Fattening Boy

Marquesa took Charlie in for another follow-up appointment last Thursday. At the appointment they check the usual things (for Charlie). They checked his billy levels as well as a variety of other things including weight. The good news has several facets. Charlies' billy counts are down to almost normal levels. His billy count is down to 1.5 now. A normal count is below one, so we have definetely seen some great improvement.


The other exciting news is how much he's growing. Charlie now weighs 10 3/4 pounds. He's trying to catch up the fatness that is his twin sister. He still has a ways to catch up if he wants to match fat head's (Hailey's) weight.

Before and after pictures

Before and after the Kasai. What a difference in color...
Before:

And after:

Great news!!

With all the research Nick and I have done about the Kasai procedure, we learned this about the success rates. With 1/3 the surgery works and kids never need a transplant, with another 1/3 the surgery works but only temporarily and kids will need a transplant later down the road, usually well after a year or so, and finally the last 1/3 the Kasai does not work and a transplant is needed within one year. Dr. Book said at Primary Chilren’s the success rate is actually around 80% rather than 2/3, which is wonderful! However, because biliary atresia is a progressive and chronic disease, some of those 80% will still end up needing a transplant. There is just not enough research done yet to say any specifics of how many and when.

I went in for Charlie’s appointment with Dr. Book in the liver clinic. I hadn’t had the chance to meet her yet, but I had heard wonderful things from other parents. After looking at Charlie’s labs and hearing that his stools were yellow/green, she said that Charlie’s surgery has worked!! His bilirubin when we first went into the hospital was around 8. Now it is down to 2.2! Also, his conjugated bilirubin is 0.2, within normal limits! His liver seems to be flushing out the excess bile quite nicely. Nick and I are so happy! We have been so blessed to have the support and prayers from family and friends. Thank you all so much!

Awaiting Thursday's doctor appointment

Sorry it's been so long since I have posted...We've been super busy. Charlie is doing great. He is still looking slightly yellow, but the whites of his eyes are much whiter and his stools are looking like they should:) He has also been able to spend some time with his sisters! He has loved that, however it does wear him out quicker. We have an appointment with the liver clinic at Primary Children's on Thursday. Hopefully, they will be able to have a few answers for us. Cross your fingers that he is in the lucky top 1/3 that don't need a liver transplant.

I know we have been posting mostly only pictures of Charlie, but we are in the process of getting a family website. When that is done, I promise we will have tons of pics of all the kids!

We are finally home!!

Yeah! Charlie got discharged from the hopsital late this afternoon. He will continue to be on IV antibiotics for a few weeks. A home health nurse stopped by and gave us a crash course on PICC lines and IV therapy. It sure brought back all the nursing skills that I hadn't used in years.

He is doing pretty good. Still looks a little yellow, but is improving every day. We have our next doctor appointments in 2 weeks. At that time he'll get labs done as well which should tell us if his liver is excreting any bile.

Maybe coming home today!

We are crossing our fingers that today Charlie can come home. He is no longer recieving TPN and is taking his bottles great. He will probably be on a special formula called Pregestimil for quite a while. His labs although still nowhere near normal are headed in the right direction. The nurses have been kept busy by Charlie always wanting to be held:) He's definately a momma's boy!

Here are some pics over the last few days. Rough to realize how much this little man has gone through.

Grandma's lucky day

Yeah!! Today was definately a day of progress. This morning I saw his first smile since surgery! Also, we are finally able to try feeding Charlie. He took 1 ounce at around 3pm and is so far doing great with it. And since she was the one at the hospital at the time, Grandma Roberts got to be the first one to feed him, so she was pretty happy about that. Especially since he rewarded her with lots of smiles!

Yet another day at Primary Childrens

At around noon today, Charlie was transfered from the PICU to the infant floor. He has been recieving TPN (total parenteral nutrition) through his PICC line. A PICC line is like a heavy duty IV line. TPN can give Charlie the nutrition he needs until his digestive system is ready to handle formula.
His bilirubin count is down significantly today but we were told to not get too excited because what counts is long term lab results, not the day to day ones.