Giving Annaka the best shot at organ transplant


October ended with news that St. Louis Children’s Hospital (SLCH) was no longer comfortable performing Annaka’s liver transplant. This meant a transfer to a larger, more experienced hospital, and thus we were being sent to Pittsburgh.

Using a metaphor that many of you will quickly understand, St. Louis is kind of like the Horace Grant to (CHP) Children’s Hospital of Pittsburg’s Michael Jordan. SLCH is very good, but just as a basketball player might pass instead of taking a shot they aren’t sure they’ll make, Pittsburgh, with a half-century of experience, is one of the crunch-time players in the world of pediatric liver treatment.

Our first priority was to get Annaka listed at Pittsburgh, but to do that she had to be reevaluated by those doctors. Thus, after about a week of trying to schedule the evaluation, on Nov. 14 JaLana and her mom headed East with the very patient patient in tow.

They stayed at a next-door Ronald McDonald House in the evening and went through one meeting after another during the day. For three days they met doctors and other specialists; for three days Annaka was analyzed and studied. They returned to Effingham with the understanding that, although it would take a while to get everything in place, she would indeed be listed for a liver transplant at Pittsburgh in the near future.

What this meant, though, was that Annaka now existed in this liver-status limbo. St. Louis would still care for her up to the transplant and continue to offer her weekly albumin and lasik infusions to minimize the swelling in her belly. It was also understood that about 12 months post-transplant, once Pittsburgh believed she was well-enough and on the mend, Annaka’s care could be transferred back to St. Louis. For much of November, however, she wasn’t listed anywhere, moving from one day to the next without a safety net. For the first time in months, it didn’t matter how many organs became available; it didn’t matter whether we had our bags packed or not. Continue reading