a very low albumin is that it is usually near normal until cirrhosis and significant liver damage is present. So as Cole's liver becomes more irreparably damaged, we will see this number go way down. Right now his albumin is low, but not terribly low.
    As you may have noticed his calculated PELD score is up from 12 at last labs to 14 this time. The biggest factors that affect the PELD score are total bil, albumin and INR (PT). And 2 of the 3 main numbers to watch went the wrong way. So if Cinci were to use these labs to rescore Cole, he would be "higher" on the list. However, he is still listed at a PELD of 13; at least until his reevaluation in June.
    We saw Cole's GI doctor today, and Cole's ascites is pretty bad. His little belly is so distended. The fluid is making him very uncomfortable. The doc decided to place him on Lasix, a strong diuretic, at least through Monday. This will hopefully make him pee off some of that fluid and ease his discomfort. The problem with Lasix is that it can harmfully affect the kidneys, so the doc wants him to have a basic metabolic panel (BMP) done Monday afternoon. This means another poke. Poor little guy has just gotten stuck Wednesday. I'm not sure how his little veins are holding up. When we went to the lab Wednesday, I asked for the top dog there. Flo, the head of the phlebotomy lab, stuck him first try. It was wonderful to have Cole's pain minimized. The last time we were there it took 3 tries. You better believe I'm requesting Flo again Monday.
    Anyway, other than being a little fussy (probably from the ascites), Cole is doing OK. He still can find a smile in the midst of all of this, unfortunately it just doesn't seem to be as often. Please pray for the Lasix to work and not adversely affect his kidneys.
    And lastly, I (Dave) need to have an updated GI physical before going to Cinci. It seems the physicals are only good for 30 days and I won't be going to Cinci until June 13. Lets hope it is not as "COMPLETE" as last time. I can do without the old "howdy do" :-(

May 13, 2003 - As you know I (Dave) have started the testing to be Cole's donor. The initial tests went well. I passed the general physical and the colonoscopy showed nothing but one small "hemie". (I told the docs that was what the faint traces of blood were  probably from, but anything for my son) We did have a slight concern about the one of the results from the blood work. When I was a teenager I had Mono. Well, apparently mono is a form of Epstein Barr Virus (EBV). This virus can sometimes pose problems in transplant kids who have not already been exposed to the virus. The virus can possibly lead to post-transplant lymphoproliferative disease (PTLD). What they believe happens is that the interaction between the immunosuppressant medicines and the active EBV virus can potentially lead to PTLD. This occurs in a small percentage of transplant patients. And PTLD can potentially lead to lymphoma, which is basically cancer of the blood cells. This is a long line of small possibilities, and most kids don't have problems that serious with EBV positive organs, but there is still a very small possibility of this happening sometime in the future.
    However, the transplant team feels that this is a small risk and have given me the green light to continue with my testing. My next test will be in Cincinnati on June 13. This will be a CT scan (computed tomography).  This is a high tech x-ray in which I'll have to drink some yummy stuff and lie still for a while. Basically this will give the surgeons a 3 dimensional image of my liver and surrounding anatomy. If things look good after this test then I'll have to go back to Cinci for an arteriogram. Unfortunately, do to scheduling issues, they can't do both CT and arteriogram back to back. So it looks like we are going to have to take two trips.
    Cole will be going for his regular blood work tomorrow, and his GI appointment Friday. These labs will give us a good indication of how fast he is getting sicker. His last set of labs were 3 weeks ago. So please pray for a good painless stick (last time it took 3 tries and he screamed his head off), and pray for good results. His little belly looks so full of fluid today!

