May 28, 2026
Day 3
The adult world isn’t set up to accommodate moms. There’s a little chair that reclined to sleep on the first night, so last night and tonight, I am home to sleep. Keira didn’t have a great night last night. Being home instead of there feels wrong in so many ways. She has had the same wonderful night nurse for the 3rd night in a row. That helps.
Keira actually seemed much worse today in many ways. She battled nausea and pain all day long. Her heart rate went from 40’s to 140’s and up to high 160’s even while sleeping. She’s on high dose iv steroids and continual fluids now. Her HR will come down for a bit after steroids, then climbs right back up. Her cortisol was significantly lower yet today and she failed the “stim test,” but not in a diagnostically obvious way. Everyone is still trying to figure this all out. What we do know is she needs daily steroids to survive. The full “why” is still unknown.
The main hormone and antibody tests are still pending. Her thyroid is now being looked at too and she may land on a pituitary study through another brain mri and potentially a scan of her adrenal glands. A small cyst was found on her pituitary on the MRI yesterday-a version of MRI that shouldn’t have seen it. So we aren’t sure yet if it’s significant. Keira also now has some rhythm issues with her heart that they are thinking are medication related. She’s in the CCU (cardiac care unit) on full telemetry so she’s being closely watched.
Despite a lot of effort today, it didn’t feel like we made much improvement in how keira is feeling or stabilizing her vitals. Pray for sleep tonight for Keira. The last two nights have been essentially sleepless. We need labs to come back tomorrow to keep things moving forward to get Keira feeling better. Thank you for all the prayers.