March 29, 2025
Day 58
3/29/25
Thursday and Friday Tate had IVIG again. IVIG can increase pain which led to a longer night last night and a day full of sleep today.
We moved rooms again today. Every 30 days you are required to move. Easier to move on the quieter weekend rather than a busy Monday. You acquire quite a bit after two months. Im super grateful Keira was here today to help. We lost our Mountain View but gained a quieter location away from the treatment room. 8th floor is a mixture of med surg, and the back of the unit is med psych. It’s not always an easy unit to be on. Lots of really hurting teens. Lots of families who need extra prayers.
I had a long conversation last night with Tate’s rheumatologist. More labs tomorrow and lots of discussion around a new treatment that Tate qualifies for now that she’s 18. No other children’s patients on it, but we are glad for another option. Tate’s inflammation markers are up again. Could be infection, blood clots or autoimmune. Most likely autoimmune, IMO.
We’re grateful for one more quiet day tomorrow before the new busy medical week begins again. Every week I’m hopeful it’s the one to get us home.