We are in a room on our regular floor admitted for observation of seizures. Since giving Lucy her phenobarbital dose for the night we have not seen any more seizure episodes. Prior to that we had several episodes that were observed by the admitting team. We are very concerned that she is having a paradoxical reaction to the methadone…ugh. She is extremely agitated and irritable one moment, and then distant and nonresponsive the next. We were very hopeful that methadone would be a great med for Lucy since it is effective at controlling neuropathic pain. I am looking forward to meeting directly with our palliative care doctor tomorrow and discussing things. Not sure if I mentioned this, but our main doc is out of the country(he promises this is the last time for a long time) until February 25th which adds so much more stress to our already stressful life. The doctor that is covering Lucy for him knows our girl well, but apparently didn’t know she was starting methadone yesterday. I wonder how that detail was forgotten? I am not sure I am looking forward to seeing her as much in the morning, but we do need to talk. Hopefully we all come up with some sort of plan to get us to the 25th.
Thanks for all of your thoughts and prayers, love and support! Drew went home to get somewhat of a decent nights sleep and also so that he can bring me a change of clothes and some things to shower with in the morning. The kids are all snuggled in bed at our friends the Puff’s house, and Lucy and I are being well taken care of here at the hotel DuPont.