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, April 24, 2013

Liver Check-up

Well all in all Coltyn got a GOOD report yesterday from his liver doc and his surgeon.  His labs were good which they usually are, his ultrasound was a little changed but they said they aren't worried about it as it looks like all other kids with Biliary Atresia.  The surgeon felt his liver and said it felt ok to him not great but like other kids with BA.  LOL well I guess that is a good thing since we do know he has BA. The surgeon told me with what the ultrasound shows is normal for these kids and he siad the main focus is that the blood flow is still really good which that is a major thing they look at as they said it can be things progressing but they arent worreid at all as it is nothing major.  Coltyn is still very small but liver doc isnt to worried about that as she said hubby and I arent big people so he may be taking after us.  He is only 23 pounds and 32 inches tall at 2 years old. 3% for weight and 12% for height. She did tell us to keep giving him high calorie foods and that kids like to eat more early on in the day then the evening so if he wants somehting that is high in calories in the morning but not a breakfast food to just give it to him and let him have it.  She said there is nothing that says they have to eat breakfast foods in the morning. So we are gonna just keep pushing the calories to try to get him to gain and grow a little more. The surgeon and liver doc said they both think that we dont need to come back for 6 months!!!! That is AWESOME news.  I was concerned as we havent ever made it 6 months without a doc visit or a hospital stay.  They BOTH seem to think that Coltyn is doing well enough we can try to go 6 months so we are doing just that.  His liver doc did say that we are to stay on the antibiotic the whole time as when we go off he gets cholangitis so she said we will just keep on it and re-evaluate when he comes back in 6 months.  So this means that we are HOPING to have a hospital stay FREE summer.  We havent had this since Coltyn was born.  He has been in the hospital 8 times in just 24 months of life.  So we are hoping and praying that things keep going well and that we can make it 6 months without anything going wrong!!!!! Thanks for all the thoughts and prayers!!!!! I am having such a hard time with Coltyn turning 2 in a week!!!! I dont know where the time has gone other then lots of time in the hospital and doc visits, but he is a fighter and WILL keep FIGTHING!!!!!!

No comments:

Post a Comment