Merry Christmas - 2014

The fun thing about blog posts is that you can be completely self-indulgent.  Where else can you so blatantly be "all about me."

As we approach another Christmas I saw a picture from the Stollery Children's Hospital showing all of the preparations for Christmas morning.  The "Beach" is the play area on the 4th floor which was jammed with presents and all of the other items that will be distributed to the kids in the hospital on Christmas morning.  It really is Santa's workshop.  The amount of effort put into this is truly amazing and it does really make Christmas special for families who are unfortunate enough to have to spend Christmas in the hospital.

This image reminded me of our Christmas at the Stollery.  Our Christmas wish was very different that year.  We were waiting for a heart transplant and it would have been amazing to have received our donor heart on Christmas, but it was not meant to be.  In fact Christmas Eve we learned that we had been offered a heart the night before but it was too large for Russell by the smallest of margins and it went to another child instead.  A child who happened to be at the next bed.  Our frustration on that do was very evident.  We were especially thankful to a special elf who spent time with is on that Christmas Eve. That special elf was Russell's Berlin Heart brother who was also waiting for a heart.  It was hard to be frustrated or angry when talking to someone who had the exact same issue.

To all of Santa's Helpers at the Stollery who are working feverishly this Christmas...I wrote this note below.  I hope you enjoy!

'Twas the Night Before Christmas

'Twas the night before Christmas, 6 short years ago,

Where we found ourselves, far from our home. 

I remember the cold that memorable night.

As our tiny boy, was far from alright. 

In the Stollery's care our boy stayed in good stead

His heart beat held steady with a device by his bed.

Our future uncertain, our outcome unknown

A new heart for Christmas; our impatience had grown.

Our journey had started three months before.

His heart fell ill and could not take anymore.                           

My 8 week old boy's heart was nearing the end.

His heart was sick and could not be mend.

ICU and hospital our new home became

A heart for a transplant became our new aim.

The days turned to weeks and our fate seemed so grim.

The watching and waiting were doing us in.

One offer, then another; not quite a right fit

Could Christmas bring that one special gift?

Christmas day came and went, our gift did not come

Another day had come and gone; unanswered prayers to some.

 

One day passed and then another, an end not in sight

We doubted and fretted; would our boy win this fight?

But unknown to us the stage had been set.

In a city far away in the Pacific Northwest.

Another young boy was clinging to life.

A story filled with sorrow and unfortunate strife.

The stage was now set; a decision was made.

A call of compassion and plans were well laid

Early that morning just before the New Year

A heart had been found; joy replaced fear.

The waiting was over; a new chapter began

Our gift of new life was all part of the plan.

As I think of this time and memories so fond.

We stop and remember my son's kindred bond.

A selfless choice, by a father and mother.

A new beginning for us; an end for another.

At this time of year I remember our plight

And our special gift that ended our fight.

Our Christmas wish to one and all.

Is of joy, and peace and thanks above all.

Merry Christmas from Donald, Susan, Nicole, and Russell

A Day in the Life of a Patient Advocate

For the most part our life is routine.  We go to work, we come home, we get groceries; its all very normal.  However, there are symptoms that things aren't quite so "normal."  Whatever "normal" means.

As we fetch groceries we park in the handicapped spot.  I'm sure we get the evil stares from people who see a family with young kids using a handicapped spot.  After all; things look so perfect.  Looks can be deceiving.

Those that know us; know we have two cardiac patients in our family.  My wife and my son.  My son will be celebrating his 6th anniversary of his heart transplant on Dec 30th.  Thanks to modern medicine we can lead a relatively normal life.  Relatively.

I find myself routinely taking someone to medical appointments or on the phone with the pharmacy.   There always seems to be something going on.  I am a patient advocate, not by choice, but by necessity, but what does being a patient advocate mean?

Patient advocacy is another term that gets bandied about in  medical circles without a lot of real understanding.  We talk about patient engagement, family centred care, in similar terms.  They all sound good and have become the trend in health care policy.  All part of "politically correct" health care.  When people ask me what my thoughts are on these topics I try to give practical examples from my personal experience.

Today was patient advocacy day for me.

It started at about noon today.  I received a phone call from my son's cardiology clinic with my son's blood test results.  He gets blood tests every couple of weeks to monitor the level of anti-rejection
in his system.  We have been having issues the past couple of months maintaining his levels.  This is odd seeing that his levels have been rock solid steady for more than 5 years.  In discussion, with our Doctors and discussing all of the potential issues we suspected that we may have received a bad batch of medication.  It is unlikely; but possible.  We got a new batch and we managed to get things somewhat stable.  Today, we encountered the same strange levels that we encountered almost two months ago.  Could we have received a second bad batch?  That seemed truly unbelievable.  Again, we discussed every possible explanation and came to the same conclusion.  Bad medicine.

For the second time we had to rush to get a new batch of medicine in time for the evening dose (My son takes his med twice a day.)  This time we wanted to get a new compound made at a different pharmacy.  Despite our best efforts we would not get a new batch until the next day.  Our son would miss two doses.  Not great news.

My first question to our cardiologist was a question I have used many times before.  "On a scale of 1 to 10; how worried should I be?"  After that discussion I felt a lot better as I was re-assured that this was a manageable situation and that, although not ideal, it wasn't the cataclysmic apocalypse that i might have feared.  My second question was how could we get medication to my son and not have him miss two doses.  I explained that if my son were sick and I presented at Emergency, the hospital would be obligated to provide his medications if we had forgotten ours at home.  I asked if there was any way we could get the med from the hospital.  I would even agree to admitting him to hospital if it would satisfy hospital policy.  I really like our cardiologist and have a tremendous amount of respect for her.  She realized that missing two doses was not an acceptable scenario to me and she also realized that admitting us to hospital or going to Emergency would be a huge waste of hospital resources.  She left me in the clinic waiting area and called the hospital pharmacy and asked if they could make up enough medicine for a couple of days; to ensure we had enough med until we could get our medication from our community pharmacy.  We had a small batch of medication in about 10 mins.

The story I have shared is an experience we have had many times.  I have had to advocate on behalf of my family on many occasions.  Patients cannot sit back and expect the "system" to meet their needs.  The process has to be interactive.  There is also no way I could advocate for my family without educating myself.   Through every experience I have had in health care I have learned and I try to apply that knowledge when I support my family and how they are cared for.

This was just one day in the life of someone who the health care system has become an integral part.  I live in constant fear of how others are able to navigate health care because I know many people do not have the experience or support to effectively advocate.  Every patient whether they be 8 or 80 need effective advocates to help support them and either help them be their own advocate or advocate for them if they are unable.