Transplant +9, ICU 4
Day 72
Transplant +9
ICU 4
Okay Tribe, we need our prayer warriors. Shortly after my positive post, things started to go South again. If you recall, Tate reacts to Ketamine. However, it’s the only med that still seems to take the edge off pain. She used to be able to tolerate 10 day infusions. The timeframe has become shorter and shorter and she’s able to tolerate only a lower dose. Midway through ablation/prep week we put her on ketamine and she had the worst reaction we’ve seen yet. Traumatically awful for all, including her nurse. I said never again.
Yesterday brought a bit of desperation. We knew it wouldn’t work for long but were hoping to give her relief even for a couple days. Not 24 hours after starting it, Tate reacted.
That’s it. We’ve exhausted plan A, plan B and plan C. We’re now onto desperation on our part and lots of discussion on behalf of pain team, PICU team and BMT team. To go up even 0.1 on the sedation med is what they usually use on intubated kids. Further sedation and intubation is an option. Just not a place we wanted to go. Lots of risks especially for infection and just feels scary and extreme.
Tate received both a platelet and blood transfusion this morning. They’re adding lasix again as she’s retaining fluid. Lidocaine will be shut off this afternoon and then we’re exactly where we were when we came down. Bring on the prayers warriors. We need direction and solutions and peace. And ultimately we need Tate’s pain to just calm down so none of this is even in question.