MY name is Coltyn and I was diagnosed with Biliary Atresia at 2 weeks old. I was born on April, 30, 2011 a happy healthy little boy. Then I went to the peditrition and I was getting more jaundice and not gaining weight so I had to have blood drawn and that is when they discoved my liver counts were all very elevated for a newborn. From this point on I was refered to STL Childrens and saw a Liver Specialist there. I had a liver biopsy done when I was 5 weeks old and then my kasai done when I was 6 weeks old. For those that dont know Biliary Atresia is a rare liver disease where the ducts in the liver dont form all the way and bile backs up in the liver damaging it. This disease effects 1 in 20,000. Then 80% of the kiddos with this wind up with a liver transplant before the age of 5. I am going to be in the 20% that dont need a transplant until adult hood.
WOW it has been 9 months since kasai to the day!!! I cant believe that is has been that long already!!! I remember that day as if it was yesterday. AWFUL AWFUL!!! I was a nervous reck and didnt eat all day long cause I thought if he cant eat neither can I. All i wanted to do was sit and cry but I had my wonderful husband and family there to support me and help me through it. I was so scared that we were going to lose him and that he was to little to be going through this, but the nurses and doctors knew how to put my mind at ease, well a ltitle. I was still so scared for my little guy. I just cried when I saw him after surgery cause there was nothing that I could do for him. The nurse in PICU told me that I needed to take a break and that he was going to be fine but I wouldnt. Thankfully my mom stayed that night with us so she came in teh room with him so i could go rest a little. I felt so sick that night cause I didnt eat and had myself so nervous and scared all day long. I felt awfu leavingmy daughter that had just turned 2 before Coltyn was born and NEVER stayed a night away from until Coltyn was born then to throw this on top of it was just horrible, but we made it and Coltyn is doing amazing. I am soooooo happy that he is doing so well. I thank god EVERY day for giving him to me and giving me the strength to get through this. It has truely made our family stronger and appreciate things way more then we did. We go back to see the surgeon and the GI docs on Tuesday, March 20, 2012. I am sooo nervous that they are going to say that something is wrong just because thinsg have gone so smooth. I will update after the appointments: Gi, Surgeon, Ultrasound, and Bloodwork.
Yay for Coltyn!!!
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