April 24, 2003 - Ok, OK,  I'm a day late posting his lab results, but things are a bit hectic these days. Well the results are not good again. His bili is still climbing. His direct is now 4.5 and his total is 8.1!! Most of his other LFT's are up as well. We are starting to see his AST and ALT climb. This is the first time these numbers have gone up in a while. What this means is that his liver is now getting damaged. Remember as his bili goes up this is an indication of bile being stored in the liver and we all know by now that bile in the liver is BAD. This over time starts destroying the liver.  And these numbers going up is an indication of that. The good news, well sort of good news is that his PT has gone down. What this means is that the extra vitamin K he has been prescribed is working. PT is short for prothrombin time. This is a measure of the time it takes for blood to clot. The liver produces the blood clotting factors necessary, so the longer it takes for blood to clot the less factors are being produced by the liver. But PT is also an indicator of a vitamin K deficiency. So by increasing his vitamin K we basically decrease his PT. Confused? So are we. What this good decrease in PT did was it lowered his calculated PELD score. If recorded at UNOS, this would basically lower his organ priority even though it doesn't necessarily mean he is better or not as sick. Cause the almighty indicator to this disease is his bili level. When that is going up it is only a matter of time before the other number go awry. The other good news is that Cincinnati will not change his PELD score at this point because it is not a significant change and the bloodwork was not done for his 3 month reeval.
    Also in the news....Cole is in the news. We did an interview with WBTV a CBS station. The reporter, Tonia Bendickson, did a fantastic job at getting his story out. We are also doing a live radio interview tomorrow. It will only be about a 5 minute spot, but it will give us a chance to plug the upcoming Kid's Carnival.
    Overall Cole is doing well. He still has his fussy days, but honestly I think that is do to normal baby things, like teething. This boy is getting all his chompers now.
    Oh yeah! I (Dave) have started the work-up for living donor. I had blood work done today. Man, I think they drained me dry. But I didn't pass out this time. I also had my general GI appointment. It went OK until they found a faint traces of  blood somewhere (You can guess where). Well, they said it could be nothing, but they couldn't let it slip through, so they have scheduled me for a colonoscopy next week. That doesn't sound like something fun, but whatever it takes for my son. Also next week I have to get a chest x-ray and EKG. They should be easy. After all that is done, I have to go to Cincinnati for an MRI, angiogram and psychological  evaluation.  The last thing is very questionable.
    As always please keep Cole in your prayers and please pray that I am a perfect match for our beautiful little guy.

April 16, 2003 - Cole had his ear tubes put in today. It was amazingly quick!! The doctor was in and out of the OR in about 15 minutes. Yesterday we had an appointment with both the anesthesiologist and the ENT doc. The anesthesiologist said that kids with current fluid and infection tolerate the initial reaction to tubes wonderfully. Those kids are just relieved to get rid of the pressure. Kids who don't have fluid or infection tend to find the tubes a nuisance and are very fussy for awhile. Well, after that appointment we met with the ENT doc and after looking at Cole's ears told us his ears were crystal clear. So with that we expected a day of extreme fussiness. However, Cole did great. He came out of the anesthesia quickly and started nursing right away. He was just so hungry. The hardest part of the day was keeping Cole happy for the 2 hour wait prior to surgery. But the day ended up being pretty good. Cole was still a little fussy, but not the severity we were expecting. Del and I still haven't figured out what is causing him this discomfort. We still think it maybe new teeth. But our normally cheerful child has been irritable for about 4 days now. Could it be his liver problems causing his irritability? As kids bili goes up sometimes they start to itch very badly. Could this be the start of that complication? We still don't know if this is normal baby stuff or something more serious.

April 10, 2003 - We went to the pediatrician today for Cole's 9 month check-up and a recheck of his double ear infection. Cole is still 25% in height and now 25% in weight. He has dropped in weight from 50%. Most parents would be alarmed, but to us it means the fluid is coming off. His current weight is 18lbs 6 oz. That is down almost a pound!! The GI doc had upped his diuretic a few weeks ago and it seems to be working. Cole is not reaching his normal milestones like one would expect from a "normal" baby. But we all know Cole is special. We are just happy he is now starting to sit up a little. Cole has his own set of milestones! Cole also got his Hep B shot today.
    And the update on the ears is,......after 2 complete rounds of different antibiotics......, his ears are still infected. The next step is more Rocephin shots. We had to call the transplant team first. They don't like to pull out "the Big Gun Antibiotics" though, so they decided that it is time to take ear infections out of the picture. They want Cole to get tubes for his ears. There is a chance that if he had an infection he would not be able to be transplanted, so they just want to simply prevent future ear problems. Meanwhile, we have to do at least two of the Rocephin shots. He got one of the shots today. The second shot will be on Saturday. We have an appointment with an ENT doc Tuesday and have scheduled the tube procedure for Wednesday. (one more specialist to visit)
    It was a very hectic day and I had Anna with me as well, so it was very challenging to keep everyone happy for the 3 hours we were there, but with God's help and being superdad, I made it.
    Also, Del took Cole to the chiropractor this afternoon. We believe the adjustments Cole is getting is definitely helping his posture. With all that fluid it just has to be a strain on his little back and muscles. When Del told Dr. Jeff about our hectic previous week, he offered to come out to the house to work on Cole. A doctor that makes house calls.

