We got in yesterday and had labs drawn...first two sticks in over a month.
W was not too thrilled to be without his broviac in that regard.
We met with Dr. Fishman, Julie our transplant nurse, and Stacey our dietician. Can you believe they used the term "scrawny" to describe Weston?! They are pleased with his weight gain and he is still growing well: 26" (50th percentile) and 16.94lbs (a lot attributed to liver)
So the meat and potatoes of our appointment:
•Wes was approved by UNOS for more points, he is now at 24 PELD points (up from 10)
•Bili and INR (clotting time) are up and albumin is down - all expected signs that his liver is failing. Thankfully, nothing is bad enough for hospitalization right now.
•All of his feedings must be supplemented, so no more direct breastfeeding, although I can still pump
•We avoided the dreaded NG tube today-yea!!!
•As I type, we are waiting for an ultrasound of his abdomen to check for any fluid (ascites; also associated with liver failure)
All in all, a good appointment. Hopefully, with the increased points we will get our call soon.
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2 comments:
Photo caption:
You said we were going to Disney World !?!?!?!?!
What a precious, brave boy.
MeeMaw
Dear Lord please be with my family
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