Saturday, February 11, 2017

2016: The Year of "the Donald"

I haven't been posting a lot lately.  There are a lot of ideas rolling around in my head and I've started writing down somethings but for some reason I haven't been able to complete some of them.  I hope to get that resolved in the next few weeks.

To give you an idea of how behind I am; I am writing a retrospective of 2016 in the middle of February.  Let's just say I'm glad I have no one putting me on a deadline.

2016 was quite a year for us.  Plenty of highs and lows.  That seems to be a norm for us but 2016 overachieved in this regard.  It is amazing that a year ago we were facing two very stark realities.  Susan was in the midst of being referred for open heart surgery and we were only weeks away from heading on Russell's Children's Wish trip to Florida.  The impending surgery certainly provided an obvious source of stress and concern but the Wish Trip also provided another kind of stress.  How was Susan going to manage the trip in her condition?  There were lots of questions.

Work was also providing some significant challenges.  With the federal election in late 2015, my project was suspended indefinitely.   In January of last year the axe began to fall.  Several of my colleagues lost their jobs.  There was a lot of concerns that more could soon be gone.  I could very easily have been on that list.  Job security certainly hasn't improved since then.

In all of this chaos and uncertainty we proceeded to maintain the approach of putting one foot in front of the other.  I think we have certainly learned how to handle uncertainty in the past 8 years.  However, it is still a huge weight and it is easy to let many of life's challenges get the better of you.  We are all imperfect and fallible.  We are not super human.  At times there are times you have to throw up your hands and say you can't do it alone.  We had no idea at the beginning of 2016 how things would unfold.  Looking back; how things came together was really quite astounding.

In the midst of all of the things going on in our family, there were many tumultuous things going on around us.  We had a provincial election going on in the spring, of which I was involved like I never have been before.  In the states, one of the most vicious and divisive election campaigns was in full swing and would dominate the news the entire year.  It also became evident that Brexit would also have a significant impact on how we looked at our position in the world.  2016 was an amazing year, not only for my family, but for the world.

As I think of 2016 and the events that took place it would be easy to be pessimistic about the future, but I am not.  Each day I have been given with my family is a gift.  Yes, we have challenges but over and over I have been shown that all of these events do have a purpose.  I was reminded of this a couple of weeks ago at sunday school.  Part of the discussion surrounded James Chapter 5.
When I read it, it hit me like a lightning bolt.  I knew this passage well.  It immediately transported me back to the Stollery Children's Hospital.  As you walk into the Pediatric Intensive Care Unit, just to your right, is a quiet room.  In that room hangs a print. There is an inscription at the bottom of the piece that takes an excerpt from James 5:16 - "The effectual fervent prayer of a righteous man availeth much."
Spiritual Warfare by Ron DiCianni

I suppose many don't put a lot of stock in prayer...but that portrait meant a lot to me at a very critical time in our lives.  It also prompted me to look up the verse to get some context.  The entire text provides so much more and I think it is something we should remember when we think of all of the unrest that took place in 2016 and as we embark on a new 2017.

James 5:13-16
13 Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. 
14 Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. 
15 And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. 
16 Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much. 

There is am immense amount of negativity and unrest is this world.  We have significant problems that many times seem insurmountable.  In all of the negativity there are many examples of things we can be very thankful for and take great joy in.  The verses above are a call to action and it's not just about prayer; it is about how we need the support of others, seeking forgiveness, and healing not only in the physical sense but the spiritual.

I know that many who may read this may not believe in God and may think of people of faith in less than redeeming terms.  One of the benefits of living in a free society is that we have the freedom to make these choices and live our lives the way we choose.  Many are skeptical when prayer is offered as a solution to things like illness, as described in the verses above.  The question inevitably comes up "how can a caring God allow such suffering."  I don't have an answer to that and no one does.  What I do know from personal experience is that as a result of my experience and my family's experience is that we are changed people.  You cannot go through what we have gone through and not be significantly impacted.

