April 23, 2026
Days 35 & 36
Yesterday morning the 2nd ketamine infusion was turned off. Tate did alright until last night. Pain woke her regularly and she woke not feeling great. She slept a good portion of the day and struggled to stay awake for conversations.
We’ve gone in circles with the pain plan as it doesn’t seem the methadone is doing what we hoped. It’ll take a couple more days for the latest increase to come up to full effect, so we’re hanging onto that. Tates opioid burden is getting high again, so in order to increase the methadone again, she’d need to be off the dilaudid. But she’s just not getting enough relief yet to get there.
We are going to go back to using her PTM for self boluses on her Implanted pain pump. She will have a higher basal rate and can also use the boluses as a rescue.
There was lots of discussion the past two days on her using oral ketamine with hospice, but that option fell off the table today too for various reasons. The biggest one being we need to reserve something to use for the inevitable pain crises.
Today was defeating as all the home plans were squashed. Tomorrow is a new day with new mercies.
A little throwback photo to when Tate and her nurse tap danced during one of her IVIG infusion days as an almost 10 year old. She’s been doing this a long time!