Thursday, March 17, 2011

Been a tough week.

Raquel has gone back quite a few steps.
Her feet have been a mess and now some new blisters have popped up on her hands.
She's been waking at 1am 3am 4am regularly and going from deep sleep to outright screams of pain and frustration.  Which in suite, do we.
A few days in a row we've also been battling the dreaded mouth blisters.
This morning was a blood bath.  She's completely wised to my needles and keeps her mouth closed while I'm trying to lance them which means I lance her lip, gum and tongue before I'm actually able to help her out.
Really, how much fun is it to see blood gushing from all the areas around the pocket of blood that you don't even want to lance in the first place.
It's like getting spanked with a wooden spoon as a kid (do people do that anymore?) and using your hand to block it.  Not at all clever, as I'd take a shot on the fatty bottom then the bony knuckles given the choice and time to reason it out, well I'm guessing I would have made that choice at 9 years old.  Too bad I can't do any of this type of reasoning with Raquel.
Then this morning half way to work I'm requested to do an about face because she's chucked a hand dressing.  hmm joy, I didn't even get my second espresso as the barista was in a bit of a tizzy and I couldn't be bothered to follow through with my near daily routine.
Apparently Raquel has been great during the days, but when I've been coming home from work in the last 7 days or so there have been nice moments, but ends in restless evenings, nights and mornings.
Her feet have reverted to what they were like before we discovered the foam layer wound into the conform wrap.
I don't see it a problem due to the wrap, just in the deep cycle of pain and kicking.  We've put a call out to our pain management Dr. to see what levels we can use to get her healed and out of this terrible cycle.
It doesn't help that when she plays it's often in a kicking motion.
Renata seems happy.
At least that's one of us just now.
Maybe it's the $600 she splurged on clothing for herself.  Renata usually takes 2 months to buy a pair of shoes and by the time she's ready to buy them they are gone.  So to see her bring home a bigbagoclothes was shocking.  Danger.  Two in a family with splurge buying habits is real bad.
What ever it takes at this point I guess.  Especially when I need a new pair of waders for Steelhead and Coho season this year.  My argument platform is much better positioned just now, not that getting hypothermia and or drowning isn't.

I just got a call from Simona about how to better adjust her hand wrap and add a correct splint.
I agree.  We had one, but it was so big she covered her face in cuts and blisters in hours.  She mentioned what cashiers use when they get carpal tunnel syndrome.  Some type of internal frame, maybe wrapped in to the conform like the foam on her feet is done?  Anyway, we'll figure that out with her OT skills and the bits of forming plastic given to us from the hospital.

Renata also had a great talk to another mom with a child with EB, Renata was despirate to call her and I'm glad she finally did it, then talk every other day about thinking about making the call.  She was able to get some more useful info on care of hands and feet, as well as talk to a mom just a few years ahead of where we sit.  The call was over and hour long and across continent, she huddled herself in the back room for most of it but now its over I'm getting it from Renata too. 
I can't anymore tonight, I can't think one more moment about Raquel's care today.  It's pained me all day while sanding and grinding a concrete bar top for a buddies restaurant (gratis).  In the loud droning moments of polish and sand all my minds eye could see was a bloody foot and a wet bib of blood on her clothing from our early morning mouth lancing ordeal.
I just want a sleeping baby and a cuddle on the couch with my wife.  Nothing else.



hmm Raquel and Renata are now out, sleeping on the couch.
Quiet.
I'll cherish this moment till it's broken to bits at midnight or 1am.

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