April 2, 2003 - It is now OFFICIAL!!! Cole is on the UNOS list for organ transplant. We have made arrangements with Medical Air Flight to fly us to Cincinnati when the "call" comes. This is  a service that has 3 medically equipped planes and they are on stand-by 24/7. At least one nurse will fly with us and a respiratory therapist if needed. The flight will cost just under $6,000. We looked into getting a cheaper charter, but they are not medically equipped planes. We don't know when the call will come and what condition Cole will be in, so we wanted to be safe and reserve the Medical Air Flight. We want to thank Del's sister, Sarah, for helping us make the arrangements. We were a little too spent to tackle the hours of phone calls.
    Cole also had a visit with his pediatric GI. Nothing really new, but as Cole's bili is rising so is the yellowing of his skin.
    Del and I are going to be starting the preliminary work up for living related donor. We have to give the transplant team proof of our blood type, height and weight. From there the transplant team will decide who they think is best to be tested first. Please pray it is me.  Guess it is a protective guy thing, but I want to spare my wife the pain of having a piece of her liver removed if at all possible. Also, just think, when Cole is older and at the beach, kids might make fun of him with the huge scar. Cole could then just point over to his dad and say "I have a scar just like my daddy." It would be a badge I would be proud to display for my son. However, if I am not a match Del is more than willing to step in.
    Finally, Cincinnati Children's Hospital decided to list him at his new PELD score of 13.

April 1, 2003 - Cole isn't going to need a transplant... April fools. Boy I really wish that were the case. We heard from Cincinnati and Cole is nearly officially on the list. The state consortium gave approval for him to be added to the list. Now we have to arrange air travel to be able to arrive in Cincinnati within 6 hours. The hospital will not actually put Cole on the list until they have proof we have made arrangements. Unfortunately, it is not as easy as booking an open ended flight. We have to have a charter type plane available 24 hours a day, 7 days a week. And not just a Cessna. (sorry Uncle John) This plane has to be able to travel in all kinds of weather and the pilot has to be ready to go at a moments notice. Also, we have to have a back-up plane ready. Our insurance case manager is looking into whether this will be covered under our insurance. If it is, we still have to make arrangements ourselves. If it is not, the cost could be around $7,000!! Also, remember it is not uncommon to get "false alarms". Sometimes upon arrival they find reasons the transplant cannot take place, like if the donor liver is unsuitable or if Cole has an infection. A false alarm means we have to somehow get back home and do this all over. Meaning another $7,000 flight!! But this is the kind of things we are fundraising to cover. We just have a looong way to go.
    Another interesting thing we found out was how the PELD system works. Cole will be rescored every 90 days when his score is between 11 and 18. This means that the labs done before the 90 days don't "count", unless there is a drastic change, or if Cole gets sick (cholangitis, varicial bleeds, etc.) So he will be put on the list with a score of 12, even though his recent labs showed his condition deteriorated and his score should be upped to a 13. This is supposed to prevent one lab from making his score bounce all over the place. Up one day and down the next. As his condition deteriorates over time his score will go up. When it reaches 19 he will be rescored every 4 weeks and over 25 every 7 days. We will keep a separate account of current listed PELD score verses calculated score, based on the most recent labs, just to see how far apart they are.
    Anyway please keep the prayers coming. I think, at the moment, Del and I need them the most. No, I take that back. I'll take any amount of stress and discomfort if only God would heal my son.

