Sunday, February 24, 2013

Blood and Suffering

Often my mind is a running mess trying to anticipate or rationalize Raquel's needs or what we think they are.
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.
Ho hum.
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.

1 comment:

  1. I could have wrote all the parts of this post where you talked about pain management. That is the think I have struggled with the most. It seems like the EB world is split in half on medicating or not medicating. We were in the not medicating camp at first but have slowly began medicating Anton. I see the benefits to both sides but for me it came down to his comfort. When I would stick my hands in his bath water and would have a small cut on my hands it would burn like crazy. Then I would have to think of that all over his body. I still struggle a lot with "is this the right thing, will he still be successful in life if we are doing pain meds so early???" but in the end we think this is the right choice for him. So we do Morphine and Ativan before dressing changes and if he is in a lot of pain through out the week we give him Morphine to help. We have really only had to do it during the week for one week but we are open to it if he needs it. And still struggle with it all at the same time.

    Have you ever heard of gabapentin or the other name for it is neurontin? It is a pain med and is a nerve blocker and not a narcotic. It kinda helps the nerves to stop firing all the time. We started using it for Anton a few months ago and it has been a HUGE help. He takes it three times a day everyday.

    Thanks for the comment on our blog, it made me feel better. I like to do everything myself but I know I can't.

    Please stay in touch. vkdelgado @ hotmail . com