About Me

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.

Friday, June 15, 2012

1 Year Post Kasai

Today Coltyn is 1 year post kasai!!! I am so happy that he has made it a year without a transplant and that he has done so well this first year. At this time last year we were walking down to the PICU to see out sweet little guy.  It has been a GREAT year with him in our lives. I still remember that day like it was yesterday.  I am so thankful for the doctors and staff at St. Louis Childrens Hospital that took GREAT care of him and still take GREAT care of him when we have to be in the hospital for anything. I remember the most crying most of this day last year as I had to hand my little 6 week old over to doctors to do a major (5 hour) surgery on to hopefully by him time before transplant.  Even though Coltyn is having issues now he has made it a year without anything major and we will get through this as well. I LOVE to see him smile and LOVE his little laugh as well.  He truly amazes me each and everyday!!! He goes next week Tuesday for a check-up with is liver docs and surgeon so we will see what our plan is from there.  I am hoping for good news but I have a feeling things arent going my way as he is having pale pale stool which means bile isnt flowing like it should, but we will burn that bridge when we get there.  I will take him at least being out of teh hospital to celebrate his daddy's 30th birthday and fathers day this year as last year we were in the hospital for both. So I will update with Tuesdays informastion once I know something. 
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