April 9, 2026
Day 22
Today marked the first day off the buccal (cheek) pain film medication since last years long 3 month admission. Tate despises this medication, so that is a win for her.
However, coming off it is posing some big challenges. Tate was showing respiratory depression this morning at 4 resps/min. She had her resident Dr. sprinting to her room to assess. This is the big concern with coming off this med and balancing the narcotics in her pain pump and also the IV narcotics. We have no way to know when her body will suddenly uptake more of the narcotics. We had to hold pain meds this am which put Tate into another pain crisis. She muscled through, but it was a harder day.
Tonight she spiked her nightly fever x 4 days now and is very tachy with a resting HR in the 130’s and 140’s. They believe the HR is due to the med reduction and the fevers are from her new daily infusion.
Tate has one of our most trusted nurses tonight which makes me okay with the next fun bit…Tate and Keira are having a hospital sleepover and Tim and I are down the hall in a “sleep room.” It looks exactly like a hotel room. And…if you close your eyes, you can imagine you have the window open and are Oceanside as there’s waves of white noise coming out of the ceiling. It’s quite nice! I’ll take a vacation anyway I can get it. Imagination vacations count!
It doesn’t feel like the best night to be away. But between Our nurse Taylor and Keira, I know Tate will be well attended to.