Jaisal had labs drawn last week. Things are holding steady, but for his bilirubin, which jumped quite a bit. This means his body will have an even harder time absorbing fats and vitamins, even though he is fed primarily high calorie formula with special fats. I can't tell you how much we look forward to the post-transplant phase where Jaisal will gain weight more easily and maybe even get some chub on his arms and legs. Seriously, the thought makes me positively giddy.
We also met with Jaisal's surgeon on Friday. Kirk and I thought a face-to-face meeting was a good idea, since we'd recently had a series of miscommunications with the team. Imagine a game of telephone where the message starts at the doctors, goes through a few nurses, and then gets to us. What we heard usually wasn't exactly what the doctors had said. It was time to get to the source of some of those messages.
The meeting went very well and we got answers to quite a few of our questions. We talked through some surgical options, got to look over Jaisal's CT (how anyone can read those images is beyond me), and learned that the surgeon thinks Jaisal has an "ugly liver" that needs to come out.
We also learned that Jaisal had 3 offers for a liver last week, one as a primary and two as back-up. Children's turned down the primary offer due to poor quality of the liver. The two other livers were accepted by the primary recipients, so Jaisal wasn't able to fulfill his back-up potential. (I viewed this as further proof that trickle down theories just don't work.)
We're still hopeful that the right cadaver liver comes along for Jaisal before we go the living donor route.
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