Sunday, March 31, 2013

Easter Egg

The bunny lives.
Despite my efforts to lay out a bunch of leg hold traps I didn't catch that pesky rabbit who drops scads of chocolate all around my yard. I was sure last year we ate him.
Oh we'll at least the kids had fun. Next year though, I'm gonna get the little fury monster.
Notice Babi's Easter Egg basket made from recycled Moja coffee bags
Too bad I only let Raquel lick the chocolate she was so happy to find.
Somehow like Santa the Bunny knew what type of toys to lay for Raquel.
Coco's haul.  Too bad her dad ate 3/4 of it.  The rabbit must know I can't stand white chocolate or it mixed with raisins in order to leave her with a larger longer lasting stash.

Monday, March 25, 2013

Debra Broomball Fundraiser coming quick

Lots going on and Raquel is looking good for a happy time up Grouse.
I'm sure she'll be chopping at the bit to go out and show everyone how to play.
It'll be difficult keeping the broom out of her hand I'm sure.

Coco and I were off for a big ski race of hers this weekend and Ren home alone with Raqu would send updates regularly.
First dressing change Ren ever put in too.  She seems to think her and a nurse will take over every Friday. 
Hmmmmm we'll see. 
There is blood coming through a couple bandages at her feet and she had a tough night.  I hope I don't freak when I pull apart the dressings come dressing change time.

Anyway, Raqu tells Ren one night while she was missing her sister (not her daddy) that when she grows up she's going to ski like Coco and then dances around making shhh shhh shhh sounds waving her hands in a descending motion.

YIKES!!!

How does that conversation go down?

"No Quelle. You can never wear ski boots because the pressure will rip off all the flesh on your shins and feet!"
"No Raqu. If you fall you'll smear off all the skin on your arms or legs."
"No Qu. I'm worried the seat on the chairlift will push all the skin at the backs of your legs."
"Raqu, NO. I'm worried the helmet will shear the skin off your neck and chin."
"NO. I'm worried someone will crash into you and smear all the skin off any point of contact."
"NO RAQUEL!!  I'm just F&^%ing worried."

Of course I still have images flying through my head of a chariot styled racer that some of the adaptive athletes use with roll bars and major padding. Where she won't require poles just upper body movement to direct her decent.  This version still has me tethered to her at all times, but at least the idea is out there.  Skiing as it is typically seen for my little Bella just isn't the shh shh shhoption.

Back to Broomball.
Anyone not registered for the event, do so.
Even if you aren't going to play, register anyway and come up for the fun.
Or register and be a no show, probably the only time I'll have the patience for a no show.
I think those from Alberta, Ontario or Van isle can be let off the hook.

Register here





Friday, March 15, 2013

So it ended

Not an eye ball has been seen.
Like the cruel clockwork of EB.
What was perfect is now some sort of suffering.
It's noon, I'm home for lunch and Raquel is crying with the careful eye of nurse.
Last night had an hour with child in discomfort and a pillow insulating the higher pitch shreaks from running down my spine, while Ren sat patiently with Raqu on the couch for our perceived cocktail on Raquel's pain or suffering needs to take effect.

Now we discuss what's next.
Eyes?
Sight unseen blister due to rough housing with Coco & I before bed last night?

That's the hard part.
To play or not to play?
Have Raquel take part and risk injury over fun and sweaty monster rough housing or be safe and tell her to go in the corner and wait till we're done having fun?

Of course as I spend many summer evenings tracking down Olympic cyclists times down our mountain trails, (don't thank Strava - but not up the trails) the general regard for doom aparently rarely crosses my mind.
Raquel joins in and we have this, grumpy child cuddled in a ball for hours on end.
I don't think I'm to blame, but a dressing change and some pain meds will tell.

The ever lasting joy of EB.

Thursday, March 14, 2013

Perfect

I think it's rare of late, but there is hardly a mark of open skin on the entire surface of Raquel's body at the moment.
I cut one small blister yesterday on her finger, but other than that everything is great.
She's super happy and full of beans nearly every time I see her.
It's terrible but every time we stop and reflect at how great things are going, she either wakes up with an eye issues or takes a serious tumble the next day.

Which of course reminds me, yesterday I caught Coco helping Raquel up onto the kitchen counter so she could have some tea.
Coco pushed Raquel's stroller to the counter, locked the wheels and Raquel was standing precariously at it's sharp edge trying to find something to get a hold of, to pull herself up.
I was in disbelief at what they were attempting, as in an instant I had visions of Raquel peeling off her entire belly front as she slid backward off the counter on the hard 90 degree corner then backward to the floor on her back smearing off an even bigger area as she bounced.
Forget that she'd for sure had a concussion from such a fall, if the stroller didn't break her fall or add various skin smears as she hit this and that to the bottom.

