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.

Thursday, October 10, 2013

Check-up Time

So all has been going pretty well for Coltyn. He did get a little viral illness here and there but all in all we had an uneventful summer and NO hospital stays!!!!!! That is the first time that has happened since he was born.  So we were pretty thrilled with it.  So on October 8 Coltyn had a check-up with is surgeon and liver/GI specialist.  Prior to the appointment he had to have labs and ultrasound done, which he HATES!!! Actually this time he started crying when we pulled into the parking garage to the hospital.  He said he didnt want to go there because they hurt him.  IF that doesnt break your heart I dont know what will.  But we kept reassuring him that things would be fine and that it was to check his tummy out.  So we got to ultrasound and he was still not happy that we were at the hospital, but he looked around a little and calmed down.  I did request Child Life to be in there with us to see if that would help anything or not, as last time he screamed so much that they couldnt get the full ultrasound.  Coltyn screamed for about 10 minutes and fought us until he finally listened to me and calmed down enough for me to talk to him.  I explained to him if he would just lay back on daddy that things would go alot quicker and to looka t what she was doing because it didnt hurt at all, if anything it should tickle.  So he did calm down with the help of Child Life and we were able to get the full ultrasound this time. YAY!!! After we completed the ultrasound we proceeded to get his labs drawn.  He kept running out of the waiting room because he didnt like being in there as he knew what was going to happen.  When they called his name all he kept saying was no I dont want to.  Once in the room he did nothing but scream and try to get out, but the lab tech was super quick and got us through and done while he screamed the whole time.  She did say that he was a very very strong little guy!! LOL So after we had labs drawn we still had 2.5 hours until it was time to see the docs so we took the kids to the zoo as it is only 5 minutes from the hospital.  That seemed to brighten his mood a little.  So we saw a few animals and then they got to ride the carousal.  Then it was time to head back for the doc appointments.  He wasnt to happy to be back at the hospital once again but it wasnt as bad as the first time because we got to tell him that he didnt have to get any more owies and that they were just going to feel his tummy and talk to us.  The surgeon was the first one to visit us and he said that everything looked good and the things were flowing like they were suppose to and that he was happy with how his ultrasound and labs looked. Which was GREAT news.  Then The liver/GI doc came in and the first words out of his mouth was "Did Coltyn really gain 4 pounds in 6 months?" LOL  I said I guess that is what your scale it telling us.  She was very very pleased with that as he went from the 1% to the 15 %!!!!  She asked what we were doing and I said well we are doing what you told us to do last time, let him eat anything and everything that he wants.  She sad keep doing that because it is working.  He also grew an inch in 6 months as well. So all in all GREAT news for a check up. We did discuss trying to take him off his antibiotic again, but she said she really didnt want to see him in the hospital over the holidays so she said we should stop it at the beginning of the year and then follow up in April with her and the surgeon.  We also started giving him probiotics to see if that can possibly help with is random vomiting..  We discussed what we will do the next time that he starts his vomiting.  The game plan is to do labs and ultrasound to see what those look like and if they see a blockage then he will have an upper GI done to get a better look.  They are thinking that it could be a small piece of scar tissue that gets in the way and then it gets out of the way.  If this is the case the only thing that they can do is surgery to remove the scar tissues so then we are back to square one, is it causing him to much trouble or are we better off letting it go and not putting him through another surgery?  So all in all he had a GREAT appointment and we dont have to go back for another 6 months!!!!! YAY!!!!!

No comments:

Post a Comment