Wednesday, August 10, 2011


The g-tube feeding went well.  It was forced, although anticipated after the operation.  Her mouth and esophagus was so badly damaged by the breathing tubes while under she was hardly able to swallow.  Copious amounts of saliva would pour out of her mouth drenching her shirts and blankets around her face.  There were also plenty moments where she'd choke, gasp and cough on the broken skin and resultant flaps hidden beyond the uvula.  Then we'd try to look by having her on her back and ended up listening to that unnerving gurgling sound of drowning baby between her hollers. 
Something to be happy about was - we were able to jump the stated 48 hr post op wait to start the G-Tube feed.  I can't imagine if we'd gone for another surgery and all of this would have happened and we'd not been able to feed her or medicate her orally.
This whole elective surgery was for this exact reason.  We know it was a matter of time before something really horrible happened in the upper GI tract and a vicious catch 22 would happen.  We can now rest somewhat easy that the G-Tube is to be her life line. As well we can now avoid nearly all sucking action of her bottle feeds.
The family unit after a dressing change that was insane.
I was on the edge of a rage that blinds my rationality and makes my personality slightly caustic.  Slightly, so I'm told.
haha nervous laughter..
Raquel was also on the edge and I managed to get Dammit Janet and Gabi pissed at me.
At least they left the change room wounded after a couple sharp words.  I had to though.  We were set up in a small cluttered box with tonnes of medical equipment for helping poor kids in a way worse way then we were in.  We had no window making the confines amplify Raquel's angry cries.  Every time we laid her back she'd go ballistic pushing herself all around, making it difficult to keep up to where her hands and legs were from my pre-cut tray.  Again something to do with her throat.  Not sure how being horizontal aggravated it.  Adding more bodies in such a small room would have been difficult.  As well Simona and Janet in the same room with me while I'm stressed?  Forget about it.  They'd be all over me for things that got nothing to do with the situation at hand.  Which of course would make the situation that much more unbearable.  I can handle them if Raquel is in her tranquil state.  In fact it's fun that banter, but under no circumstance will they be allowed to be in a space where I'm already struggling to keep it together. 
The nurse from the unit was a great first time helper and got a good idea what the horrors of EB can be.  She apparently is around for burn dressings for other kids so much of what she was doing had been done before.  Just not holding a kid that's squirming where a wrong grip would result in massive skin trauma.  She mentioned how similar some of Raquel's larger blisters (on her foot) looked like the skin had melted off.  This nurse was also there for us in the first feed.  I have to say she was attentive and intuitive to what had to be done and did a great job all the way through.

 This crew I have almost no idea what they were up to in the last few days.  Mom was amazing keeping these two younglings happy and not in a state of neglect when Ren or I finally showed up.

I told the nurse we were going for a walk.  Ended up at Simona's house and quickly had a beer in hand.  Renata was there passing through on way home, we had a fun few moments talking and keeping on the lighter side of life.  Raquel was hamming it up and comfortable.  It was clear the fresh air and the walk was a good thing.  Plus she didn't have hospital staff constantly intent on checking her with cold metal instruments.

Raquel hardly missed a beat and was playful once past her drug induced grog post OP.  We played ball and a few other dexterity games.  She talked a little. She's tough.
Yes that reminds me.  I got my first "daddy!" as she pointed in disapproval at me for attempting to go out the door.  She needs a bunch more words of vocabulary.  Daddy don't go!
Although the eyes and the 'daddy' was enough to melt my heart and forget about where I was headed to spend a little more time with her.
Still at Simona's playing Hospital Fugitive

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