Saturday, November 12, 2011

Dysautonomia is a mess

Reagan had a horrible night last night. She fell asleep with the help of clonidine but that only lasted 1.5hrs. She woke around 1:30am and she was cranky. I got up with her, fought with her for a while trying to hold onto her, but when she's like this she just isn't happy being held. I put her in her chair and she was slightly more calm but she never attempted to doze even once. She was WIDE awake. Finally around 4:45am I made Mike get up with her so I could go get some sleep. Mike dozed on the sofa but not Reagan. I got up at 8am to find her still wide awake and kicking. There's no doubt the bad days are back. Her dysautomonia is making us crazy. She's got constant chorea (she can't sit still for even a second), her temperature control is way off and she's sweating profusely, her hands and feet go back and forth from hot/clammy to cold/clammy, she's constantly trying to bite her hand, she's beyond tense and constantly arching, and she's not sleeping. I hate to see her like this. And it's so frustrating that after dealing with these symptoms for two years we still have nothing we can give her to relieve her symptoms or at least knock her out! This morning Grandma drove in and Reagan did give her some laughs (crazy laughs, but laughs nonetheless). This afternoon she's been all over the place...crying, laughing, quiet...but NO sleeping. I'm hoping the clonidine will work at least for a little while tonight...this girl really needs some sleep! Please keep her in your prayers!!!
*Oh...and she just had some redish drainage out of her g-tube...what could that possibly be from?!?! We've seen clear, yellow, and even some brown but never red. I don't like that, I don't like it at all.
**Found it. She bit the you-know-what out of the side of her cheek! Mystery solved. Poor thing!

3 comments:

Zoey's mom, Heather said...

I am so sorry Reagan has been having such a horrible time. I have been gone for my other marathon and haven't had a chance to check in.

I so hope she finds rest tonight. she needs it. You need it. You all need it.

Poor babies mouth :(

Clarissa said...

Abigail takes diazepam three times each day (6am, 12noon, and 6pm) plus clondine and melatonin at 8pm which makes her fall asleep (on good days) around 9pm and sleep for 6 hours usually... it has been a miracle worker! she started clondine over 2 years ago, and diazepam around 18 months ago (i think, can't remember for sure), and she has been more stable, overall, since starting the diazepam! she still has a bad day or two each week, but the nights have been much, much better... she would go days on end with little sleep, before. she has only bit herself a few times in the last year (was biting almost every day, severely deep). anyway, the diazepam seems to be what has helped Abigail... and she seriously was exactly like Reagan with the bad cycles... and just want to pass the info on, in case it could help Reagan! she still has good/bad days/nights, but nothing like it was before! praying for you all... we know how hard these bad days are!

jocalyn said...

darn. hope she is able to get some rest. and i hope you are doing well too.

sounds like your anniversary (i always forget we share the 11-11) was about like ours!

hang in there...