April 14, 2026
Day 27
Today was exhausting! It was filled with all kinds of things…fun, sweet, sad, concerning, etc.
Tate had a long, difficult night last night with pain and slept very little. We had one of our amazing night nurses, Molly, who makes it all so much better for Tate. So grateful that even on the bad nights I don’t have to worry.
We had a couple really fun highlights today. Tate had art therapy with fun Erin and her new PT stopped by. Tate’s GI Dr. Gumer came by for a social visit. She feels like family at this point and we love her. We had nurse Rachel which always comes with lots of giggles.
And, Tate participated in a collab study with palliative and Abe from gaming. Abe is a genius and created a brain mapping program as a legacy project for kids who are in palliative/hospice. Tate happened to be the first “kid” in the study. An EEG is placed and the patient is prompted to think of a specific memory or thought. The computer maps the brainwaves into a color coded 3D image. It’s then 3D printed for the family. It’s hard to put it into words, but it was highly emotional to think you can hold a happy memory or life dream of your beloved child in your hands. Especially should that child not be with you any longer or is non verbal. This program will be a remarkable gift to so many families. We are honored to be part of it.
Tate had a scare with her IT pump today. Her pump was being finicky with a refill and there was concern that some of the medication leaked outside of the pump reservoir. This can actually be life threatening and Tate was on close watch for several hours. Rescue meds were brought to bedside, there was talk of a rapid response and ICU transfer for closer monitoring, a million people were called and toxicology from outside of the hospital was brought in. If she hadn’t already been inpatient, she would’ve been admitted for monitoring. It turned out fine and Tate did great. She was in safe hands the entire time.
Ketamine was started tonight for pain. It’s a 3 day, continuous infusion. Tate has had this many times and has reacted many times. For that reason, she typically refuses to try it again. It’s scary. But she didn’t fight it which spoke volumes about where she’s at pain wise. She had ketamine last winter with a cautious rate schedule and did fine. We expect this will be as well.
Tate also started methadone tonight. This really is the last “long term” pain option left. We are praying for good results and a seamless transition off the dilaudid onto this for better home management. Tomorrow we will start cutting the dilaudid.