March 31, 2003 - Well we just had labs done today. The most discouraging yet. Cole's direct bili has shot up to 4.3 and his total to 7.2!!! It is odd, some of the less important tests such as AST, ALT and GGT are actually down. While the most significant numbers are up. His PT is up to 15.2. This basically means that Cole's liver is not producing blood clotting factors as it should. The number means that it is taking his blood 15.2 seconds to clot under specific conditions. The normal time is between 11 and 13.4. As his liver becomes more diseased there will be less clotting factors produced resulting in higher numbers. Also his albumin is dropping, also not a good sign.
    Good or bad Cole didn't even make a sound while they drew his blood. Guess he is getting used to it. On top of the days blood draw and bad news with lab results we also had to take Cole back to the pediatrician.  His double ear infection still hasn't gone away with the first round of antibiotics, so we are on to aumentin to see if this will get it. Since he is already on an antibiotic for his liver, the combination is making him have loose stools and really irritating his little bottom. Cole has been screaming a lot today his ears are just so sore. Please pray for God to ease his pain. It would be such a relief to get the ear problems out of the way. I don't think his liver situation at the moment is causing him any pain, just these dahw gawn ears!!
    Also when we got the lab results back I immediately plugged them into the PELD calculator and his new score is now a 13. Kinda scary. He is moving up on the list. At least when he "officially" gets put on the list. We still haven't heard from the transplant center about the final state approval. Anyway Del and I are getting along OK. I think we both had some bad moments today. It was a very stressful day.

March 21, 2003 - The transplant coordinator at Cincinnati just called and said that Cole "passed" through their committee to be listed.  His PELD (Pediatric Endstage Liver Disease) score is a 12.  The next step is to submit his case to the state consortium to have them approve adding him to "the list".  She said we are 90% there.  Once final approval is given, we will officially be on the list, will be given a pager, and could theoretically get a call at any point for a liver.  When I asked her what her best guess was in terms of timing, she said she just couldn't say.  But that there are lots of kids on the list with Cole's blood type (O) so that list is a little longer than others.  When the PELD score is between 11 and 18, they reevaluate and rescore them every 3 months.  When the PELD reaches 25, they reevaluate every 7 days.  The surgeon told us he has never transplanted any child with a PELD score under 15.  I am shaking right now.  This is really weird.  Though hopefully he will remain stable for a while and transplant will be months (years hopefully???) away. We ask that you pray for the perfect liver for Cole and please pray for the donor family. They don't know who they are yet, but God does.

March 14, 2003 - Well, I talked to the transplant coordinator today............ and...............are you ready..............They were unable to present his case Thursday because the transplant surgeon was unavailable. They will present Cole's case next Thursday. So once again......We Wait. Basically, what happens is the team gets together and presents their findings. They then vote to include him on the list or defer him. A deferral means they feel he is stable enough and they wait until he gets sicker to be listed.
    On the bright side, after several fussy days, Cole is nearly back to his cheerful little self. I don't blame him though, I too would be fussy after the events earlier this week.

