January 24, 2026
Day 15
This is the time in an admission that is the hardest. It’s lots of waiting, lots of coordination, quite a bit of advocating and some grieving too. You’d think the idea of going home with the same daily struggles you came in with would get easier or eventually feel routine, but it doesn’t. We will still go home and battle all the same daily stressors; pain, adrenal insufficiency, fighting against infections and bacteremia, blood pressures and dysautonomia migraines, and in general, disease progression. We want to be home. But we’d love to go home with Tate able to live a life free of the above. Instead, that seems to get stripped away more and more, little by little.
This girl is in a daily battle against her own body. I’m so proud of how hard she fights every single day. She walked 3 laps around the unit today and is self weaning the pca with pure grit. She’s on day 2 of IVIG which increases both migraines and chronic pain. She really isn’t feeling very well but tries each day to do a little more. Tomorrow we’ll take another look at her labs and get another chest ct to see if those lung nodules are responding to the two weeks of iv antibiotics so far. Then we’ll run another 7 hours of ivig for day 3.
We’re running out of the “quicker” fixes which means we’ll head home soon to hammer out the rest. That means slower progress, less communication and less coordination. But at some point, it’s a good trade just to be home.