Monday, September 17, 2012

This years International Congress

Just back from the Debra Congress in Toronto.
I was able to split and shuffle dressing duty to Andrew and nurses while away.

Of course I was very nervous and was told everything went well without hitch.
Upon seeing Raquel this morning for the first time since last Wednesday she peered at me in disbelief and basically turned away and hid her eyes.  I did get a little smile while I tried through waving arms to get a kiss, taking the defensive karate chops off the forehead and chin.  I did eventually get to place one, but with was difficult with her dancing like a butterfly and bobbing to and forth.

Yesterday she took a few falls, so her face and elbows aren't looking that hot.  But what's under the daily preventative bandaging is what concerns me most and there I'm told remains perfect.  We'll see today.

Sitting through the Congress was very interesting.
It was geared slightly more toward the patient and front line care giver than I thought last year in Groningen was.  I'm not sure if that's a good thing?  I'm still struggling with what these congress' purpose is.  I look at the mission statement and can't figure out if it's science or care?
 Mostly I quietly observed and listened then got excited when an interesting conversation broke out on the direction of where things should go and what was being done correctly. 

The one time I did speak out in private conversation to the COO John Dart about the current writing of the Best Practice Guides and the inherent overlap of information due to the systemic variables of EB and all it's forms, I was left to feeling I'd best keep my ideas inside for the near future.  It's not that my idea was rejected, it's just that maybe it's uselessly ahead of it's time as much of the work has yet to be done and keying it all together into a singular form being a rather monumental task.

Having listened to the Doctors and nurses in the midst of writing the Complex pain, Nutrition and Occupational Therapy Guidelines just getting to where they are seemed difficult and time consuming enough let alone have to relay to one another where each of them were at that time and how to overlap and key into one another is clearly impossible at this stage.

I just hope once all these guidelines have been completed within the next few years that the second or third rewrite, Debra International can have them bound in some logical way.
The disease is just so unbelievably complicated as one starts from nutrition and branches out toward everything else and if one fails then it will invariably have consequences further down the line.

Confusing, yes - I digress.

What was amazing is the near cohesiveness of the Doctor and national groups.  I kept talking about divergent philosophies as it's clear many ways to work and make people comfortable with EB rely on the immediate care group.

Eg.  While sitting in on a nutrition workshop on the final day I spoke up about Raquel.
A Russian man was gathering information on G-tube care and best manner in it's placement.
The topic bantered around a bit till the question of what can go through the peg (her belly port).
Currently Raquel only gets Pediasure (a total nutrient concoction to meet her growing needs), I would very much like to get ourselves a blender and start mashing up our foods and feed her that way.
I've had some resistance from our nutritionist as to how complex Raquel's mineral and vitamin requirements are and the importance of maintaining this balance.  Plus I'm lazy to add another regime and time consuming part to her care.  Isn't it enough that we are constantly balancing her pain meds, with bandage requirements, wounds and total blister prevention attention to keep her safe..............

In any case, the UK people suggested that putting natural foods through the G-tube was possibly unhygienic and not advised, but the US people suggested that hundreds of people do do exactly that and it hasn't been an issue in most cases.  In fact as long as a good plan was created that it was advisable.
Of course I want to try it, but I'm somewhat nervous.  The UK nutritionist did say later once I showed photos of Raquel that it was clear we were on a good path of hygiene and that she did think we could try. 
But at it's core this type of divergent philosophy isn't just there at nutrition, it's at wound care, complex pain (ie. gasps of telling people Raquel has had a steady diet of Morphine although the Dr. Goldschneider did go on at length this year about it's advantages), dietary (ie gasps of people when I suggest Raquel only takes possibly 3-10% of her food through her mouth) etc.....
But then when the opportunity allows I'd show this video of her hands while sitting during a dressing change..

Or this full body shot sent via text from Andrew the other day of her standing in a tub with body sturdy and virtually unaffected with blisters and wounds.

Zero collagen I'd inform them.  As these shots highlight her pain, nutrition, wound care, clothing (Derma Silks) are clearly being met due to the obvious overall health of this little princess.

I did see in some eyes that this can't possibly be the case (zero collagen), as in some aspects this flies in the face of years of teachings and the various formats taken in the care of EB.

Anyway, despite all this, one can not question everyone that presented and witnessed this years Congress their unwavering devotion to the cause and that these forums are absolutely neccessary to be able to share ideas, therapies and techniques.

As a parent and a Board Member of Debra Canada and as the Adviser to the Medical Assistance Fund I'm doing my best to pick, question, and move through the evolving information and procedures to best care for my daughter and open up the lines for whom ever else is interested and in need.

Support your Debra within your country.
If you work or own a large company, please suggest to guide your dollars open for charities toward the Debra groups or become a personal member of the Debra Organizations within your country and our umbrella Debra International.

I understand in many cases companies send money through the United Way.  If so talk to your accountant and please advise United Way to send a portion to DEBRA.

There are many things need funding such as the Best Practice Guides as well as the researchers who are working for various treatments and here in Canada fulfill the many shortcomings of our healthcare system and give the EB sufferers the equipment and procedures they require from this extremely debilitating disease.

Yeah I know.  Raquel looks perfect, but trust me the imagery and case studies I was exposed to during this congress would shake you to your core.

In the coming days I'll link some of the speeches and workshops I found interesting as they are or will shortly be linked on the Debra International web site.

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