Problem was if she actually made it up she would have still had to make it across the sink to where the kettle took refuge in the far corner.

I have to admit, below the deep "are you guys insane, what are you thinking?!!!" I liked the team work and conversation that must have taken place for Raquel to talk her older sister into helping on such hair-brained idea.

Things to come???
My dark imagination can only fear...

Of course this is my soap box to brag about Raquel when I can, but I've noticed that her grammar is fast approaching her sisters and mine for that matter.  haha.

It's rare when Raquel speaks that words are placed in a flipped order or mumbles her speach out of recognition.  I keep saying this to our nurses, but I think this is their doing.  Everyday she gets great one on one with an adult who doesn't talk baby talk and converses with her all day long.  I see that this is paying off big time.

Anyway, all is great!

hmmm, maybe not.
I just hope the bandage supply company sees Raquel's silks as necessary as any of her bandages already covered.  After seeing how well she's fared with her torso and appendages less her elbows and knees it would be very very difficult for us to once and a while have to dress her in fibrous (stuck in wounds we don't have to wrap), sticky, bacteria laden cotton!!!!

Friday, March 8, 2013

Clockwork Orange

This morning's hospital visit was one that we've been waiting for a very long time.
For the most part we've got Raquel's pain meds figured.
She still has dressing changes where she shudders in pain, screams and fights my every move.
Especially when her feet meet fresh air and prodding to pick at blisters or scabs my developing OCD is pushed to clean up.  Considering her feet and hands are under 3 layers of bandage and two pairs of socks the sensitivity must be crazy for her with every touch.

We discussed her basic morphine regimen and how we were under half of what can be administered her weight now.
I think we've still been able to handle things, but for those moments that seem to pop up every few weeks.  It would be nice to clear my involvement from her future association of pain and suffering. We discussed Midazolam and Fentenol as either amnesiatic and or fast acting knockout drugs so that the difficult procedures can be done with out battle and further effect to Raquel and our future loving and trusting relationship. Basically I'm tired of getting her mitt in the face when she knows I'm coming for a procedure.


Other than a break through morphine bump at dressing changes Raquel mostly gets distraction techniques and involve as many elements as needed.  It was explained that this is never a constant and like what goes down on our changes things go often go sideways till something finally works.  The result is Raquel and I can be at odds both yelling at each other to 'behave and sit still!!' me or 'go away!!' her, while whoever is helping grabs anything from the ipad to books, videos or music to be played in a frantic dance to either settle Raquel or me down.....

He discussed using certain repetitive relaxation techniques and gave examples of singing, songs or like examples how athletes visualize courses or events.  It would then be a way in which we would prepare and hopefully sidestep our suffering on most occations.  This type of technique can also be used to heighten/quicken the effects of the chemicals we're giving Raquel.

He also exclaimed how people feel better within minutes of taking an aspirin, when in fact it takes 30 minutes to metabolize in the stomach.

Play with the brain, basically.

I have to admit I lost a bit of the meeting to fantasies within my own head.  It couldn't be helped, the doctor brought up the prospects and advantages of hypnosis or 'guided imagery therapy'.

For much of this part of the conversation all I could hear was Beethoven and scenes of gratuitous violence as poor Malcolm McDowell was reprogrammed to have a retching internal reaction to violence or Beethoven.
And of course one of the classic lines ever spoken in cinema that every married couple should have in it's arsenal for communication.
'No time of the in and out love, just passing through'.

Eventually I was able to come back to reality and carry on with the Complex Pain meeting among the three specialists surrounding Raquel, our nurse and me. 


I realize this post is in the middle of the promotion of a Debra Broomball event I am heavily involved in and it's sideways subject matter, but this is a blog about Raquel, EB and how we as a family are coping.  This type of subject matter is run through out in the last two years of blog posts.  The Debra aspect is something else, I'm using this format and readership to push people regularly checking in to this blog to go there.
Not the other way around. 

Wednesday, March 6, 2013

Play ball

Really?
Some of you don't know who Ferris Bueller is?
I guess not all are in their 40's and lived for the 80's weekend video (VHS) rental with buddies.

Just a reminder.
If anyone is interested in a team for broomball or want to just take part - do so soon.  Hard to say how quickly things will fill up.

http://www.grousemountain.com/events/debra-charity-broomball-tournament

Raquel has recovered from her tooth session nicely, although she is very moody.
I've had to scold her a few times for her attitude and waving mitts intent on catching me in the nose when I get too close for a kiss or a blister/scab inspection.

