Thursday, April 26, 2012

Stricture apparent

We had Raquel do the barium swallow.
Not exactly a procedure I was fond of.
It ended with her choking and gagging up chocolate barium screaming under an xray machine while three of us tried to keep her still.  Of course three blisters resulted at her elbow, armpit etc.
It worked though.  I was able to rest easy that my thoughts of a severe stricture in her upper esophagus was correct.
Rest easy I say.....
Rest easy that there is a decision to make of whether or not she actually needs one....
An esophagus that is.
I went over some of the options with one of our nurses "Mana" as Raquel puts it.
Another intubation, is it really worth it?
Just so she can eat/drink ice cream, water and yogurt?
Certainly regular food is never going to happen as the issues they cause.  We didn't even get to 15 months and she was in this situation.
In my opinion we've dodged many bullets to get her to this point with virtually no esophagus.

I'm going in no apparent line here.
I can't think about it anymore today.  Back to ignorance till her next GI meeting.

Monday, April 23, 2012

Now that Raquel has turned the corner.

Renata and I are tired and I'm a lot crusty around the edges.
I have a headache and maybe Renata is just letting me be the moody one for a day or so till she takes a turn.
Raquel was great today, although past dressing change I did my best to avoid her.  Saving my energy for the scream fest tonight as it'll be my turn.  Ren slept with her on the couch after I had enough at about 2am. 

Not walking much, but that's to be expected.

 Raquel hamming it up between feet.

 Here it's obvious how her toes have been deformed since birth.  I don't understand why her big toe was stunted with the next two.  They were like that from birth.  I asked the Dr's about it, but got little answer as if they were thinking "you got much more to worry about than toes buddy".  Also after this round of foot and hand blisters it's very easy for me to see how quickly her webbing can and will likely happen.  Those three toes above are a mess and the pad of her foot is looking quite odd.  I've just noticed the splinting material I've been using is setting less and less into her webbing ie it's starting to not exist.  The other foot is fine (kind of).  shh don't tell Ren I think that.
I sent her away when she came in the door for today's dressing change.  Ignorance is bliss.

It's easy to see why she's been going out of her mind with the itch of late.
These shots are after a good soak prior to re-bandage.
I'm starting to wonder if my technique has reached some limits with her.
I don't think so, but it's hard not to think about the whole procedure.

Tomorrow is Children's Hospital and a pre-check on her esophagus.
I'm very nervous.
Not about going or the non invasive procedure (I'm told) but more about what I expect they'll find.