Monday, June 14, 2010

Too much chorea, too little sleep

We're running on empty over here. Several nights in a row of only a few consecutive hours of sleep...we are seriously exhausted. Last night Reagan really threw us for a loop. After having a pretty good day, she turned on the crankies at night. I was up with her til after 1am just trying to calm her down. Finally she was calm enough to lay in bed and I fell asleep (not sure if she ever did). Around 3am we woke up to her coughing, we leapt out of bed to find her choking on her throw up. Ugh. Exactly the scenario I wanted to avoid. So at this point I had to put her in our bed so I could keep a close eye on her (good idea because she did it again). Finally she did fall asleep and slept in til 10:20am on my pillow. At least someone got some sleep...she didn't get much, but I'm glad that she got some. She woke with a vengeance though, screaming and crying for 2+hrs. Her nurse was really concerned because her heart rate was over 200. Tons of chorea. She couldn't hold still, she was moving nonstop (moving her legs like she was sprinting). After talking it over with the pediatrician's nurse, we gave clonidine a try (1/2 pill). About an hour and a half later she finally settled down. The rest of the day she was fairly content. Don't get me wrong, we were walking on eggshells with her, but no more outbursts. Not sure what tonight holds. We're dying for some sleep. I decided to try some periactin tonight, hoping that it will put a stop to some of this nausea. I haven't seen her this nauseous/throw-uppy since she was in the hospital (before the gj-tube). Hopefully it will help her sleep as well. How can you sleep if you're throwing up? Horrible. Not sure if I should try some more clonidine. We'll see how things go. Please keep her in your prayers.

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