Tuesday, August 30, 2011

Today has been horrific. 
We got up at 4:20 am, after going to sleep with a crying Mabel at 1 am.  As soon as I woke up, I felt sick but I thought it was from so little sleep and nerves.
Turns out, it wasn't.
Mom & I were barely out of town on our way to Peoria for Mabel's 24 hour test when she had to pull over so I could throw up on the side of the interstate. 
And then again, in a plastic bag when we were close to the hospital.
When we got here and to our room, it took forever to get Mabel's probe placed and even longer to wait on the results from the x-ray making sure it was in the correct spot. 
She was hungry and exhausted and couldn't eat.
And hadn't had any of her meds.

Finally when it was time for her to eat she couldn't get herself calmed down long enough to do so.  We slept for awhile and she has been better since.
 I'm still feeling really bad but my girl is better. 
Actually, she's amazing. 
The arm bands are to keep her from pulling at her tube but I actually really like them to prevent bruises from tapping:)
She has eaten fairly good and seems to be in good spirits this afternoon. 
I'm hoping for a better night tonight!

What I've noticed just being here is how little the Dr's and nurses truly know about Mito.
It's a frustrating and frightening feeling. 
And beyond that, it urges me to raise awareness and help fund education or research even more.  These people need to know how to deal with our kids.  They are not the typical case.
They are zebras.  Not horses.
[more on that story later...;)]

Beyond that frustrating is the exhaustion of explaining Mabel herself.
Medical history over and over and over.
Medications over and over and over.

I'll be ready for a sedation vacation after this is all said and done...

Thanks for your prayers and encouragement!  We are so grateful for you all...


Tiffany said...

Oh, Ramee. Please know that I am praying!! You can do this because HE lives in you. Feel better soon. ((hugs))

Verena said...

Oh girl...that sounds like a really crazy day. Sending you some HUGS and i hope you're doing better.


Frome one "zebra" mom to another - you are in my thoughts and prayers! So glad you are in my life, as I feel it is such a blessing to know another "zebra" mommy in the area! :)