Monday, September 26, 2011

Mouth and Esphagus

On Saturday I decided to have a little fun at a design party with a few friends.
As I walked out the door, Ren gave me strict orders not to come home at 3am.
mm hmm.  Sure, I can get in before three I think to myself....
Some how time lost it's presence from 11 till some time after two.  Must have been the scotch as the first few hours went by rather slowly.
At 2:50 I came charging through the door and proud that I'd gotten home under the line.  With a drunken grin I was ill prepared to deal with what was going on as Ren gave me the stink eye while holding screaming baby.
I also then found out that coming home shortly before 3 am wasn't actually my dead line it was more in the midnight to 1 am range.
Seriously?  Why not say one then....
Raquel was a mess for the following 12+ hours.
Eyes shut for most of the morning.
ahh her and I.  As she suffered with EB and me with intoxication.
The only thing that kept me from having to suffer on my feet was that Ren's parents are still here visiting from the Czech Republic and filled in.  By about 3 pm both Raquel and I were able to come out of the fog of pain and suffering.  Except, bed time for Raquel brought on another cycle of very uncomfortable gurgles and choking till she was able to cough the deep blister apart.
It's strange to be holding your daughter in anticipation of the blood stream to start flowing out the side of her mouth.  So that she can finally relax and maybe get some rest.
Which is exactly what happened.  Ren noticed the big red patch on her blanket and I sighed in relief as I could feel her body slowly let go.
She was able to drift off and nearly sleep the night through.

This morning, she was wide eyed and standing in her crib babbling for someone to come get her.
This is a further indication the G-Tube is working it's wonders.
These type of flare ups would last at least a few days as is previous documented.  Her's now last about 24 hrs and it's back to near normal.
What a life.

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