December 15, 2023
1 Year +293
Yesterday wasn’t a great day. Tate slept most of it. She was awake for just a few hours and just wasn’t herself. Tate has had neuro involvement from the very beginning…..since 2015. She was 8 when it first started. It has been the trickier aspect of her diseases as Science doesn’t have all the tools to test, identify and thus, treat. IVIG was the miracle treatment for Tate for years. This was stopped in October which fits our timeline for decline. We’re working towards restarting. In the meantime, infection and illness always seem to ruffle everything up. Nowhere near the degree that was present pre-transplant, but still really difficult to see and experience for her and us.
Yesterday they moved her vancomycin antibiotic to continual. She gets it nonstop day in and out. The goal is to clear that central line and see her labs start shifting positively. The tpn/lipids ran straight for 24 hours too. We’ll move to 10 hrs/day today.
Infectious disease is still waiting on tests for the fungal infection. But we’re all starting to breathe a little easier with what has come back so far. They want to be certain it’s a true positive before treating as it would mean stopping several of her daily meds as they don’t play nicely together. Currently though the scale is tipping towards a false positive.