August 29, 2026
I’m grateful for a team that despite their fears for Tate staying home, they trust my judgment in choosing what it best for Tate AND The whole family. A good admission spreads out the responsibility and leads to quicker answers. But last admission has left me a little hesitant to sit in that space again. Plus, we have a family and it’s hard to maintain that when living split in the hospital.
Those compromises to stay home led to yesterday’s outpatient blood cultures….again. It seemed likely I’d get a phone call that they were positive this morning, but 18 hours in and I haven’t. I’m not ready to unpack the bags, but this is becoming a familiar pattern. A positive culture lands us inpatient, but also with a clear path to help Tate feel better.
We’re seeing lots of neuro blips and Tate is definitely sick. Due to the immunosuppression, labs reveal nothing. If the new biologic is the culprit for her picking up virus after virus and not controlling the neuro-we’re not sure if it’s worth it.
Swallowing problems due to continued esophageal swelling combined with nausea means we’re now crushing most meds to put through Tates feeding tube and Friday resulted in a clogged J tube. The G works, but pushing so much through that doesn’t help with the nausea. This next week we’ll have to work on an exchange for a working J tube again. We’re in a spin cycle.