My Trip to Edmonton

Going to Edmonton is a bit of a strange experience.  It brings up lots of emotion; good feelings and bad.  When the Stollery called me, about a month ago, with an invitation to come to a retreat for the Pediatric Cardiology department I was really unsure what this was all about.  It brought up lots of questions.  What was the purpose?  Who was attending? Why me?

As I learned more about the day, I found out that between 60-70 staff would attend the day and that 6-7 parents were invited.  The agenda for the day seemed directed at staff and this brought up more concern as to why parents were invited.  To get ourselves organized we, as parents, with help from the Family Centred Care Council arranged a conference call about a week before the meeting to get our ideas and thoughts together.  This was a wise decision and a great experience to spend an hour or so talking to other parents and discussing things the Stollery does really well and the other things...not so much.  After this call I was still a little skeptical of why we were invited...being a little pessimistic; I thought it may just be a nice PR move and not really amount to much.

So last Thursday morning I was off to Edmonton.  The nice thing about this trip was that no member of my family was being admitted to hospital.  I piggybacked this trip onto a work trip.  I spent Thursday at Edmonton Mail Processing Plant and met our Postal Transformation team there.  This was a nice diversion from hospital issues and I toured the facility and met a lot of people who were just voices on the phone to me.  The trip was also very productive and the trip was starting on a good note.  In the evening, I spent dinner with my cousins and Aunt in West Edmonton where we had a chance to catch up on the events of the last two years since we left Edmonton.

The Retreat

As I stated earlier...I really didn't know what to expect from the retreat.  From the agenda, and seeing many of the names of those participating, I knew there would be lots of familiar faces and a lot of memories.  What input we as parents would have during the day was a total mystery to me.

I arrived at the conference centre and found my name tag and saw that all of the seating was assigned.  The 60-70 participants had grown to over 100.  I proceeded to my table.  Of the 8 people at the table I knew 4 or 5 on a first name basis.  This would be a recurring theme throughout the day.  All of the tables were setup so that you would have a Doctor, nurses, Techs, social workers, and child life workers sitting together.  No clicks.  The parents were also spread throughout the room and did not sit together.  The day began with a parent who made a presentation with input from all of us parents.  We had provided pictures and our own stories for her presentation.  She told our stories and made a strong case for parents as advocates for their children.  She, very candidly, challenged the hospital to include parents as part of the team and that their success was our success.  It was an excellent presentation.  This really set the tone for the entire day.

As the day continued; we had three breakout sessions where we broke into small groups to discuss three prepared topics.  I was completely amazed at how many times I was asked for input on seemingly technical issues.  As an example, I was asked my opinion on the hospital's effectiveness in treating chylothorax.  In fact, in many situations I found myself carrying the conversation and providing a perspective from a unique point of view.  I was totally amazed.  As we broke for lunch; some of us parents got together and shared our experiences from the day and I found I was not alone.  Many of the other parents were being peppered with questions just as I was.

At each break...there was constant stream of people who came up to me and asked about the rest of the family.  No one had any idea that we were coming and especially me being from Winnipeg.  Being from Winnipeg, we have had no reason to come back to see the staff...so most of the staff only remember us from our hospital stay.  It was also really nice to have some long chats with a couple of people we got very close to when we were in hospital.

The day was emotionally exhausting.  So many memories and so many familiar people.  I saw the staff in a completely different context.  The cardiac program in Edmonton has grown so much; I really saw a group of people who were struggling with a program that has outgrown itself.  From my own professional experience I know how difficult growth is.  It is extremely challenging and pushes the organization to the breaking point.  I saw a different side of the staff.  A group who want to take their department to a whole new level but they have no idea how to get there.  I heard so many questions that indicated to me how much they want to do better.  We identified a lot of weaknesses and challenges while validating a lot of success.  All in all...a very amazing day.

What becomes of this day is up to the department.  My understanding is that this group of people has never met like this before.  I certainly hope it isn't the last.  I strongly feel that the parents were certainly heard.  The one thing I think became evident was the parent's commitment to the program.  We are important stakeholders in the program and will certainly participate and assist the program whenever we are asked. 

I spent Saturday visiting some of families we had met during our hospital stay.  It was nice to catch up.  Some doing well and others in some very challenging situations.  During the entire trip I did not actually enter the Stollery...our conference was at an off site location.  As I left Edmonton, I took a quick walk over to the hospital; walked in the doors and promptly walked out...not having any reason to be there.