Saturday, May 16, 2015

Bad days are upon us

So, I can't lie, I was worried. I had counted the days and realized that her last bad cycle started 12 days after her previous bad day (and yesterday was Day 12). I knew there was a chance this could happen, but I was hopefully optimistic. There really weren't any other "real" signs. No bad day smell, no dry lips, no temperature regulation issues or increase in sensitivity or tension. But the long nap yesterday was out of the ordinary and she had a few stinky pee diapers (just something to take note of). Anywho, Reagan slept in her bed last night but woke me up around 5am with a fuss. I went in her room and she was still asleep but agitated. Knowing it was likely we had run out of good days, I tried to get a head start and gave her a dose of oxycodone. This helped her to doze off until 8am. When she woke back up, she was tense and fussing, but not crying. I got her changed and settled in her chair, but the more I interacted with her, the more it was obvious...the bad days were upon us. Then the crying started up and she's been crying or moaning/fussing every waking moment since. She's just plain miserable. Her lips have now become very dry (not all peely just yet like the usually get) and there is a lot of finger biting and hair pulling going on. Finally this afternoon I had to put on one of her arm restraints because she just kept fish hooking herself over and over again. The oxycodone seems to be the only thing helping her and it's only working for 2 hours or so. Then she wakes up and is miserable and clonidine/ibuprofen aren't touching her. I definitely think it's time to have a discussion with palliative care about her dose. Only working for a max 2hrs out of 4 (she's supposed to be getting it every 4 hrs) just isn't cutting it. It's obvious, she either needs to be getting it more frequently or at a higher dose. For now, we'll just try to hang in there and get her through the weekend, but I definitely need to talk with them about it next week! Very nervous about tonight! Just praying my girl can get some sleep and wake up feeling better in the am! 


1 comment:

Marc said...

I hope your days get better!