Last evening I was told she is tippy toeing around, as I'd been off working for the day and not seen Raquel for most of her waking hours. The question was how bad does her weight bearing look?.
Ren asks should we do a change?
I responded tired and ready for bed, go see what Raquel thinks. I hear from a way away that she doesn't want one.
I seriously take a moment to think about it.
Let her suffer through the night and be sure to get up every other hour or do it now, but now is time to go hang with Coco and read french books and tell her spider stories and use the excuse of a little spider to tickle her relentlessly and giggle ourselves to sleep.
After staring at the ceiling for a few minutes it was clear what we had to do.
We hop Raqu up some to side step some of the pain on it's way, then start a quick procedure on the bothersome foot. Once her sock is off its clear from the bumpy bandage being pushed apart from below with crimson red that it's big and ugly and the right decision was made, but by the looks of it 24 hrs too late.
After some screams and cries and a deluge of fluid to the floor shes nearly asleep in the chair as the final wraps and tying off of the conforming wrap are placed.
Fifteen minutes and its over and we've handled the biggest blister three years ago I couldn't ever have imagined.
By the time she's out of her chair and getting her night clothes on she has perked up and is acting like a party rocker. Chit chat with mommy and happy camper all around.
The edge of pain is gone, but I still find myself contemplating the whole pro and con of our pain scheme.
Yet as I go for a night kiss Raquel holds up her foot and says 'I can walk now, I'm good'. Her eyes are clear (not swirling in her head) and voice natural.
To suffer or not to suffer.
What is pain for a child that cant really describe the level or the source in most cases?
I understand many or most kids with EB aren't on a base dose of Morphine among other drugs, so I keep having to justify it to my self, second guess, ignore.....
It's tiring managing day after day after day.
.4 for morning, .8 in afternoon, every four hours .6 or every six hours .8, add tylenol, or advil as required, maybe an extra dose of anti itch for daylight hours? Constantly watching and adjusting depending on if she's less inclined to walk, open her eyes or more inclined to attempt to sleep off suffering and often enough cry for hours on end.
Bla bla bla, feeling sorry for our lot and EB sucks.
She didn't wake up before I left this morning, so at least the nurse makes the call this morning.