March 13, 2003 - Where do we begin?....Our trip to Cincinnati was very exhausting. Monday was packed with meetings. The liver care center has its own team of experts. Each different area of transplant life is addressed by a professional in that area. We met with the pediatric GI, the transplant surgeon, the transplant financial coordinator, the transplant nutritionist, the transplant psychologist, and the transplant chaplain. We were so tired after that day. We then spent the night at Meredith and Eric Klaff's parents, Sam and Joanne Sudman. They were the most gracious hosts. Joanne cooked a delicious dinner and we enjoyed their company very much. After looking at Tuesday's schedule we thought it would be easier than the previous day. Boy were we wrong! It started out rough. Cole didn't sleep much Monday night and kept us up nearly all night. He was scheduled for an MRI in the morning, so he couldn't eat after 8am. Upon arriving at the hospital our first order of the day was Labs.  The lab techs stuck him twice, but to no avail. He has such tiny veins and since he was a little dehydrated they just couldn't draw anything. They basically gave up and sent us to his MRI with band-aids over both arms and Cole screaming his head off. We were  a bit late so they whisked us in to administer the oral sedation. They gave him a dose and told us to rock him to sleep...20 minutes later and he was still wide-eyed. The nurse came back in and gave him another dose, again 20 minutes later and the boy was still not completely out. So with Cole strapped in to the MRI table 3 nurses and a doctor tried for 15 minutes to start an IV to administer a different sedative. Remember Cole was just poked twice to get blood. So he was mad and sore already. That kid was fighting them like you wouldn't believe. It was very upsetting to see him like that. Del and I were literally on our knees asking God to guide the doctors hands and ease Cole's pain. After they got the IV in he was asleep within minutes. Del and I were emotionally and physically exhausted. After the MRI and while he was still asleep, they did a hearing test. Apparently, many of the medicines he will be on post transplant can affect his hearing, so they want to establish a baseline. Cole did great - his hearing is normal. While he was still a little groggy, we met with the transplant team social worker. Then it was back to the lab for another try at blood. They left the IV in so we could just draw the blood off of that.  But unfortunately, they didn't heperinize it.  So it was clotted by the time we got to the lab.  This kid had already been through so much. But God knew we needed a break and a different tech was able to get the vein on the first try, and filled 10 vials of blood for the extensive tests they needed to run!  Amazingly, Cole barely made a sound. He was still very groggy. Of course it was still a little upsetting. It looked as if he had just given up and said "go ahead and stick me." While he was on the table the nurse said he was seemed to be breathing funny. He was retracting when he breathed and he was making an unusual noise. They wanted us to go back to recovery and let them check him out. The nurses and doctor examined him. They thought that the fluid he was given during the MRI, coupled with his ascites (fluid already in his belly) was compressing his lungs causing him to work to hard to breath. They first tried a nebulizer to help open his airway. After an hour the doctor said it sounded worse. So plan "B" was to give him a very strong diuretic called lasix in order to help him pee off some of that fluid. They forced  him to take the nasty tasting oral lasix. They also asked us to stay another night in Cincinnati (near the hospital) in case he had respiratory problems during the night, and also so they could listen to his lungs the next morning. It was nearly 8 pm when we left the hospital. They recommended a nearby hotel with special rates for patients. Cole slept much better that night. He was still so drugged up. With a liver disease we were told the sedative given earlier may take up to 36 hours to be out of his system. They also told us since the liver is responsible for synthesizing the sedative, and his liver was diseased, that is the reason he needed so much of the sedative. They next morning everything checked out OK. He had peed like a race horse and was breathing much better. So we headed straight home. 9 hours later we made it. Exhausted and glad to be home.
    But the best news of all is Cole's direct Bili dropped from 3.4 to 2.8. Thank you Jesus! We don't have all the results of the labs or the MRI, or even the doctors evaluation, but when we do we will post them. Just when things were looking bad we get a small reprieve. This just proves how strong the power of prayer really is. Thank you all for praying. God truly is listening!

February 24, 2003 -Home! We were sent home from the ER at around 8:30pm last night. We had to wait forever for the lab results. The ER nurses were very unorganized and it took two sticks to get blood. He screamed his head off. It actually took four of us to get blood; a nurse on one of his arms, Del on the other arm, I was handing them vials for the blood and a nurse was doing the poke. They were dripping blood everywhere. A few months ago I would have passed out at the sight of that. Then after about an hour and a half of waiting they came back and said they didn't get enough blood and were going to have to draw again. Well, this time it went much better and they hit the vein the first try. They also left a catheter in the vein just in case they needed access again, it would be less traumatic for Cole. After several more hours they came back and said the lab had screwed up and only did a few of the tests they wanted. So we waited, and waited, and waited. His temperature had been coming down on its own, so we decided to escape to the cafeteria with Cole. When we came back they said his bili hadn't changed dramatically. A rise in bili and other LFT's would indicate cholangitis. So they discharged us. Think that is the end.... Not quite. We were about 10 minutes out of the hospital and we realized they had left the catheter hanging in his arm! We had to turn around and go back so they could pull it out. I think they were a little embarrassed about our whole ordeal. It took a total of 7 1/2 hours for them to tell us his bili had gone up .1. His other LFT's had gone up slightly. That in itself isn't great news, but it could have been so much worse. God is so good to us.

