Thursday, February 23, 2017
Reagan was very restless last night. She dozed off with the help of medicine but then popped back awake almost immediately. I really didn't think she was going to sleep. I even prepared a little pallet for her in my bed thinking at least I could lay down beside her if all else failed. But when I laid her in bed, she dozed off and actually stayed asleep. When I woke up at 7:30am she was already awake, just laying in bed quietly. That was about as relaxed as she would be all day. Today has been a tense one for my girl. She's taken holding her pees to new levels today. Her nurse tried all morning with the warm water method and was still unable to get her to go. She was getting increasingly agitated and fussy so eventually she had to give her oxycodone to settle her down. She dozed off for a bit right before her PT came and her therapist was amazed at the level of tone she had even in her sleep. She was tense all the way down to the tips of her toes. She would lay very still on her side, seemingly relaxed and calm, but all you had to do is touch or talk to her to realize she was anything but calm. Definitely neurologically off. Her nurse finally cathed her at 1:45pm and thankfully hit the jackpot and was able to drain her super full bladder. That definitely seemed to give her some relief but the tone was still there. This afternoon and tonight her nurse continued to try to get a pee out of her, but she eventually had to cath her again at 9:45pm. We've never had to cath her twice in a day! Ever. I also don't know if I've ever seen a day like today where she's this ridiculously tense in her body (that wasn't a "bad" day with her screaming/crying). She would lay on her back with her knees up to her chest and her head crunched up to midline, like a turtle stuck on it's shell. Serious abs of steel. It was just NOT a good day for my girl. She was still wide awake tonight but did go to bed surprisingly easy with the help of clonidine, so I'm really hoping maybe she'll get a good night's sleep and wake up with less tone tomorrow!