Wednesday, December 11, 2013

A little bump

It was so long that we sailed along with tiny blips here and there.
Now it's one after another, yet her resolve is really making me so proud of her I can't describe.

In the last month we've had a week or so of choking, four or five days of eye issues, three days of smeared face wound and some troublesome care decisions, with the bar set somewhere around a coming dilatation of her esophagus.

The most recent smeared her face incident miraculously healed in record time but for the strange piece of skin that healed very taut just under her eye to the base of her nose.  After the second day when the swelling subsided and my biggest fear that the fresh wound at her eye lid would attach to the fresh wound at her cheek while she was sleeping didn't happen, we noticed that the one large patch of skin that had stretched across her face reattached and maybe, too well.

In my mind, I pictured my big thumb smudging at it so it would release and not pull between the periorbital and cheek to deform the area forever...  Gladly reason prevailed and I impatiently waited it out, but it still looks like it's deformed, subtle, but I see it.

By the end of a week exactly, her face was as bright and pale as she would have been previous this injury.  The problem is that she has since found a way to smear a couple other marks on each cheek.

Back to the irritating smaller blisters and wounds that I can handle as an EB specialist.
Yet each one, still extremely troubling as they add up.  It's that damn Dystrophic word attached to her subtype ringing relentlessly in my head spelling fear.

I was recently scolded for my use of expletives.  I'd very much like to use one now to release the frustrating and unbearable sadness that wells at times.  Just a two letter acronym?
So much pleasure.  So much I don't have to write when typed in a millisecond.


Yesterday we noticed her limping earlier in the day.  Ren was busy, I had to work, our nurse was not able to do a change without me and of course Raqu had a Dr. appointment at Childrens in early afternoon.  By the end of the day in the time before the nurse was to leave Raqu topped it off with a long and extended nap.  When she finally woke our minds were not into a change, as I soon slinked off to bed, but as Ren changed her into a clean pair of night silks, she notice some large wounds at her fingers.
Laying in bed I attempted to tune out the conscious world, yet Ren's voice kept breaking the peace with uneasy demands for my immediate presence.  It took some time to mentally prepare for what awaited and it was a total put off that I wasn't either on a boat or in a river, even it it was 12am...

Raqu was very docile, extremely cute and talkative when I got to the scene. In fact but for the moments shortly after she awoke in the morning due to eye pain she was a delight all day long.
I saw the tops of her fingers poking through the mangled dressings and in the light I could see right through her ballooned skin to make out the silhouette of her finger below.

I can't begin to estimate how long those bubbles were growing below.
Other than her eye issues that kept her in darkness and crying in the nights till we caught back up to her pain we couldn't tell she was in discomfort.

Yes, the danger of medication.

But as we were up and slicing balloons it seemed a perfect idea to do the full deal and check out her foot.  I touched and squeezed it to see where she might be in pain.  It felt squishy, but I wasn't sure it wasn't because her dressings were a running past due for a change or if my metal state was to be trusted.  She didn't wince, only that she pulled away and told me to take a hike. This is very much a typical reaction to the prodding and poking of "blister or not to blister"?

After we took off the top two layers it was clear that we were in for it.  Buoyed by the fact we were not at all prepared on the medication front, but we continued.

Raqu continues to amaze.

Ren did many of our distraction games with puppets and bubbles while I poked, cut and sliced at her feet and hands.  We certainly had moments where she shivered and shuddered in pain, but she'd push her head deep into Ren's neck and close her eyes clenched out the pain and found her way through it without the loud screaming fidgety fight I expected and have had to battle through for nearly the entirety of her life.

Clearly Mama rules and her nurturing presence key to many troublesome moments.  I don't have much of the nurturing aura due to how I'm pressed to do the most painful care actions on her skin. 

Fluid and blood splattered the floor and once we'd gone over her body in near record time.  Moments after she was clothed and settled she was out for a long quiet and comfortable sleep, for us all.  I can't even begin to count how many times my expectations of a situation with her EB has left me scratching my head.  But any extra sleep and ability to relax the brain I don't for a moment take for granted or waste time wondering.

Really, expletives get in the way of a wonderful family experience?
I jest and yes I'll try not to swear,

1 comment:

  1. Swear away Ryan. In my opinion any port in the storm is valuable. I am swearing right now as I look at these pictures. Fuck EB.