February 23, 2003 - Here we go! Cole spiked a fever of 101.2 this morning. We are waiting to get officially admitted to the hospital. Cole has been irritable  the last few days and this morning Del said his stool color looked paler than normal. All of these are signs of possible cholangitis. This is a bacterial liver infection that needs to be treated immediately with IV antibiotics. Of course there are other possibilities, such as a viral infection. At this point we don't know what is going on or what we are doing. We also fear the fluid is coming back. Cole has gained a pound in 4 days. We beg you to keep Cole in your prayers.

February 19, 2003 - Well, we had labs yesterday and got the results when we went to the GI's today. Once again his Bili went up:( This time it went up .4 in a week. We are very discouraged. All his other Liver Function Tests (LFT) are also up, but very slightly. What this means is that bile is not being removed from the liver as effectively. As the bile sits in his liver, it will start to destroy it, and when that happens his other LFT's will go up more dramatically. Right now the bile hasn't harmed the liver drastically, but if it continues to increase or stays the same we will see the other numbers going up as well. I know we are in this for the long haul, but the last three tests have shown an increase in Bili levels. We may be seeing the "trend" we have been dreading. However, we are not beyond hope, God can intervene at any point if it is part of His plan. On the bright side, Cole's belly is looking better. He has lost over 2 lbs of fluid. His belly also looks a lot less vascular. He just feels like a squishier little baby.  The doctor said he looks good, but he is also happy we are going to Cincinnati soon. He is also talking about the possibility of placing Cole on a burst of steroids to help get his bile flowing. We should know what the plan is next week. Please continue to pray for Cole.

February 12, 2003 - Cole had an appointment at the GI today. The diuretic (aldactone sp?) is working - Cole has lost about a pound of fluid since Sunday. The doctor confirmed that Cole has portal hypertension, and the only way to cure it is a new liver.  I guess we have have made the official turn towards transplant. Of course God can still heal Cole if that is His plan, but it seems the Big Guy is sure testing us. To complicate matters Cole has also developed RSV, which is a respiratory virus. We had to take Cole to the pediatrician today for a breathing treatment. He screamed his head off the entire 15 minutes the mask was on; and then 15 minutes afterward. It was very traumatic for both of us. The treatment helped a little. We go back tomorrow for another. Strange thing  - Cole has been taking shots to prevent RSV every month because it be very dangerous, especially for preemies. The doctor also said it was a good thing he was on the diuretic, because she felt that with all the fluid that was in his abdomen on Saturday, he would probably be in respiratory distress by now if it was pressing on his compromised lungs. (that was God once again). I felt as if Cole wasn't getting any breaks, but Del lifted my spirits by simply saying, "maybe he has gotten breaks that we just don't know about." How true that is. God is always working.

February 11, 2003 - Well, we got labs today. His Bili is up to 2.9. Not what we have been praying for. Also nearly all of his other numbers are up slightly. We are not too worried just yet. Cole has the same bug Anna had a week ago. He is coughing and wheezing and  very irritable. This could be making his numbers go up. They put him on Aldactone (sp), which is a diuretic, to help with the fluid in his belly. It is a mild diuretic so the Doctor told us they may have to go with Lasix, which is stronger, but also affects potassium levels, if it doesn't improve his ascites.  Despite all of his problems Cole is still in relatively good spirits. He is a strong little guy. But he has to be. He is carrying about 2 extra pounds in his belly. We go to the GI tomorrow.

February 7, 2003 -Cole had an ultrasound this morning.  He cried and cried the whole time, but it was not painful by any means.  He just hates getting poked. The ultrasound showed fluid throughout his belly - a complication of his disease, called ascites.  The tech estimated about 1 liter of fluid.  His spleen was also enlarged to about twice normal size.  We must assume that he has portal hypertension which has triggered the ascites and enlarged spleen.  It can also cause varices, which are enlarged veins that bleed internally.  (Fortunately we have not seen any varices in Cole at this point.)  They may treat the ascites with a diuretic pill or perhaps tap his belly to drain it, but we haven't discussed a plan with the doctor yet.

