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, January 16, 2013

Hospital stay 1/9/13-1/11/13

SO Coltyn has been doing so well he had to throw a little curve ball in the picture.  So on Wednesday morning when I dropped Coltyn off at the sitters he was not his usual self, but not awful either.  So around 10:15 I got a call from the sitter saying that she woul feel much better if I came and picked Coltyn up as he wont eat or drink and he just keeps walking around fussying and crying.  So I went and picked him up and we got home around 11:00 and all he did was loy on me and sleep.  That is not at all close to normal for this kid.  So I let him lay there and sleep while I watched TV for a bit.  After about an hour or so he kept waking up saying owie and crying then he would reposition himself and fall bakc to sleep.  So I called my husband and asked him what he thought and he said oh it's just a cold.  SO I let it go until he was more uncomfortable and I then called the ped and made an appointment for Thursday as his normal ped is off on Wednesdays.  SO he still layed there and was sleeping on and off and fussing so I though well it is nice out so lets go for a walk outside and check the mail.  Well usually when we go outside he perks right up and is all about it, well not this time he still just layed there and wouldnt do anything, but whine. So I called my husband again and said we need to take him somewhere today as tehre is something wrong with him.  I tried to touch his tummy to see if I could feel his live rnad all he did was scream and tense up.  So I took him to the other ped we see when oursr is out and she said he had a temp of 102.2 and gave him some tylenol and let that work before examining him.  WHen she examined him he was tender to the touch on the tummy area still.  So she decided to call his liver doc.  They both then decided that it would be best if we got admitted to St. Louis Chiildrens for at leat 48 hours.  So we got eevrything ready and headed down to Childrens. They did a direct admit so we wouldnt have to go through the ER and be exposed to all the nasty germs there. When we got into the room they started IV antibiotics to treat for cholangitis, just in case and then did a nose swab to check for 38 different viruses. The poor kiddo got stuck 2 times before they got an IV in.  They also did a urine sample to check for UTI and blood cultures to check for blood infection and then just his normal labs to see where his liver numbers stood.  His liver labs came back good, his nose swwab came back positive for 2 different viruses, and the cultures all came back negative.  Through the night Wednesday he has fevers up to 103 and seemed very uncomfortable.  By morning he was acting more like himself and didnt seem to be as tender to his belly.  They wanted to do an ultrasound to check his liver out.  So we had that done Thursday morning.  He wasnt happy about that as he is NPO for 6 hour prior.  The first ultrasound they didnt get a single pic as he was screaming and not having it.  So we went back to the room and when they did rounds they said no we need pics of the bile ducts.  So we had to go back down and this time we brought 5 other people with us!! LOL we were determined this time to get the dang pics.  So they did get the pics and found out that there is some ducts in the liver that are dialated and could be causing him some pain? Not sure but could be.  So they treated him for cholangits.  That ws 48 hours on Iv antibiotics (Zyson) then sent us home on Augmentin for 11 days.  We have to follow up in 2 weeks with liver doc and have another ultrasound done to check things out. So for now we are home and he seems to be doing well. We will go back next week Wednesday the 23rd to see if the dialated ducts have gone back to normal after the antibiotics.   Iw ill let you know how it went when we are done.  So for now it is a wait and see what happens kinda thing.