Monday, September 10, 2012

I didnt utter those words

It's a simple sentence spoken between Ren and I, often in a quiet moment over dinner or a ride in the car that basically reflects on the erosive suffering EB can have on all our souls.

"I can't believe how well she is?"

Virtually with in moments of us saying it, Murphy wakes up and lunges at our collective well being.  I'm far from Stupidstitious and on any occasion I do my best to poke fun at it's impossibility (Superstition).
Although for arguments sake, lets just say I'm doing my best to not remark and just enjoy 'it' while the good time lasts.

The cycle returns.

It started with a dressing change.
I'm not laying a heavy here, but I was in the middle of letting go my dressing change responsibilities, by getting Andrew and one of our longest nurses back into the process.

I could tell the hand was going to be an issue by the pressure of the bandage going on, but maybe going for a sail was more on my mind than trying to pull all that bandage off again and stress out my students.....
Unfortunately it wasn't too far into the evening before she pointed to her wrist, I ignored it and waited till the next change day as her irritation toward her wrist was short lived.

On that following change when the hands came out from the clothing and tube sock, a huge bump was pushing the bandages up.
I did what I should never do but it was a reaction to my instant guilt of not checking the area sooner.
I quickly reached out with my scissors and cut the top right through the bandage.
The moment I cut it, I knew it was a stupid move and had my repeating visions of the day I finally cut at a blister and take a chunk of flesh with it, but the bubble released and poured a few table spoons of fluid to the floor soaking the bandages.  Once I was able to start pulling the rest of the bandages off the sensitivity of the wound had her crying out in pain.
From then on it's been a wiggly painful experience with her.
Thankfully after a brutal night of listening to her cry every 20 minutes till 3:30am she slept and woke up a dream child.
We then went to a birthday party for our friends child all set up in their rear yard.
Most of the people there have a pretty good idea of what's up with Raquel, but I'm sure it's not in too much depth.
Ren was off at a bridal shower and within the first five minutes of Raquel using the small plastic slides set up on the grass, she does one of her funny little happy hops, folds her ankle on the grass and does a face plant with a whiplash effect of her face bouncing back up after the impact.

OH JOY,,,,

At first inspection I didn't see any of the giant patches of missing skin from across her face I expected so I figured I'd dodged a huge bullet and then picked her up to my chest to calm her.
Clearly one can imagine the looks of concern I was gathering from the people close enough to hear Raquel belt out her pain and frustration.  I smiled as if it was just a grumpy kid with normal collagen levels whom had a little fall.  Of course this wasn't totally the case.  After a second peek she had a bloody nose and a bitten tongue.  The best part is I was wearing a white shirt so for the rest of the party I walked around with a blood/slobber patch on my shoulder.
Ren did eventually make it and it was nice to finally get a beer and two slices of carrot cake to quietly smooth out the bumps in my brain.

I'm headed off to Toronto for the Debra International Congress.  It looks to be a great line up of speakers and best of all one of our EB mentors will be there from NY giving a presentation.

I need sleep, but can't as thoughts of total chaos with Raquel are plaguing my mind, while I drink beer late into the night on Young Street.
Oh the horror.

I'm mostly fearful that having taken some time for Ren to take her own turn of testy/grumpy I'll be right back to sleeping in a tent.  Except this won't be the warm summery pleasure of sleeping down by the lake.  It'll be the under the cold torrent that washes us Westerners from Fall to Fall amongst mud piles and sawdust.

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