11.24.21 Trach Floor 29

In a holding pattern. We kept Aimee at a lower rate today. She was still uncomfortable, but not as bad. Her belly has gone down with the decrease by several centimeters. I spoke with the GI team and we discussed trying gabapentin in full doses. It can help some kids that have feeding issues due to nerve pain. Otherwise, they are simply not sure what answers to give us. 

We have some difficult decisions ahead. I spent awhile processing with Palliative care. It is hard to consider letting go of feeding Aimee real food after we have fought hard for it many times. Yet, no matter what, we still did feed her well for many years. And our goal is now to get her comfortable and have more happy times at home, however that looks. 

I hope you have a happy and peaceful thanksgiving. Aimee and I will be listening to holiday music and practicing watercolor painting. It sounds like room service will have a Thanksgiving meal available for purchase too. Happy holiday season friends.