Friday, October 14, 2011


Last night Raquel was hanging out and having fun.  Cordelia long asleep.
We were playing at a few different things and she was a joy.
It started to get late so I started to slow her down and hook up her late night feed.  About half way through she started to stress out and tried to crawl away.  I figured she was just trying to get back to crawling around and playing.  Certainly a no-no with a tube and pump attached to her belly.
Then she elevated her need to move, roller over, stretch out, anything, just not laying on the couch in my arms.  At first, I thought it was her strong personality and her new found sense of entitlement to do whatever she wants, when she wants.
A kid with EB, with an attitude.

Wonder who she gets that from??

Then the crying turned to panic with some choking.
Ren came running, we quickly turned off her pump and I did my best to hold her in a somewhat horizontal position with her face pointing down.  Similar to how we got past the collapse of her pallet way back when.
Nothing seemed to work until she ran through three or maybe five gags and spits.  Not sure I was counting, only that I was covered in slimy bloody gunk, so were a few blankets and her safe zone on the floor.
There was a lot of blood.
Ren and I were looking nervously at each other wondering how far this was going to go.
The thought of another ambulance ride flashed through my mind.
Assuming she makes it that far, considering how stressed she looks and the curious amount of blood coming from who knows where beyond her famous little uvula.

The screams and gags stop.
Raquel looks up.
Looks around.
A smile, then right back into playing, as she leaves Renata and I in a quasi state of shock sitting on the couch.

Just like that.
It was over.
Back to normal.

No, better then normal, if you consider for the second night in a row Renata and I were able to sleep right on through.
Not a peep.

It wasn't till the few moments after I was woken by my alarm clock that became a little unnerving.
Dark thoughts flashed through my mind as we rarely experience a quiet night.
In fact we never have a quiet night after an evening episode.
I wanted to run and check, but.....
There have been a few of those, moments you want to run, but....
Within seconds of me standing in the hall studying her crib from a far she was up and crying for food.

Ren really has her work cut out while I'm away.
4 days is one thing.
8 days flying solo quite another.

It's fairly easy to get through a good 4 day patch (for Ren).
8 days and there will certainly be at least one moment of high end stress.
Could be internal, could be during a dressing change, could be anything.

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