Sunday, November 20, 2011
Reagan did not sleep well last night. She woke around 4am so we tried putting her in bed with us...but she was not going back to sleep and just kept kicking around nonstop. Finally around 4:45am I gave up on her going back to sleep and I just got up with her....we've been up ever since! She was antsy but OK. She actually made it through the first half of the day without a problem. I could tell she was off (super clammy hands and bad day smell), but she was still behaving herself. My stepmother even took her for a walk and she was fine the whole time. It wasn't until around 12:30pm when she started fussing here and there. She was pretty gaggy and I drained a ton of fluid from her g-tube (but she never threw up). She spent some time outside swinging on the swing and she was good the whole time. It wasn't really until late afternoon/night that she became more uncomfortable. Non-stop chorea, rubbing her face, grunting, gagging...overall just not right. When you hold her she's SO tense and she arches a lot, she just can't get comfortable. She seems a slightly more content in her chair but she's just so uncomfortable, I have no clue how this is going to pan out tonight! I got less than 5hrs sleep last night, so I'm pretty exhausted! Come on clonidine!!! I'm hoping this is the worst of it and that she'll avoid a full out bad streak this time around. Please keep her in your prayers.