Wednesday, June 29, 2011
Last night was another one of those nights. We both started off in our own beds but that only lasted 30min or so and from then on she slept in her chair and I slept on the sofa! Reagan was asleep, awake, asleep, awake, asleep, awake. It was a loooooong night. Today she's been about the same as yesterday. She's still very tense, having lots of chorea (even some of the little episodes of chorea where it seems like she's running...I haven't seen that in a while). Even though she's calm, her heartrate is staying ridiculously high because of all the chorea (ranging from 130-178 and not going any lower than 115 even with propranolol). Her hands and feet are still super cold and clammy, although for short periods one or both of her hands warm up and feel almost normal. She's still very zoned out and not interacting with us or her surroundings (except for the occasional laugh at a loud noise). She also seems really pale and looks a little sickly. I spoke to her neurologist a couple days ago and he said that her bloodwork from last Friday indicated that she might be fighting a viral infection (because her lymphocytes were elevated). I'm not sure if that has anything to do with what she's going through now or not...since on Friday she was still having good days and seemed fine. Tonight she started getting nauseous. She's been making a lot of gagging faces and is more spitty than she's been in previous days. I drained some foam from her g-tube but no liquid came out. Hopefully we're almost done with this bad cycle. Friday morning she's supposed to have an extra long gastric emptying scan done (6hr) and we're not going to even attempt to do it unless she's feeling better by then! Please continue to keep her (and us) in your prayers! I'm not sure how much longer I can continue to run on little to no sleep!