Thursday, September 22, 2011

Went to see Plastic Surgeon about Raquel's foot.

I was describing to the Dr. what was going on under the bandage
and all that came out of my mouth was 'bananaing'.
He asked a few times for me to repeat my explanation obviously waiting to see if I'd struggle to the conclusion of 'bananaing', so he could further get a giggle at my expense.
He finally described what was going on in medical language, although I can't repeat it as I'd already begun to forget all the Latin words the moment they came out of his mouth.
The bone here (I point) is bending.  It's either (I think) from the skin tightening or a bone malformation.
Bananaing.

Our Plastic Surgeon then bolts off to see if the Orthopedic Surgeon is near.  The one he suggests, oddly enough whom was too busy to see us for two months.  We now only have one remaining, officially, but possibly 20 seconds.
Renata started to speak about us having a meeting with her next month, but I gave the shhhhh! signal.  Nice to be able to jump the line when you have a Plastic Surgeon pushing the right avenues.

Anyway a different Ortho surgeon shows up just as I've pulled the last piece of bandage off.
Takes a look at the foot, then I go back into my explanation of 'bananaing'.  This time I realize the joke was on me.  He proceeds to push and bend the foot, checking out how the bones move.
I think you all can imagine how large Renata and my eyes were watching someone check out the torsional movement of Raquel's foot while holding her bare skin.  He did have gloves and a limited amount of aquafor, but not nearly enough for my liking.
I figured we'd have to sacrifice a blister or two for a plan of action that could be started there and then.
Once he had a good idea what was going on he started to tell about the different shoe/brace options and how a kid of her condition could handle the pressure.
I looked him in the eye and said it's likely you just pushed all the skin off her foot just then and that we'll be suffering with blisters for two weeks on that foot, now that it's healed.
A flash of panic in his eyes, and the response.  I didn't do anything.
haha
Well he may not have, but that's about the most direct pressure I've ever seen on her skin.
I've done a similar thing with her foot, but while it was wrapped in a fresh coat of viscopaste.

He was able to diagnose her foot had both skin and bone issues.
The Dr exclaiming that was 'good news'.
Still not sure how that is 'good news' even if I knew it already.
Now put a restrictive shoe on a kid that can't have restrictions on her skin and see what happens.

Our evening just rolled right into a night where Raquel did her best impression of a Werewolf.
It's those damn mouth blisters again.  Actually, could be an balooning foot too.
I'm just happy her mouth didn't look like she was devouring Cordelia's blood while she was asleep.
A night of midnight howling vs a drooling stream of blood.

Problem was trying to get at those deep blisters now.

Not only did we find out that she's got those foot issues as confirmed by doctors, I've realized all the mouth blisters she's had, have already begun to restrict her mouth opening.
One of the things I've read about with EB, now like many of the other issues we can check that off our list.
I realized this because she can no longer open her mouth wide enough for me to get in there with a needle.
FK!FK!FK!FK!
If a real problem goes down like the famous ER visit with the perfect hole of the uvula keeping her breathing going as the entire inside of her mouth had fallen off happens again, I'm not sure how easy it's going to be to get in there to pull, slice and dice all that flapping skin.

Quick! Bring in the KIWI! (as referenced from the first Blog entry)

Last night I ended up having to guess and take a blind stab at were the blister was at first inspection.
Until recently I could catch a fly ball from behind my back, get a good idea of trajectory, turn my back and wait for the slap of the ball entering glove.  So this is kind of the same thing (?).
It was huge, so there wasn't much of a chance at missing it.  Problem is getting past the moving tongue.  I did one poke and hoped that was it.
I'll need some of those tongue depressors the dentists use now.
It's very annoying as she's way bigger and her mouth is already smaller then when she was months old.

Which begs the question.
How much smaller is her Esophagus now?

Can't imagine discovering that now and still having to wait a month for a G-Tube.

argh.

So sad.

Just, so sad.

We get the flashes of recent weeks that she's in the best spirits she's ever been in, but really, the blisters and sores are adding up and in a few places already drastically deforming her from the scaring.
Yes I'm still making her do flips off the couch using strategically located pillows, and yes she might get the odd little blister from it, but if she doesn't get any agility training, once she gets a cure how will she be able to keep up to Cordelia on skis?










1 comment:

  1. Our plastic surgeon bolts out to see if the orthopedic surgeon is near. This suggests that, oddly enough which was too busy to see us for two months.

    facial surgery

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