August 20th - GI follow-up, bloodwork, etc.

I'll start with the good - Mario weighs just over 6 kilos/13lbs now and is slowly moving from 10th percentile up toward 20's on the growth chart. He continues to smile and laugh, etc. Unfortunately, his bilirubin levels went up again. We had hoped that would continue to get lower (toward zero is our goal) from the 1.9 it was last month...today it was 4.8. This is by no means off the charts, but headed in the wrong direction. Our GI has ordered the HIDA scan and I'm waiting for the radiology folks at the hospital to call me back with the appt schedule. This will help determine how good his bile flow is. I have all of Mario's lab results from the last 3 visits and I'm studying up on all the liver function stuff in the reports, trying to find some numbers that might be pointing in the right direction... wish me luck :) He also increased Mario's dosage of Ursodiol...hopefully this bile acid medication will help things along. The HIDA scan results will determine our next move, but today was the first day that Dr. Christie mentioned meeting with the transplant team at Children's. I KNEW this was a possibility from all the reading I've done (most Kasai kids end up needing a transplant eventually - only a handful have made it to their 20's without) but the reality of having the doctor say it outloud was still hard to hear today. Please continue to send your positive energy and prayers to Mario. Our love...Phoebe and fam