Monday, November 21, 2011
Oh what a night (and what a day)!!! Reagan didn't really sleep at all last night. Maybe an hour or so after her Clonidine and then she was awake and she was crying. Mike and I took turns staying up with her but she didn't even come close to falling back to sleep. She would cry and fuss off and on but overall she was just very tense and having tons of chorea (we had to put her arm restraint on to keep her from biting herself). She did NOT want to be held so she spent the whole night in her brown chair. Then this morning the non-stop crying started. Literally every waking moment. We haven't seen her this miserable in a while. Tons of chorea, sweating profusely, tense and arching...a horrible bout of dysautonomia. She had three big throw ups and then finally fell asleep (I switched her over to pedialyte for the rest of the day to give her tummy a rest). She took a decent 2.5hr nap but then woke up just as hysterical as before. We tried Lortab (tylenol with codeine) and it did absolutely nothing for her. Then this afternoon I gave her a dose of Diazepam, her third dose ever (the first two did nothing). We gave her a bath right after the Diazepam and found her falling asleep in the bathtub! We got her out and put clothes on her and she'd occasionally cry out, but she more or less stayed asleep! I'm guessing it was probably a combination of the Diazepam and the warm bath that did the trick. She slept for about an hour and then woke crying once again. As the night went on, the crying turned into moaning/fussing, with periods of stressed but quiet. She kept yawning and trying to doze off but each time she would fall asleep, a burst of chorea would hit and wake her up. I know she's exhausted...I just hope she's able to get some sleep tonight and I pray for a better day tomorrow for my girl!