Saturday, August 22, 2015
Reagan had an AWFUL night last night. Lots of crying. She first woke up around 12...Daddy tried laying down with her but that didn't help. At 12:30am she was crying again so I got up and changed her and moved her to her chair. A dose of oxycodone eventually helped her to doze back off. She woke back up around 4 and was crying again. I got up with her again, changed her and picked her up. She immediately settled down and fell asleep. Unfortunately I can't sit on the floor holding her for too long because of my back issues so I had to move her back to her chair, where she of course woke back up crying! Eventually a dose of clonidine helped her to fall back asleep and we all slept til right around 7:30am. No nurse on the weekends anymore...GREAT...of course when "we had a nurse" she still wasn't showing up so I guess it's not much different. Not that I would've trusted that nurse with my girl on a day like today. It's just hard to be up most of the night and then deal with the same thing all day! It's been a day of many tears. The gut wrenching tears that really break your heart!! Poor baby. I have no idea what has caused these days to come back, it's awful! I SO want them to go away again...for good. The crazy thing (that's not at all like previous bad days) is that her body is not super tense, if anything she's been pretty still with her hands to her side, and she's also thrown in laughs here and there throughout the day...both very unusual for bad days. Temperature regulation is fine...she's got super toasty hands and toes...if anything she's felt a little warm to me all day. Medications aren't working very well. Sometimes she gets relief for an hour or two, sometimes not at all. Not good. Needless to say, it's been a looooooong day for everyone. Tonight she seems to be mellowing out a little. Even falling asleep on her own without any medication...only to pop back awake 30seconds later (laughing). Super restless. Hoping she can settle down and actually fall asleep (and stay asleep) tonight. Please keep our girl in your prayers!