March 24, 2026
Day 6:
Tate got through her procedures just fine today….4 joints injected, a spinal tap and her GJ fixed and replaced. Once into the procedure, they realized they didn’t have the right sized GJ for Tate, so landed on one with an adjustable length. This means she has a long tube hanging out from her stoma site instead of the more low profile button. This was unexpected and very upsetting to Tate. She’s never liked her medical paraphernalia hanging out. This will hopefully be very temporary for her. She has so much on her body already, this shift was deflating today.
New team started today (always on Tuesday) with a new fire and direction to figure some things out. Tates vessels are doing a very poor job keeping fluids where they belong and instead they’re all hanging out in her tissues. This just continues to get worse and is not only hard on Tate’s self esteem, but hard on her body too. The team wants to figure this out. Tate had some extra labs and another echocardiogram today. Even if things aren’t able to be fixed, just knowing the definitive why would be helpful emotionally.
Early results of her spinal tap are showing inflammation in her CNS. We aren’t surprised by this, but we ARE praying so hard this gives a direction towards a better treatment to reduce that inflammation. Lots more labs to come back yet for all this.
Tonight’s day shift ended with a sweet chat with some of our favorite faces while Tate snoozed right next to us. The love and care carries us everyday.