As I talk to many parents of kids who have passed away or live with medically complex conditions I hear the same message over and over.  "We wouldn't wish what we have gone through on anyone, but the people we have met and the experiences have taught us so much."  It is true that adversity does change us.  Ask any parent of a child with intellectual or physical handicaps what that child means to them and you will receive a response like no other.  These children teach us so many life lessons and give us wisdom beyond words.  The wisdom of lived experience.  That wisdom would never be attained without adversity.

In our case one of the greatest gifts we have been given is the gift of thankfulness.  I have two children who I consider miracles, and a wife I have had the privilege of knowing for almost 30 years.  Every day the four of us are together is something to be truly thankful for.  I can honestly say that in our case the "fervent" prayers of many have "availed" us much.

Thursday, December 29, 2016

Use the Force Luke: The "Dark Side" of Health Care

Are "Patients and Families" the "Jedi" of the health care system?

For many years I have watched in frustration as our health care system languishes in mediocrity.  We spend more per capita in this country than every country in the world except the United States.  However, our health care outcomes are in the middle of the pack of industrialised nations.  Monique Begin, a former federal health minister stated that we have all of the information to solve our health care issues but we have failed to implement (loosely paraphrased).  My question is how can this change come to fruition?

Without the Jedi, there can be no balance in the force
-  Lor San Tekka - Episode VII - The Force Awakens     

Bringing Balance to the Health Care "Force"

In May of 2010 I had my first experience as an advocate for patients and their families.  I was invited  to participate as a family representative to discuss the paediatric cardiology program at Stollery Children's Hospital.

I must admit I was sceptical going into the day. Were a few families invited to be token representatives?  Were we there to share an emotional personal story, and then be ignored for the balance of the day?  These are probably the concerns many patients and families feel as they attend these kinds of meetings.

What happened during that day changed my attitude on patient engagement.  The day began by the expected sharing of a patient story.  What happened next amazed and astounded me.  As the day progressed what started out as a "whisper" from the families in attendance began to gain momentum until a "clear and distinct" patient voice was heard.  We were equals...we were being listened to!  Recommendations were coming directly from families in attendance.  When we had breakout sessions we were asked to report back to the entire group.  Parents were seizing the microphone and conveying talking points on behalf of the health care professionals in their group.  It was a fantastic day and this is when I saw the impact and powerful role families could play in developing policy and being health care leaders.  I have been trying to recreate that level of engagement ever since.

Having had a glimpse of patient and family centred being put into action; I am spoiled.  I have seen what improvements can happen when the patient is truly considered first and foremost. Patients and caregivers need to be given authority to access information and make informed decisions.  I thought that the principles of patient and family centred care could be easily replicated, but I quickly found out that it is not easy.  That isn't how the health care system works.

"We'll figure it out. We'll use the force"  -  Finn
"That's not how the force works" - Han Solo
-  Episode VII - The Force Awakens     

The "Dark Side" of Health Care:  The Health Care Establishment

The Health Care Establishment as viewed by the patient
Photo : Courtesy of
Since my first foray into patient advocacy I have been involved in numerous groups and committees under the pretence of patient engagement.  The terms "Patient Engagement" and "Patient Centredness" have become health care industry buzzwords.  In may respects these terms have lost their meaning.  I am sad to report that many patient committees are carefully managed by the health care establishment.  They view patients and their families/caregivers as a group that needs to be managed rather than genuinely listened too.  Many times families are relegated to the "kids table" of the decision making process.  Health care administrators claim to be inclusive but are merely "checking the check box" of patient engagement.  Many times patients are not being genuinely listened too.  I have seen this far too often.  This is when I changed my approach. This is when I decided to use the "force".  I decided to use the patient story to make an impact.

