Wednesday, August 2, 2017

Nurseless and getting tense...

Reagan was very difficult to get to sleep again last night. We were all exhausted though, so I think we must've crashed. I woke up around 4am to Reagan making a lot of noise (sounded like she was getting upset). I found her pump beeping and her laying on top of her covers sideways. Based on the volume reading on her pump, it was obviously beeping for hours...we just never heard it. I tucked her in and started her pump back up and went back to bed. She was awake and sideways again when Mike went to check on her at 6:30. Right around the same time I got a call from the nursing agency (never a good thing) to tell me our nurse was sick and not coming in! Really terrible timing as we had a busy day planned for today. I had to cancel my dentist appt and skip the grocery store, but between Grandpa and a nurse they found to come in, I was still able to accomplish most of what I needed to do today. Reagan had speech this morning. She was pretty sensitive to talking, so while it wasn't her best day (she wasn't really wanting to use the eyegaze), she still participated answering yes/no to questions. So that was still a win. Reagan was a little more serious, but still talky and cute most of the day. It wasn't until this afternoon that she lost it! Not sure what triggered her (maybe something on tv), but she burst into tears and the nurse couldn't calm her down. I went up and held her and she calmed down. She eventually dozed off on the floor, taking a nice little nap but again woke up crying. Ugh. Not good. We've definitely seen an increase in tension over the last few days. Not sleeping as well. Today she had cold feet and the one red ear...both signs of dysautonomia. Ugh. Prayers that we can avoid a bad day. :(

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