I’ve felt a bit like we’re drowning

Day 47:
Thanking God for no intestinal perforation last night….a constant concern of all her teams.
Last night and today did raise new concerns. Tates battle with pain and zero sleep last night also included severe temperature dysregulation (think freezing with layer upon layer, sweating and a core temp of 96.7) low BP and complete delirium. Talking nonsense, not knowing where she was, nightmares and all in all a miserable night. This continued throughout the day but we added in an inability to stay awake, finish a sentence, fall “asleep“ while sitting, etc. She was not herself until about 2:30 this afternoon when she “woke up” and was more interactive. Throw in pain and morphine and Tate kept everyone on their toes today again. They’re looking at drug interactions, rare side effects, etc. iv rheum meds were held for the second day in a row as a result. Unfortunately, yesterday she had a reaction to a pre med and the infusion had to be held and eventually expired and couldn’t be used….. $5,000 worth. So if they decide to give it another go, there has to be certainty she in a place to tolerate it. She’s back on full monitors as her breathing rate has been low and irregular as well. A second fentanyl patch was added yesterday. It’s helping a smidge, which is more than anything else, so we are praying it’s not the culprit of the new sedative and delirious effects.

I’m feeling grateful that tomorrow is Saturday for a chance to catch our breath, regroup and prepare for another week. I’ve felt a bit like we’re drowning the last few days. I came across this tonight and am grateful for the reminder that we have the ultimate lifeguard. With our eyes on him, we also can walk on water.