I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, January 30, 2013

EMU Visit

Back at the EMU - this is our third visit here for Alex's seizure monitoring.  We got here Monday morning, but there were three of us getting admitted at the same time so we had to wait a while to get her hooked up. 

She was good for a little bit....

 
Then she started getting really bored.  So we played with the I-Pad for a little while but then that got boring too.


So then we decided to walk the hallways. 

But there was only so far we could go so back to the room we went.  Late afternoon and we finally started to get hooked up.  I let Daddy be the bad guy this time and he got to be the one to hold her down.  She was NOT happy about it either.  I don't know if it's because she's been here before, or if she's getting older, but she clearly made it known she was very upset.  We kept telling her no ouchies, but it didn't make a difference.  She was being held down and that never means anything good.  I wish so bad I could know if she understands what I'm telling her. The glue they use to keep the leads in place is so strong - so that could have been part of it too - the fumes bothered my eyes and we had a major contact high by the time she was all done.

 
By the time we were all done she was screaming and crying.
 

 
It took quite a while to get a smile back out of her.

And then she got revenge...less than 30 minutes after being all hooked up, she took her head dressing off.



By the time we got her in her chair for dinner it was completely gone.


And she wasn't a happy camper - and she stayed grumpy the rest of the day.
 
 
 
Day 2 started out pretty good - she was happy for a bit.

Mmmmm....notice anything missing in this picture?

 
Yep, head wrap missing again and she pulled leads out at the same time, which remember are glued in, so she takes nice chunks of hair out too.  One of the problems is that when Alex is super excited, or really frustrated, she pulls her hair.  For the last couple of days it's been like wrestling an octopus trying to keep her hands away from her head. 
 
Picture from this afternoon....again, notice anything missing?!?


Tonight she pulled out 10 leads.  The techs have been in here 5 different times to re-hook her leads.  I'm tired of fighting her :)

Speaking of tired, they changed the beds in this unit to the same beds they have in the ICU so that the rails are lower in case of emergencies.  Which is great....for them.  Not so great for me.  We pushed the bed to the wall so we only have to worry about the one side.  The rails are so low that she can flip right out of the bed - so she has to be watched 24/7.  I have to call a nurse to come in just so that I can go to the bathroom!


And this is what I'm 'sleeping' in...


We are on day 3 and she hasn't had any seizures since we've been here.  I can't tell you how FRUSTRATING this is to me!  The doctors laugh and say they have magical air in here - they see it happen all the time.  But that doesn't really make me feel any better.  I know it's only day 3 but it's exhausting being here.  She can't go but from the bed to her chair and she's over everything I brought to keep her entertained - she can't play independently so I'll admit I'm bored with everything too - and {Insert whine here :)...} I'm bored of these four walls.  I miss my boys, I miss the dog, I miss my routine, I want us both to sleep in our own beds! BUT I do NOT want to go home without any answers either.  Frustrating, frustrating, frustrating.
 
I totally wish I knew how to read these! 


 
The highlights of the nights are the visits from Aaron and Zach.  Zach loves on Alex for a few minutes and then he and I leave and go outside for a walk and talk and then go play in the day room while Aaron gets some time with Alex. 
 
A big thank you to my parents for taking care of things at home for me and for taking care of Zach till Aaron gets home.  Today they came down for lunch so I could shower.  Everyone has to adjust their schedules when stuff like this comes up so I'm very thankful everyone is so flexible and supportive. 
 
She's sleeping pretty soundly now.  A lot of her seizures seem to be driven by the barometric pressure - with the crazy storms moving in tonight we are all praying that triggers seizures for her.  Sounds crazy to pray for seizures since we're usually praying for the opposite!
 
Here's to hoping I have good news tomorrow!

1 comment:

Many Kinds of Families said...

Donna, we will be at VCU on Monday for my daughter's first seizure monitering. Thank you for the pictures, now I kind of know what to expect. I hope you get to go home soon. Sending prayers your way.