January 28, 2003 -The GI said that the rocephin shots (antibiotic to treat Cole's ear infections) has a tendency to make bile flow very sluggish and could have caused Cole's direct bilirubin to elevate. So he wants to wait 2 weeks and recheck levels again.  He also thought that Cole's belly looked a little more distended than would be expected, even considering that his liver is enlarged.  (His belly measures 21" right now).  So he is sending us for an ultrasound on February 7 to see what is going on.  He specifically wants to look at the portal vein to make sure that Cole does not have portal hypertension.  He also wants to see if Cole has fluid in the belly.  Hopefully Cole's big belly is simply an slightly enlarged liver and fat!  We are also scheduled to go to Cincinnati Childrens Hospital on March 10 and 11 for a transplant evaluation.  This will be a series of tests and meeting the entire transplant team.  Dave and I decided it would be good to meet them all and get in the loop while we are NOT in crisis mode.  This way, we can actually remember what they tell us.  Plus they can start to monitor Cole's status as well.  (Cole's ears have cleared up by the way.)

January 27, 2003 - We had bloodwork done this morning in preparation for our appointment with the GI tomorrow.  Unfortunately, most of his levels moved in the wrong direction.  (see Cole's lab results for the details)  I am disappointed, but not devastated.  First, he is battling ear infections.  From what we understand, any infection in the body can do screwy things with lab levels. But even if its not the ear infections causing it, it just may be a "blip."  We want to get his ears cleared up, then go back in a few weeks to check bloodwork again.  Even at that point we wouldn't necessarily call it a trend.

January 22, 2003 -Cole has still been crying a lot, even during feedings.  So we took him back to have his ears rechecked (its been 6 days on the Omnicef so we should have seen improvement by now.)  Well, he STILL has the ear infections.  We are now going to do a series of Rocephin shots to wipe it out hopefully.  On another note, we go back to our GI doctor on January 28th and will have more bloodwork done that day.  We also learned that the Biliary Atresia Research Consortium is going to be presenting an update on the disease in Cincinnati on March 16.  We are planning to stay with Sarah & Rob in KY, and attend the BA meeting.  We are also going to see if we can meet with the transplant surgeon at Cincinnati Childrens Hospital while we are there.  (Since this is the hospital we would be using for transplant.)

January 17, 2003 - Cole went for his 6 month checkup today. Weight is up to 17 lbs .5 oz - the 50th percentile! Length is still 25%tile.  He is doing well right now except for ear infections.  He got the first double ear infection Dec. 9, and then again January 6.  It still hasn't cleared up.  Not surprising, Cole is crying more and is irritable. We are now going to try Omnicef antibiotic to see if that clears it up.

December 31, 2002 -Yeah!!  Direct bilirubin is down to 2.3! And GGT dropped from 1397 to 583!!! Our God is an awesome God.  Cole is looking great, acting great, and gaining weight.  What a wonderful way to end this crazy year 2002.  Thank you all for your prayers and keep them coming!  We still aren't in normal range yet - need direct bili to drop to .5, & weight gain to continue.  A funny little side note about getting the lab results... I am so anxious to learn the results the day of the test, that I discovered a way to get them quick. While the hospital lab typically only gives results out to the doctor, I realized that if you call up and act like you know what you are talking about, they will just give it to you.  So the last 5 times we've had bloodwork, I just call up the lab and say "I'm Del Jackson, I need lab results.  History number is..... Please fax them to me at..."  And they have done it!  Well today, the girl got a little wiser and said "Now who are you?"  Busted!  I sheepishly said, "I'm Del Jackson". pause, pause, and in a quieter voice said "Cole's mom."  Well, the girl said, "I can't give them to YOU.  You'll have to have the doctor call."  Oh well.  Luckily the doctors nurse quickly got them for me.

December 20, 2002 - We went back to Johns Hopkins today for a follow-up visit with our gastroenterologist there.  I took a spreadsheet of all Cole's lab trends (you know my nature to be organized) and asked her to draw conclusions on the labs, and to make a prediction about transplant.  Dr. DeRusso said that it appears that Cole has partial bile flow due to his bilirubin levels decreasing and the pigmentation in his stool.  But, he does not have 100% flow because his labs still are not in normal range.  She said they usually think of the 3 month mark post surgery as a point in time where you can draw such a conclusion.  She also predicted that Cole would need a transplant in 1 to 2 years.  She was careful to state that this certainly could change, but that based on her experience with these cases, that was her best guess.  I accepted her answer matter of factly, and was fine all day long. Then I lost it Friday night.  For some reason, I