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, August 29, 2012

Update

I just wanted to let you know how things have been going for Coltyn.  Each month this summer he seesms to get sick with something.  May he had cholangitis, June he had hand foot and mouth, July he had something that was making him vomit for a few weeks on and off, then August he had a nast nsaty virus for a week that caused him to not eat and be very very fussy.  HE never got really congested just a high fever for 3 days and uncomfortable. I took him to the ped and she said that she thought it was a virus and to wait and see what he did by mid week.  So we did just that and his fever finally broke but then he was up all night screaming and screamed the next morning so I took him back and she said she felt it was still just a virus but would feel more comfotable if we took him to Childrens and have him looked at and make sure we arent over looking something.  So I called and spoke to his liver doc and she said bring him down and that we were going to be admitted.  So we went down and had labs done and IV fluids which seemed to help him alot.  WHile we were waiting on the labs the liver doc came down and looked at him and siad that she was comfortable if he quit his screaming stuff and if labs were stable for him she was willing to let us go home.  SO Coltyn did cooperate and his labs came back alright and he quit screaming and started acting more like himself.  His labs did show that he was a little dehydrated so tha extra fluids did help him out.  HE wasnt to happy that they placed the IV in his hand.  LOL Every other time he has had an IV was placed in his feet, but this time they decided to do his hand as he is walking now and they dont like to place them there when walking unless that is the only place they can get.  HE was trying to take the dressing off by pulling at it and then he tried to bit it off and then he tried hitting things with it to see if that would work.  It was pretty commical to watch, but he really wasnt to mad about it just tyring to see what he could do I guess.  While he was sick here in August he lost everything that we have worked so hard for him to gain!! HE lost 10 ounces in a weeks time.  He was 19.10 pounds and 30 incehs tall on August 3, but was down to 19 even on August 17. HE seems to have made a turn and has been doing much better the last week or so. He was eating GREAT but for some reason he has decided that he isnt to much of eating again.  I am keeping my fingers and toes crossed that Coltyn cooperates and keeps up the good work so we are able to go on our vacation this year on the 15 of September. We are planning on heading to Pensacola Florida for a week!!! We are all very much looking forward to this.  I am in need of a few days off and time with my kiddos and hubby and my parents!!! We will be driving so I am hoping the kids do well in teh car.  When we get back Coltyn has an appointment with the surgeon and liver doc to see how he is doing and MAYBE taking him off the antibiotic again? I am a litlte nervous if we do as he has had such a rough sumemr I am not sure how winter is going to go for him?! o-well we just take it a day at a time and then go from there.  I will post antoher update when we have one.  Until then I hope everyone has a wonderful and safe Labor day weekend!!!!