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, February 1, 2013

Follow Up from Hospital Stay

Ok so we took Coltyn back to the liver doc on January 23, 2013 for a follow up form his hospital stay to and to see if his bile ducts went back to normal.  It was rough getting his ultrasound done as he HATES them, but we did and everything went back to normal.  THANK GOD!!! So we are back on the daily antibiotic to try to prevetn this from happening again.  We will go back to the liver doc on April 23, 2013 to see how things are going and MAYBE try once again to go off the antibiotic.It seems that everytime we go off the antibiotic he gets cholangitis within a few months of stopping. So we will see how he does between now and then and then decide at that point.  As of today I had to take him back to the ped because he has croup.  THe poor kid cant catch a break.  There are several little kiddos in a group called LiveR on facebook that need some extra prayers as there has been alot of kiddos in the hospital with complications resulting in this crappy liver disease.  It is a never ending circle.  Even once transplanted it still has its bumps in the road.  So that is all that I have for now. 
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