March 26, 2026
Day 8
Tim came today and played some Mario cart with Tate. It was fun to hear the laughs from both of them.
Tate had a bedside eye dilation and exam to ensure there wasn’t increased pressure or inflammation in her eyes as she’s been having some symptoms.
Her cheeks remained fiery all day and she ran another fever this evening. Her GJ is draining some yucky yuck stuff that everyone is keeping an eye on. And she experienced some GI changes today too. Not sure if the fever and above are related.
She lost another IV and got a new one and we tinselfied the vas team that came in.
We are trying to move some of her IV pain meds to oral in order to move towards home and are waiting on the new pain med to (hopefully) work its magic.
Lp labs will likely take another week to all come back and rheum and neuro should have some kind of a direction after that.
And mixed into all of that is lots of pain, some frustration, a bit of sadness, moments of joy, plenty of gratitude and a whole lotta love.