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.

Wednesday, June 6, 2012

Update on the cholangitis

Well since the last post Coltyn got hand foot mouth which is a virus and they cant traet it with anything.  All they recommend is Tylenol for the discomfort which they said he couldnt have becasue of his liver being unhappy at the moment.  The GI doc's nurse called me on Monday and said to stop taking the Cipro and start the bactrim.  Bactrim was what he was on for the first 6 months post kasai and that we didnt need to repeat labs until June 19 when he is scheduled for his follow up testing and appointments.  If he gets fever, jaundice, or other symptoms that we know to watch for to bring him in to the hospital as he has the cholangitis back.  So we are waiting to see if things go our way.  I told him when I gave him his bactrim yesterday that he isnt aloud to get sick becuase it is daddy's 30th b-day on Saturday and he was in the hospital last year on his b-day and fathers day so he needs to be good and stay healthy so we can celebrate daddys b-day and fathers day AT HOME this year!!!! GI doc isnt to worried about labs beacuse she said things take a while to get back to NORMAL after cholangitis so we are just holding our breathe that things will get better and that we wont have anything major go on and he will be good to go again.  He ALMOST made it to a year without any problems!!! June 15 will be 1 year post kasai!!!! My how I remember that AWFUL AWFUl day like it was yesterday!!! I am just so happy that I have him here with us and that he is doing as well as he is.  Oh yes and to top it off Coltyn learned how to CRAWL!!!!!!! It only took 13 months but he is officially a crawler!!!!! So proud of my sweet miracel baby boy!!!!!!!!!! Will update with any news when there is some to report. Thanks for the prayers and thoughts!!!
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