Wednesday, December 15, 2010

Back to see the crew of Doctors.

We decided not to do our typical dressing change at the hospital today.  Last time we came home with one of her largest blisters ever.  Hard to focus with questions and ideas on her care while concentrating on a moving target.
Pain issues and over all comfort was a main area of discussion.
Where is the line between fussy moments with a baby without EB and one with EB? 
In a annoyed second of hunger she can produce a dime sized blister as she raises her arms quickly to her cheek or eyes. She has a Dr. Jekyll and Miss Hyde thing going on now.  Her obviously dominant right hand has turned the right side of her face into the surface of the moon, her left side is still quite angelic and not much different looking then Cordelia at 5 months.

In the last week most of her sessions of pain or discomfort have been a result of either mouth blisters or her continued and spreading sores on her feet.

The ones in her mouth are quite scary.  She was choking a bit last week.  I could tell the water in the blisters was rolling back under the top layer of her tongue and past her uvula.  For a few hours one day she'd cough her EBM up and cry in pain.  I knew she had mouth blisters at the time, but usually when we spray the milk from outside her mouth she'll still swallow.  This time I could get it in past the blisters on her tongue and gums but what ever was going on in her throat was having none of it.

It's painful to read stories for operations on DEB kids to take away the built up scar tissue there...  Let's keep that from Renata still...

Can you tell, we eagerly await the addition of solid food?
One of my buddies used to make light of a Simply Red song directed to others of older generations stuck in the 70's 60's etc.  The glory years.  It's just a quiet under the breath "Jee, Holding Back the Years".  Usually I get a little giggle.  It's not so funny right now as it's not even years I'm looking to hold back.  It's the months, weeks, days for us.  When I think of him now, most of us boys from 20yrs of friendships are well into family lives kids etc., hahaha he's still a swinger playing vinyl in clubs to all hours.  I'm not so sure he'll play a Simply Red song anytime soon, but his snide humourous comment seems reflected now.

In any case, our conversations brought us to stay ahead of pain with medication.
We usually see when dressing changes are going to be difficult before hand.  As she tends to have fussy outbreaks that progressively get worse.  She's been a wonderful kid in the disgruntled child department so when she's not happy it's not because she just plane hates the world.  There was only a month or so of the evening colic I've heard about from others.
Now she just arches he back and cries a bit then you'll know she's moments off from sleep.  Anything else at different times will usually give a signal that something is up.  We usually find out eventually, but sometimes because of a Monday, Wednesday, Friday dressing change regime what's hidden usually stays hidden and she and we live through it.

The great part, (if there can possibly be a positive to EB) is if a blister does make itself seen, is how quickly she settles after lancing it.

I wonder if it's like removing a big ugly sliver from the tip of your finger?

The next part of our visit was to design new boots with the OT department.

They look like moon boots or those surfer boots that went urban hipster a few years back.
I'm hoping they work with some minor modifications.
So far I've only put one on.
I'll deal with the unwrap of the other foot tomorrow.

Renata already forgot to put it on after a diaper change.  I caught Raquel at the beginning of a kicking motion.  I'm not very confident she didn't do some more damage before I isolated her foot.  She's been sleeping well for a few hours now, so maybe we dodged a bullet and tomorrows change will only be about monitoring her healing feet.

Cordelia, Raquel and I were playing shoot the rabbit in our living room last night.  Cordelia was the rabbit, with Raquel on my lap I'd hold her arms and pretend to shoot Cordelia as she ran back and forth in front of us.  Cordelia would pause and we couldn't shoot or we'd be out.  So she'd be standing in some very funny positions with contorted facial expressions, Raquel was giggling something fierce the whole time.  She absolutely loves her big sister and being in the middle of the action, that is clear.

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