10:11pm
Putting a plan together for Nathaniel’s continued treatment has been difficult The discussions are never easy and the future is never clear. Sometimes, like now, that makes it hard to choose between the options except by arguing it out. Which, as one might guess, is not a particularly fun way to spend one’s time.
The CF team is going to have someone swing by tomorrow to discuss options with us. Is a PEG tube available? What about IVs at home? How do we transition back to Trikafta — or will that option disappear if it affects the liver? You know, light airy conversations.
I boarded the dogs this evening and am sleeping over at the hospital to ensure I’m here when the CF team is. I’m very tired (and Nathaniel is too) but this recliner is the best place I can be to support him.
Saturday I’m heading out to Lancaster to support my mom and my family. If anyone wants to visit Nathaniel, Saturday may be a good day for it.