There’s a lot going on and a lot to digest. Who would care to hear it in another list form? Me!
- 1. Q’s recovery is very stable and she’s doing well. This picture of her is from today at Kaiser’s infusion center. She’s spending the week getting caught up in school, luckily with a reprieve from SAND Preschool. Her school and advisors have been terrific. She’s registered for classes for next semester. Go Q!
- 2. Unfortunately Kaiser isn’t approving her evaluation at Children’s Healthcare of Atlanta and is making her age up to Emory Transplant Center to the Fully Adult Humans beginning with the liver team. CHOA docs are still recommending she get a liver/kidney at the same time but it all still has to be approved at Emory then presented to Kaiser Permanente Thrive, then approved. So, you know, if you were worried you’d miss something, you won’t because it’s a process. We could have appealed it, but as I explained to nearly everyone involved since we found out Friday afternoon (including kidney and liver coordinators at Kaiser), we don’t want to prolong her suffering so up to Emory we go. We’re disappointed this is just a swift move instead of the slow transition to adult transplant care that others enjoy. It’s not a move we think is completely best for her, but here we are. Sometimes it’s just tirage around here. It’s not ideal, but we are Team End Q’s Suffering, so we are moving. In what can only be described as miraculous, there is an opening on Monday with the liver evaluation team and so Q got in. I signed paperwork today to get her records sent across the street and that is the end of an era. My feelings about us being abruptly pulled out of CHOA after over 20 years are seriously conflicted. So grateful to them for keeping our kids alive and well. Still and always grateful for the years of life Q has enjoyed with Cheryl‘s kidney…
- 3. I was leaving the dentist downtown and came across this painted name of our first kidney donor, Jody Dyal Sauls. Of course, I sent it to her immediately. We both noted it’s near a porta-potty. I feel like that being in the shot really added to the composition, right?
- 4. Q and I had a nice time a CHOA’s holiday lights event… super fun on Sunday. At the time, we didn’t know it’d be a last hurrah, but there you go (insert sad face).
- 5. At a commercial break, enjoy the sunrise over Lake Sinclair.
- 6. Just to keep it real, please note the most tired picture of any human ever. I’m posting it because this is life. This is certainly life in the hospital.
- 7. The liver team is evaluating G for a liver transplant but it looks like the first test they wanted – an MRI – is “unremarkable.” Imagine my surprise at that… and that’s good news, well needed and warranted.
