Tuesday, April 26, 2016

Vocal and slightly on edge

Well the good thing about traveling back on Monday is we traveling on a day when we would normally be nurseless! So today (which felt like a Monday but was really a Tuesday) we had our nurse here! Reagan woke up fine, a little vocal/kooky but fine. She had speech at 10 and they worked on feeding again (she ate it UP)! Unfortunately about 20min later (I don't necessarily think it was related to the eating), she burst into tears. It appeared that it was tummy pain related...her tummy has been super gurgly all day. We gave her some simethicone but then the tears hit again around 11:20. They were short lived though (we gave her some ibuprofen) and told PT she could still come. Reagan did OK with both PT and OT. A little vocal with high pitched squeals at times...she definitely let her therapists know when she wasn't digging something. But it was good for her to get some stretching in after such a long weekend. She did doze off for a little bit and we decided against school. She was just too tense. We did squeeze a much needed bath in, so that was good. Another important thing to mention is the stinky pees are back. I'm not sure if that means another UTI or not. We're going to see if this continues tomorrow and then ask if maybe we can just bring in a sample rather than putting her through another cathing again! Hoping everything resolves tomorrow, but I'm not sure what direction she's headed. I did notice she had crackly lips yesterday and today which often is a sign of and increased acidity in her saliva and impending bad days. Let's hope not, but tomorrow will tell.

1 comment:

Diane said...

Did you guys buy some urine testing strips? Abby's Drs say the home strips(they go bad after about 3 months after opening but cheap on amazon) are accurate enough to catch basics if not better then that. We track Abby's protein,blood and a few other things that way and so far they match up very well with the lab testing. Though, not sure if you can get enough urine with the cotton ball to make the strips effective? Might give you a little piece of mind if they work.