Year 2011 Overview

Yet another fun thing at Primary Children's hospital.  Actual size Spider-Man statue.  Not to be confused with Phil Spiderman.

Charlie was lucky enough this year to only have two hospitals stays. Both were for cholangitis and needed IV antibiotic treatment at home. So, he had to get PICC line # 5 and 6 in :( He took it great though. I am so proud of him.  This was the first time where Charlie finally realized how good he has it at Primary Children's.  He has room service with any food you can imagine, unlimited toys and shows, and one on one time with his parents.  This was the first time he asked to stay at the hospital.

Short hospital stay:)

So, sorry it's taken so long to update. Charlie only had to stay at PCMC for 3 days. Came home with another PICC and just got that out last week. Since then, fever-free and loving the summer weather. Here's a few hospital pics and fun home pics

Late night ice cream treats:)

:)

Loving the sandbox

 Hmmm...Maybe a doctor  some day?

 Lots and lots and lots of TV while in the hospital

Playing footsie with Hailey

Getting his PICC line out. Took it like a champ:)

In the hospital again:(

So, we had attempted once again to get Charlie off his antibiotics. And once again, he spiked a fever. And after his labs came back a little elevated, his doctors thought it would be best to start him on Zosyn again. We'll be here at Primary Children's for at least a couple days, then home with another PICC line. In the meantime, we will try to find out what is causing the infection.

Post more tomorrow...

Updates...

I figured it's seriously time to update this blog. It really has been a while. Luckily, not much has happened with Charlie. A few months back we got the go ahead to take him off his antibiotics. But, about 2 weeks after that he got a fever so we put him back on them. Fortunately, his labs were good and no cholangitis. Then mid April we tried again to take him off the antibiotic but after missing only 2 doses he started getting sick but no fever. And, as luck would have it, I was in the hospital in labor at the time:) So, even though he didn't have a fever, we started him up on the septra again. Turns out, it was just a normal cold that all the other kids got as well.
For the time being we're keeping him on both meds for a bit.

Still doing great

Well, I seriously feel like the luckiest mom alive... We have been so blessed to have Charlie so healthy. He had another checkup at the liver clinic and no surprise, he's doing great. We'll get labs done in about a week. Also, he gets to drop one of his medications finally:) So, the only med he'll be on is actigall, which helps with bile flow.

Here's a few cute pics of my boy...

July 25, 2008

Charlie is doing wonderful. We are now at almost a year post-Kasai! Yea! It was the end of August last year that he was diagnosed. Nick and I just want to thank everyone for all the help you've given us. We have been so blessed to have you in our lives...

Nick and I just came in contact with another family whose little girl has biliary atresia. She has just had the Kasai surgery and is back home now. Please remember to keep this family in your prayers.

Here's some of the lastest Charlie pics...

Sorry it's been so long...

Well, Charlie is doing FANTASTIC!!!!! We are soooooo happy! His last appointment with Dr. Book was last month and went wonderful. There is a chance that he may never even need a transplant. Wouldn't that be awesome? Also, his labs looked much better. Liver enzymes were about the same, ALT 51 and AST 94, and vitamin D level was normal at 37. And the most shocking was his ggt level, which had been as high as 2600, is now at 80!

Thanks so much for all the thoughts and prayers!!!! Here is a few latest pics...