We went for a little walk to a bakery with Cordelia and Raquel decided to turn right while on my left when I had my eye on Cordelia to my right.  It all ended with a three inch blood blister at her knee cap.  I didn't get the hand dressing apart as she didn't seem to have too much forward momentum to do more damage past all her dressings - tomorrow will tell.

Point being.
If anyone takes a fall on the ice.  Don't think for a second you'll get any compassion from me.  Wear a helmet, elbow pads, knee pads and your camping thermarest wrapped to your butt if you have to, just don't make a scene like the screaming baby in the middle of Lonsdale missing all the skin on her knee cap this afternoon, cause she didn't get much from me either.  Just a tragic little lick of the chocolate chip poking out from the dangerous and abrasive oats and cookie parts that would tear her mouth, tongue and throat to pieces were she to take a real bite.

Tuesday, March 5, 2013

Teeth and the little plaque fairy

We finally had our tooth surgery.
I honestly had some deep anxiety over this time in children's. The worst case scenario was going to be long and nasty but instead the highlight was finding out the difference between tartar and plaque. Well, I still don't actually know the difference only that they are different.

The Doctor suggested there could be some serious decay and that if the back teeth were rotten she then gave various options of caps and drilling procedures. All of which were &$@?ing scary with regards to Raquel's EB. Plastic dams, suction, etc etc...  I made sure to tell the doctor, anaesthetist and nurses of our ER visit in year one when the entire inside of Raquel's mouth blistered off and collapsed upon her airway.

This was probably the most dramatic moment in my life. Baby gasping from breath but only sucking a shell of a mouth lining in and out of her esophagus while I held her in various positions hoping what ever blocked her airway would open. Thankfully this happened when Ren was peacefully enjoying an evening out with friends and no cell.

If Raquel kicks it on a similar event, its probably better for our marriage and loving longevity if Ren and I aren't in the room together. Let me rephrase, that Ren not be in the room with me. The big burly angry bear animal thing pushed deep under my sanity won't be pretty and like the werewolf likely wont differentiate from friend or other while panic overrides ration.

Anyway, I did my best to instil the fear in our staff, short of explaining the bearwolf monster thing lurking in the shadows. So in the OR we went and I was used very nicely to secure the IV and pulse lead to her hand. haha..  You think they'd let me in the OR if they didn't think I was super stable and of use???
I jest,
Slighty.
Although the grade school plastic surgeon and wound specialist without a PHD - me - has a great idea for next time that is bomb proof should the IV and probes be required to stay in place for a while past any surgery.
She had a healthy dose of medazolam and other fun dopey drugs that pushed Raquel to a deep sleep.
I left the room feeling very content by the team, we were in excellent hands.
Once in the waiting room I couldn't help but over indulged in crappy chocolate and was preparing for the long haul as three hours were booked for the operation.
Ren was around and I was doing my best to hide within my head and avoided her in the small waiting room.  It was good as she tracked down a free consultation by one of our doctors who just happened to walk by.  But just then the lead nurse walked in and exclaimed that we were done.... Maybe I had been in a sugar/chocolate coma for the afternoon, but it only seemed to have taken a half hour.
I have to admit when I saw her coming very dark thoughts ran through my head, even though her expression didn't display any sadness or deep compassion in the prospects of life and death conversation.
No intubation.
No cavities.
No plaque.
Just lots of tartar and a little staining from bacteria.
She had a high PH in her mouth, which we were told is better than an acidic mouth.
It was perfect doing a dressing change with a 100% compliant child. Unfortunately there were no difficult areas to deal with that Raquel battles me relentlessly with. Not that I ever want any, just would have been nice to have that team on board for the help.  As we wrapped I had a captive audience of Doctors and Nurses so I gave them a refresher course in EB and of course told them how wonderful Raquel is.

It's 10:30pm and Raquel is still up after getting absolutely hammered with drugs much earlier in the day. She's whiny and grumpy in one flash then pleasant and goofy the next.

In fact she's acting like a total pain in the ass and refusing like 80% of our nights to go down easy.
'Little Creep'!!!!

Success, all back to normal.

Although we are still waiting for some Collagen 7 please!!!

Bueller?
Bueller?
Bueller?

Saturday, March 2, 2013

Story Time

Raquel's new development is that she has sit downs and tells stories.
Her first story was quite simple.
'There was a Mommy princess, a Coco princess, a Raquel princess, a Babi princess, a grampa princess and a daddy princess.'
To a slightly more complicated end.
There was a monster.
Jacob hit the monster
and the monster is dead.
Num num num.
All done.

Some how in what takes moments to read actually is spoken in her language as if a grand fiction novel. As if 400 pages of intrigue, depth of character and climax are spoken leaving her audience crying in fear and praise for our great hero Jakob's triumph over the bad monster.