Tuesday, September 18, 2012

The bad days are back

It has been a bad day for my girl. She woke up around 4am this morning crying and she continued to cry the entire day as well. When she was awake...she was crying/fussing/moaning. She was getting very hot in her chair this morning (sweaty back but cold hands/feet), so we tried to keep her out of it most of the day. I canceled her therapies and we alternated Ibuprofen and Lortab all day hoping to keep her calm. She was never calm (and we had to keep both arm restraints on her all day), but she did take some decent naps so I guess that's the best we could hope for. When the nurse left for the day she put Reagan in her chair and brought her out to me and she hasn't cried since. She certainly didn't want to be messed with (even giving her meds seemed to irritate her)...but she was quieter than she's been all day. Tonight she fell asleep around 9pm. I just hope and pray she can sleep tonight (no night nurse til tomorrow). I hate that she has to go through this. She's obviously in pain, but there's nothing we can do for her. The pain medications don't seem to help. But that's mitochondrial disease. We HAVE to find a cure! Our sweet girl's life depends on it...



3 comments:

Heather said...

It was so good finally catching up today, only sorry that Reagan and the boy wonder were both having hard days.

Hoping and praying for a turning of the tide tomorrow.

Have missed you my friend. I feel like maybe, just maybe, I am coming back around after the difficult summer.

The VW's said...

Poor, sweet girl! Praying she feels better today! Hugs!

charity said...

poor girl i hope she gets past the bad days soon