Wednesday, February 1, 2012

Team Meet

Raquel and I had a meeting with our care team and three of our steady nurses.
We went over many aspects of her care and talked about where other things might go.
It was interesting thinking about the many things I learned or was opened up to on my trip to the EB conference in Netherlands.  I found myself going back and digging up parts of a conversation I had with a Dr from Chile or a topic hashed out with a wound care nurse from Groningen, or aspects brought to light from our deep knowledge base provided by our new friends in New York.
The trip has proved time and time again to be an invaluable resource.

So much so, that I'll be digging up a few emails from Doctors in US that will help with Raquel's next procedure.
The dreaded dilation of her esophagus. 
It was first decided that they drop down some die to check out where if any (I'm not a betting man, but I'd put a pair of my skis up for it that she has some rather severe points), then if there are some problem strictures they'll go in and open them up.
We talked about how it's done else where, yet how rare EB is in Vancouver the Doctors haven't had any experience with putting the bag that's supposed to push out her possible esophageal strictures from the G-tube.
Thus avoiding the dreaded - top entry.
We've played that game before and it was terrible.  ie when the G-tube was originally put in.  She's not going anywhere this time till I know they know what they are talking about and will do the procedure without hitch.

After a brief interlude with Raquel. 
She just woke for her midnight howl.  What is she really?
Either way it was a loud thrashing fit of discomfort.
I knew it was coming and I even predicted it today at the meeting.  Except I said stupidly that we were approaching our pre-Christmas bliss phase of no blisters and general content and sleep for Ren and I (oh right Ren was in Europe sleeping well).
Ummm, no!!
She was really pissed tonight.  Usually we wait and listen to how loud or frequent her cries are.  Is it the mad staccato or violent growl or the whimpering cry for attention.  The last being her smallest chance for attention.  This type of cry only works with Grandma and her nurses, Ren and I are immune to it.  Although when she adds Daddddiiiyyy, I can't help myself.
This time it was obvious, get in there quick.  Just as I was sitting down on the couch I received the back of her skull in the chin, uncomfortably cracking my teeth together and giving my jaw a good upper cut.
Nevermind the screaming baby!
It's those moments where I can feel the anger and the "FK EB" chorus singing real loud. 

Dammit, she's still at it.  These are the sad sounds of 'why me?'.  Not the type of cry where I have to intervene.  The difference being, she's had Advil, Morphine and an anti-histamine since our last encounter.
It's so frustrating thinking we were headed back in the right direction then the potential of what may have happened in the last hour turned that boat back down the rapids.

Add these uncomfortable thoughts to my sleep.
Did she get one on her head from my jaw?
Did she get one under her arm from my forearm attempting to keep her from lunging off the couch sideways after the blankets had gotten too knotted up and adjusted to be of any use?
How fast will they grow, if at all?
Will there be the bloody blister or the water balloon blister?


I'm just stressing myself out writing more.
I'll keep to myself what couple comments at the meeting rubbed me the wrong way.

Anyway, she's good, she's bad, she's got f'n EB!!!!

This is Raquel saying, "no, you may not re-bandage my hands". 

Raquel's pie hole.

This is likely the area she was hammering with her feet due to "the itch".

and the other side due to "the itch".  I can only assume.  But she was flinching as she was initially drifting off to sleep.


  1. Hey Ryan, its your most loyal reader Kourtney is having a dilatation done on the 16th of February. If you want any advice you can always contact me. We aren't coming in until then but I would seriously meet you guys somewhere where we can talk. Please don't hesitate to contact me. Kourtney has had 11 surgeries and really understand how frustrating they can be!

  2. Aw, sweet baby. Praying for your precious daughter. We all hate eb. What an awful disease. It always breaks my heart to see these adorable children and knowing the pain they endure every single day. Hang in there sweet family. Love and Peace Leah's Nana