The last several days have been very difficult, but things are looking up. Daley Family posts are here, here, and here. Highlights:

  • The night of February 29 was so rough they almost sent Grace to the ICU. At 2:00 a.m., Heather called her sister in Switzerland for emergency prayers. Turns out that there is at least one advantage to having family six time zones away, where it was a more reasonable 8 eight o'clock in the morning.
  • The team decided to increase Grace's oxygen supply, after which her breathing improved, and they cancelled the ICU plans. However, as it turned out, the nurse had actually turned the wrong valve. I don't know the details, but I think there are two oxygen supplies and she didn't notice that the tube had been moved from one to the other? Something like that. It's nice to know that sometimes (maybe frequently!) the grace of God covers our mistakes.
  • Ultrasounds made it clear that Grace does have VOD (veno-occlusive disease) in her liver. It is not uncommon in her situation, and since the transplant she has been on three separate drugs to help prevent it. Don't bother to look it up; it's too scary. But they expect her body to be able to heal itself with time.
  • They put a drain in her abdomen and have removed a considerable amount of fluid, which has helped.
  • Grace moved to a new room, which has to happen every 30 days for a thorough cleaning, and the new room is even nicer than the first one!
  • Despite her looking like such a sick and miserable girl, and spending much of her time sleeping, there was good news: on March first Grace's ANC was 700, which completed her third day of ANC over 500: Engraftment is now official. From the Be the Match bone marrow donation site, "Engraftment means your new cells are working properly and starting to rebuild your immune system. Engraftment marks the start of your recovery process. White blood cells are the first cells to engraft, followed by red blood cells and platelets."
  • Today (March 3) was a much more encouraging update. They are still draining fluid, but apparently all is going in the right direction. Things are less swollen, and she is breathing better.
  • They restarted giving her nutrition through the NG tube, which is good news. She began sitting up again, and talking. She even asked for food; she didn't eat it, but that's still a move in the right direction.
  • The doctors are happy with her progress.
  • Today her ANC was 1200! I don't know what they're aiming for, but I read that for a child 1500 is considered normal.
Posted by sursumcorda on Sunday, March 3, 2024 at 6:35 pm | Edit
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