Monday, June 17, 2013

The Good, Bad and Ugly.

Asking, does the irritating person.
'So, do you want the good news first or the bad?'

That moment in a perfect world, has the person holding the information for effect also holding a handful of chicklets. 

The Bad.
Ren has gone away away for family reasons that are tough and difficult to say the least.  We're holding down day 3 of 21.
The Ugly.
Day 3 of 21 saw a 5am wake-up, a difficultly consoled then eyes shut till shortly afternoon by the reigning short person in the family.
In the mean time I had my first Heritage Commission meeting discussing a year old project that's seen many turns, breakthroughs and fall backs to amble in to a meeting of make or break it.

Ummm, can you spell stress?

It didn't break, so on we go!!!

Then a nurse and my mother with Raquel met me at Children's Hospital within the hour for a consultation that was to give us caregivers the upper hand at dressing changes when her feet in particular need special attention.

It was a bloodbath...

It kind of went like this.

Deep breath.

Wait for Big M to take hold.
Remove dressings on hands so she can play and be distracted while we go to feet where I could finally get at some really ugly areas under her toes trimmed and tidy.  So that, in my estimation giving her a chance at good balance and walking pleasure should an eventual CURE or not come our way - bad IDEA!!!
As distracted, she was.  But to at any cost not let us finish up her dressings anywhere on her body.
Start foot.
Nope, not cooperating.
DANGER...
Try hand instead of foot.
Nope not cooperating.
Wait a little for the drug to get in there some more....
Shit, she's got a blister on her palm from pushing around on bed while she battles us.
OK try bad foot as the bandage seemed squishy and likely had big blister.
Massive blister located.
Snip and the deluge, bloodying the bed...
Raqu majorly stoned and restless shuddering in pain while flopping all over.  Very difficult to contain.
Shit now she's nearly naked and out of control and how to minimize more blisters?
Do coverup on this foot and go to somewhere else on body to come back later when more drugs are on board.
Shit she's got another blister on her elbow from wrestling us over her hands or feet.
Fuck, who cares just get this kid back to her safe mode wrapped and bandaged....
Finally we finish a foot and one hand.
Dr. tries Fentenol.
Not really working in getting her to comply.

Takes time but she's still not giving in to let us finish her remaining hand.
Go back to bad foot snip more of fluid filled bloody balloon that gravity had previously pushed out of my sight. The foot still wasn't an easy bandage and there was still no way she was going to let me poke and prod at the giant scab, scar, pile of dead/living skin pulling her toes under in the EB nightmare that is Recessive Dystrophic.

A second Fentinol.
We finally do last hand with a minor wrestle and a little distraction, but still she's tough as nails and like her father, no sense of backing down when mind made up.

HOLY MOLY.

Back at home and it's 8 long after our day there and she's KO'd.
No wonder.
I was able to take a nap with her for an hour, but it was only one of us to rouse when her big sisters foot steps and giggles came stomping in the house from her day of school and play.

The Good.
Fathers day was bliss.
Took my mom and two girls sailing on Das Boot for five hours and the only (I realize now where it came from) issue was Cordelia kneeling on Raquel's foot while climbing around in the spacious cabin.  Raquel spent all the good windy bits where mom's eyes were soccer balls as a nice little breeze shuddered the little boat and rocketed us up wind to home sleeping upfront and in the shade.  Probably the only time I was content our saggy sails were closer to sacs than the carbon sails I'm used to seeing on Mpower (Farr30) while racing with the A-team.

Ready?

Waiting for wind.  Raquel sleeping in the cab.

shhhhhh! don't tell Andrew how messy a sailor I am when he's not there to observe.

Raquel not taking no for an answer about helming the boat.

My knees look a lot like Raquel's when my mountain bike works

Indian Arm.



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