2 Years Post Kasai

WOW it is hard to believe that is has been 2 years since Cotlyn had his life saving surgery.  We are so very grateful of the doctors and nurses at St. Louis Children's Hospital.  Because of them Coltyn is still here with us and doing well.  I can remember that day like it was yesterday.  It was so incredibly hard to hand my 6 weeks old over to strangers for a MAJOR surgery.  Without this surgery Coltyn wouldnt still be here today. The staff as the hospital made it a little easier to swallow what was happening to my little boy that day and the days to come.  We are so blessed that Cotlyn has responded like he has with the kasai and is doing well without transplant.  I know that day will eventually come but for now we are just enjoying every minute of him being healthy and able to be a toddler.  Thanks for all the support and for being there with us on this journey.

Coltyn has been doing well since his last hospital stay in March.  He is still on antibiotics and will continue on them until October when we go back to liver doc.

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!!!!!!

Hospital Stay- March 26-27, 2013

Well we had to take Coltyn into Children's on the 26 as he started vomiting at the sitters and the ped wanted to see him to check him out.  HE got sick on the way home from sitters and then a few times at home and then again on the way to the ped and once at the ped and then again on teh way home from the ped.  Poor kiddo couldnt even keep water down.  He hasnt been around anyone thet we knew of with the stomcah flu so the ped wanted him to get checked out at Childrens since vomiting like this could mean other thinsg with his condition.  So we got everything ready and things organized for Kendyl and headed down to Children's.  On the way down he got sick a few more times and then finally fell asleep, but you could still tell her didnt feel very good at all.  Once we got there they took labs to check his liver and then they also did an x-ray as with is major abdonimal surgery he could have an obstruction from teh scar tissue.  The x-ray did show that he had a little back-up but they were not to worried since he had pooped earlier in the day.  His labs showed that his liver was good and that shouldnt be the problem, but the labs also showed that he was dehydrated and they decided that it would be BEST if we stayed the night to monitor him and get him some IV fluids so try to rehydrate him. So we were admitted and once we were on the floor they decided to do an ultrasound as Coltyn is Coltyn and doesnt follow the norm with cholangitis. AS in January his labs were perfect but his liver was inflamed and his ducts were dialated which means he probably had the start of cholangits.  So we had the ultrasound done on the 27th to make sure things were happy and they were for the most part.  HIs liver was a little inflamed but no other issues.  So that was a good thing.  They decided to let him try to eat and drink and see what happened and said if he kept that down then they would let us go hom that evening.  Well Coltyn did very well and kept everything down so we could go home.  Thank goodness that was a SHORT hopital stay as those are hard on a person.  Since being home he has been getting back to himself for the most part.  He does have a cold right now, but he seems to ALWAYS be sick with something.  We did have to follow up with the ped on 4/1 and she said that everything felt great and that he looked good too.  So if everything goes as planned we should be doctor FREE until the 23rd of this month-April.  He goes back to see liver doc, surgeon, have labs, ultrasound, and then his 2 year evaluation all done on the 23rd at Childrens.  Thanks for all the paryers and thoughts for my sweet little guy.   

We did have a GREAT Easter as well!!! It was a rough week leading up to it as Coltyn was in hospital and then I was in hospital as well, but we were BOTH at home and had a nice time with family.  I have included a few pics from Easter of Coltyn and his big sis!!!

Follow Up from Hospital Stay

Ok so we took Coltyn back to the liver doc on January 23, 2013 for a follow up form his hospital stay to and to see if his bile ducts went back to normal.  It was rough getting his ultrasound done as he HATES them, but we did and everything went back to normal.  THANK GOD!!! So we are back on the daily antibiotic to try to prevetn this from happening again.  We will go back to the liver doc on April 23, 2013 to see how things are going and MAYBE try once again to go off the antibiotic.It seems that everytime we go off the antibiotic he gets cholangitis within a few months of stopping. So we will see how he does between now and then and then decide at that point.  As of today I had to take him back to the ped because he has croup.  THe poor kid cant catch a break.  There are several little kiddos in a group called LiveR on facebook that need some extra prayers as there has been alot of kiddos in the hospital with complications resulting in this crappy liver disease.  It is a never ending circle.  Even once transplanted it still has its bumps in the road.  So that is all that I have for now. 

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.

Last update for 2012

Coltyn has been doing pretty well.  He has had alot of viruses but we are still trucking away. He recently made it up to 21 pounds but is now back down to 20.  I am guessing it is from being sick with the viruses? He has had a few more episodes of vomiting the last few months but nothing major at all.  HE did it 3 tiems in November and not at all here in December, well besides the stomach flu he had.  GI is fine with letting it go for now as long as its not green or bile and its just once a day. Other then that Coltyn is doing really well.  HE is talking up a storm and repeating EVERYTHING you say.  So we have to really watch what we say as he repeats and or says it when he shouldnt. LOL HE did go off his antibiotic November 20, 2012 so we are hoping he doesnt get cholangitis again!!!!! Last time we went off he got cholangitis about 3-4 months of being off of it.  But we will see what happens this time. He is doing well so far so we are hopeful it continues and he can stay off the antibiotics. Coltyn is still very small for his age, but we are ok with that as long as he keeps gaining weight and gorwing we are good to go!!! He may be small but he sure is a tough cookie.  He amazes me each and everyday!! I thank god for him as he has tought me so much.  I still am having a hard time with him turning 2 in April :( Where has the time gone?! I mean really??? He has been through so much in his little life and I am so glad he is doing well and we have been able to cut back on his blood draws and doc visits!!! He will go back March 26,2013!!! Hoping he gains between now and then. Thanks everyone for all your thoughts and prayers!!!! The quote I LIVE by is:

YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS YOUR ONLY OPTION!!!!!!

Update:

Well there really hasnt been to much going on this month.  Coltyn has been doing pretty well.  The BIG news this month is that he FINALLY hit the 20 pound mark!!!! This is a huge accomplishment for a child with Biliary Atresia as your liver does alot of absorbing for you body that allows u to grow and gain weight. He is still very small for is age, but we are still growing, just on our own curve as they call it. We will take that though.  HE has had some more issues with vomiting the past few weeks, but the liver doc said that she doesnt want to do anything since it is just once a day and it is not bile or green and he is not getting dehydrated.  So we are just going to let Coltyn be Coltyn and let him take charge and see what he does.  Otherwise things have been pretty quiet since we got home from Florida and his last Liver appointment. We will stop taking one of his meds here in November.  He is only on 2 meds right now and one is an antibiotic which he is on due from the last hospital stay and having had cholangitis.  So prayers that things go well for us when we go off them and he DOESNT get cholangitis like we did last time.