Tuesday, July 29, 2014
Well, things have definitely gone from bad to worse. Reagan was up nearly the entire night last night and she was miserable moaning off and on! I had to move her to her chair at 1:30am, then again at 2am she was fussing, and again at 4am, and then I got up to run at 6am. Needless to say, I'm exhausted...we're all exhausted! My poor sweet girl is exhausted...and now she's nauseous again. She had therapy today (PT & OT) and did very well, considering. But as the day went on, the nausea got worse. And her chorea is still out of control and she's jamming her fingers down her throat (which REALLY doesn't help when she's nauseous)! Tonight the nausea was relentless. LOTS of throw ups. Lots of retching and gagging. It's painful to watch. And you have to be vigilant, sit literally right on top of her, because it could happen at any moment. Her throat is quite junky from all of the gunk that's been coming up, but hopefully it's just her throat and it's not getting into her lungs. As luck would have it, we have a GI appt tomorrow morning. We will definitely be going over our options and try to figure out our next steps if this nausea does not stop on it's own. My poor sweet girl. I just hate to see her suffer like this! It's been so long since we've seen this kind of nausea, but there has definitely been a gradual increase in the last week or so (and I don't like it one bit)! Tonight I gave her her pm dose of clonidine early, hoping it would help her to doze off, but instead it had the opposite effect, making her irritable and fussy (heartrate in the 170s)! After a while of that, I realized it wasn't getting any better, so thankfully a dose of Lortab was just what the doctor ordered, and she was eventually able to settle down and fall asleep (her heartrate is down in the 120s now and her O2 is in the low 90s but that's because she's got her head tilted to the side). PRAYING she can stay asleep and that the nausea is gone by morning. Please keep her in your prayers!