Monday, June 13, 2011

Turned the Corner.

The up's and downs of Recessive Dystrophic Epidermolysis Bullosa.  It's nearly always the same.
When I say to myself. 'Wow, we can't get better, Raquel is happy, minor sores, Renata and I are getting along well.'
Then it all falls apart....
Raquel is waking every couple hours in a screaming writhing fit, till her morphine kicks in, then once the first ebb comes back in she's an uncomfortable mess till she wakes full time in the morning.
That was three days previous our ER visit on Saturday.
It had just gotten too much and we phoned our pain guy, went over a few things on phone, but he advised us to go get a check.
I was certain with a little advise from Casey's Mommy that she had an esophagus blister and that time was needed.
But at the third day and it was the same thing all over again coupled with one of her longer pain cycles in recent memory.  The thought it could be something else, out side of our expert EB knowledge had to be nullified.  These days had pushed her to these limits of pain, irritation, as well I was getting well past my limit on how much nurturing I could provide.
Renata has a bottomless well of compassion.
I do not.
Can't help it, it's gotta be the way males and females are wired in it's simplistic form.  Me anyway.
In the last couple days after 30 minutes or slightly more of holding her in my arms and keeping her appendages from mauling the rest of her body while immersed in a solid scream, little bits of anger peak into my conscious.  Maybe it's futility.  I don't know, although I do know it's as far as I can take.  I'd had reached the point where I'd have to lay her down on the foam pad on the floor and just watch, distanced, but there, putting my hand in once and a while to keep her thrashes away from her face and the hard pushes and kicks to her feet and lower legs.
She's a mess, lots of superficial wounds around her face, but all major appendages have been spared this time around.
Ren, she can hold her walking around for hours.
And the dirty looks I'd get when she'd walk in with me laying at the edge of the couch watching Raquel writhe on the floor, is something else...

Ren is Superwoman.

Anyway, once in hospital she finally ate more then 1/4 of her milk at a time, she cried for only moments and we knew while we were fast tracked (120 min wait for everyone else - 15 minutes for us) that we'd past the worst of it.  Her voice was hoarse but the pain was gone.  Although we were approved for 1/3 larger of a dose to get her through.  So?

In the end we had a reasonable weekend and by last night, Raquel actually started to crawl.
She was in control and made it off the reservation.
Jasonette Borne.
She was exploring areas she'd not been on her own in the small living room we have.
An arms reach for us, a world away for her two days previous.

So a beautiful upswing I suspect is in our near future...
Cordelia's crying in the back ground is from going into the bath with a small 
abrasion on her knee from tackle soccer we had played earlier.  You can only imagine the compassion she must have had from her parents? haha

Which also means, we'll be living life and I'll not be blogging.
Oh yeah.
Renata turned 41 yesterday.  My wife officially has
I'm of course still in my 30's.

And the Canucks can become Stanley Cup Champions today..
Go! Crush those B's who whine about a little finger knawing.
Funny, but other then some of our media, not many Canuck fans are complaining about Boston's antics.  Business as usual.
The Ascot for beer and cheer anyone?

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