Wednesday, January 4, 2017
It's been a miserable day for my girl. She didn't sleep well last night and was tossing and turning a lot. Finally around 4am she was vocalizing and obviously not going back to sleep, so I moved her to her tomato chair and gave her some clonidine. I'm not sure if she ever actually went back to sleep. She let me sleep for a while though and then both kids woke me up around 7:30am. Reagan was more tense, but calm. She let me know she was awake by a loud squeal! She was doing a lot of teeth grinding and foaming at the mouth, so I was a bit worried about what the day might have in store. I was downstairs getting Reagan's medicines at 8am when there was a knock at the door. It was her nurse (who was supposed to be off today)! Apparently the nursing agency never told her she could have the day off, so she assumed she still had to work! I was glad to see her though and even happier to have her around the rest of the day which proved to be very challenging. Reagan just got more tense and stressed as the day went on. She had a strong acidic smell to her breath...indicative of "bad days". Lots of laugh/cries. Very vocal but moany, like she was in pain. She responded well to oxycodone though and it helped her sleep a lot of the day. However, it wasn't a restful sleep (she kept yelling out during sleep) and it was brutal when it wore off (tonight it only gave her about 2hrs of relief instead of 4). She seemed to be the most uncomfortable tonight. Lots of crying, not responding to meds, and just plain miserable. Mike said it seemed like something was torturing her! It was that bad. Definitely the worst we've seen in a LONG time. He finally got her to sleep on the floor of her therapy room. Not sure what sleep will look like tonight. Praying she can get rest and sleep whatever this is off.