Wednesday, June 19, 2013

Maintain the level.

After the dressing change ordeal the following day was up and down.  I think our newish new nurse doesn't fully understand the brunt of Raquel's drug requirements when her body is sore and what is required to maintain a level where she's not stoned or in pain.  This likely my fault for not laying out exact doses for day as I disappear for work for large stretches of day.
So when the drugs wore off and SH*& it the fan it was big time catch up and the stress levels and tension in her voice were alarming.  Then a few of the background issues that don't seem to be taken care of were pressed upon.

Such as Raquel's g-tube site, which has had ooze and blood coming from it.
I exclaimed it's been like that for a while. 
Weeks? 
Yeah maybe.
Should we do something about it?
Hmmmm.  What does that mean I think to myself?  Another hospital visit? ER? hahaha

I did mentioned it to a nurse at Children's the other day if they could find someone to come look at it.  She asked who was the Doctor responsible for it.  I gave the GI guy, but that wasn't who she wanted or thought should see it.  In the chaos that was a 4 hr dressing change of suffering by all, she stood in the doorway asking who??  I think I ignored her or was more focused on Raquel.  She disappared then as soon as we got Raquel's final hand wrapped so did we. 

We've been given silver nitrate or told to soak it to submission with saline.  Neither works as soaking requires her to lay still in middle of day when nursing help is on.
The silver nitrate is used to burn it off.  That being another one of the evil things I do to her which requires two people to hold her down while I dab basically a flame at her innards pushing the feeding port out...  I've been told it's not supposed to hurt unless we get it on her skin.  clearly that's not the case.  There always seems to be a tender part of it that makes her squirm and cry.  More of the bad daddy.  So the burning of her granulation tissue gets overlooked when possible.

Excuses.

Don't misunderstand any of this or from the other day.  I don't blame anyone for any misstep or moment of chaos we're just moving through the best we can and we are all learning.  I don't even think we're doing a bad job even as some things slip by that would make me shudder in fear should Coco have any of these issues, being of full of collagen 7.

I hate excuses.
Yes it's bloody.
Oh well... EB SUCKS.

But then last night, when Raquel's suffering was eliminated the three of us played our rambunctious nightly game of monsters under the covers at their usual 9:30 to 10pm bed time. 

Everything was perfect.

She was doing her somersaults and her backward free falls into the down-blankets.  The kind where team builders use as trust, but Raquel is more interested in stepping off and rolling the dice that Coco and I are by chance watching her and ready to be out of the way and ready to catch her should she have not lined up where the bed was behind her.

Last night she caught my knee on the bounce back of her blind daredevil maneuvers and sports a 25cent skin smudge in the middle of her forehead.
Oh well.  eb sucks.

Good blister or bad blister?

Good I guess, as we just carried on once I applied a patch of mepilex across the length of her forehead.




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