Thursday, May 23, 2013

Raquel's body 05/23/13

Webbed middle toes.  Her skin quite translucent and in bright light it almost looks like I can see through the onetime space.

This one in particular is very itchy for Raquel.  And she rubbed it with other foot and I did emergency change to realize the blood had transferred from other foot. It's clear here how the webbing takes place as under the toes becomes bridged to pad as toes are pulled and contorted by the pressure of tightening skin and scar tissue.
When we see her limping about it's either a bad one here or bottom.  A few posts ago it was both and she refused me to help. Imagine this, after a weekend hike in new boots.

What happens when wounds aren't managed promptly? The fluid sags and releases the epidermis, slumping further till we get scissors to cut away at edges to stop gravities evil work on her skin.  Red areas are scissor cuts.

Where I dropped her.  Amazing wound recovery.

Saw this for first time today, after what I heard was a scooter accident. Wasn't impressed that a scooter accident happened in the first place but it made me feel sick and terribly sad. 

I'm still extremely proud of her hands. Even though this happens once and a while.

Battered knees at 3 years old.  Milia are the pimple typed deposits.

The perfect foot.

 Perfect, except for the fact the big toe is being pulled under by scarring and the index getting pushed up and over.  Raquel and I battle relentlessly till I usually give up in fear of ripping skin off her foot or leg trying to hold her still while I cut at the thick scar tissue building up and pulling the toe under.  She's been getting her hands in the way when I'm about to cut fending me off with vigor.  An accident is going to happen!!  I can't wait for some M&M power!!!! (yes pain clinic - hear me)

Friday, May 17, 2013

Steady and holding

It's been a while.
I'm not very interested in updating as there are too many other things to do as the sun and good weather bathes us.
Raquel has been pretty good.
Although I think she's got the most wounds now ever.
It seems her weight and mobility are her main enemy now.
Oh and her dad - for dropping her.

Thankfully the stripe I raked off her back has healed in record time.
She's a tough nut.  Yesterday she was limping all evening.  Every time I asked if her foot hurt she'd look at me in a defensive tone and exclaim 'NO!!'

Oh well, I'll find out in a moment or two.

Wednesday, May 8, 2013

Fluttering by

It's odd losing track of where your mind and body are at.
When asked about how are the girls - particularly Raquel I say excellent.

Yes it is excellent when I compare all the horrors EB brings, but it isn't excellent at all.
It's a horrible, mutilating, debilitating disease, but of course you all know that.

My state as caregiver to Raquel has been even keel for most of the time and dark moments of 'EB sucks' sweep by once and a while with a side of 'why me?' and a sprinkling of a deep inner suffering.

It's cool when I ask the redundant question of Cordelia, Ren and Raquel 'who wants to come fishing or sailing with me?', and it's always Raquel that jumps up excited and says 'yes meeee!!!!!'

The crappy part is I need the other two along so that things to go aryan.  (no not spelling mistake, I think awry was a word long waiting for me to enhance it's meaning).

My EB story of day.
We were doing the dressing change today and while I miss placed her main blanket for her stool used to place under her bottom and behind her back to keep her skin smearing off from the wood seat during any struggle or movement during the procedure, I tried a different blanket.  Except it bunched and pushed her awkwardly out from the back rest.  I didn't realize that the wood shelf that is her seat was also pulled out and dangerously at edge. 

In a quick short sighted blunder I pulled the blanket with Raquel to reposition her and the seat just slipped out of it's hold and collapsed with her stuck to it and went straight down two feet.  Doing exactly what I was trying to protect, she or I smeared a 3" path of skin off her back from the top of her diaper to the middle of her shoulder blades.

Bad Daddy.

Probably the largest path of skin removed from her body at any one time ever........
I've since done my best to avoid her as I have to deal with the blood and oozing fluids down her back and clothing.  Gladly these are the days the nurse is best suited to take over and remove Ren and I from the steady suffering that EB is.