"The force is strong with this one"
-  Darth Vader - Episode IV A New Hope     

The Patient Experience: The "Force"

As someone with a compelling patient experience, I would occasionally get asked to speak at meetings or conferences.  I was thankful for the opportunity.  However, there was no way I was going to let those opportunities pass me by without striking a blow for patient and family centred care.  I would get asked to share our patient story and trust me; I could get the waterworks started.  If I was coming to speak to your group you had best make sure you had a box of kleenex at the ready.  Just when I had the audience emotionally vulnerable I would make the case for how patient and family centred care made a difference for us.  How we work together with our health care providers and get superior health care.  The patient story becomes more than anecdotal it becomes theory put into action.  I started to make some waves and that was when I knew I was having some impact.

The next step for me was to get in front of the decision makers to state my case.  I was using the "force" to directly confront the "dark side" of health care.  The side that resisted change, that seemingly knew better than patients.  Powerful patient experiences are the conversation ender.  It's very difficult for program managers, section heads, and exeutives to pat themselves on the back when they have to stare across the table from someone with lived experience who has been a witness to their failures.  The political spin cannot survive that level of scrutiny.  My experience and the experiences of other families form a powerful narrative.  I am certainly not alone in this endeavour, there are many other powerful advocates speaking the same message.   The "rebel" forces were (and are) growing in numbers.

"The Resistance will not be Intimidated"
-  Poe - Episode VII  The Force Awakens      

Tempted by the "Dark Side"

Then a unique opportunity presented itself.  I was asked to join a hospital board.  I didn't think a lot about it at the time but this turned out to be a game changer.  When I went to meetings I was not the token family representative.  I was now a board member...a decision maker.  I could ask a question and (in my new role) health care professionals were "obligated" to provide the information.  This was a completely new perspective for me.  Being a leader in health care provided an entirely new perspective.  Now that experience on a lone hospital board has evolved into a position on a regional health board.

In a dark place we find ourselves, and a little more knowledge lights our way.
-  Yoda - Episode III Revenge of the Sith     

It would be easy for me to be passive and enjoy the ego boost that being on a health care board entails.  It would be much easier just to go with the flow and not make waves...but I can't.  I can't afford to as health care is not an occupation or an income for me.  Health care is a reality of me and my family.  The stakes are much higher for me.

"Do or not do...there is no try"
-  Yoda - Episode V The Empire Stikes Back    

Being on the other side of health care I have learned many things.  It has been an eye opening experience.  What I have found most compelling is that most people I have met and worked with (in health care) DO care a great deal about health care and the patients they serve.  Unfortunately, the system we have created makes change exceedingly difficult.  Difficult even for those who are at senior levels of the system.  In many ways we are a victim of the system we have created.  

After all that I have seen and experienced I still strongly believe that patients and their caregivers are our best opportunity to make meaningful changes.  We are at a stage of health care gridlock and patients questioning the status quo may be our best chance at meaningful change.  Through lived experience I have learned how powerful partnering with patients can be; if we could only be able to be true partners with our health care providers and finally change the discussion.  We just may be able to make the changes that so many people want.

Now that I am on the inside, perhaps I should be looking for plans to the "Death Star" so that we can finally destroy it.

Exploding Deathstar photo: Wired

Saturday, December 24, 2016

Christmas in Hospital: A Look Back

This has been an interesting year.  We got a chance to relive some of our hospital experiences in the summer which was a surreal trip down memory lane.  Several times this week I have been reminded of our Hospital Christmas 8 years ago.  Those were difficult times.  Russell was being kept alive by an artificial heart and we were waiting for an donor heart.  We were hoping for that elusive Christmas miracle.  Our frustration peaked on Dec 23rd and 24th when the young girl in the bed next to Russell received her heart transplant.  To make matters worse...Russell had two echos to assess him to determine if he could be the recipient of that heart.  The first echo showed that the donor heart was physically too large for Russell.  Apparently, it was very close to being a fit as a second echo was ordered and measurements were taken a second time.  It just wasn't meant to be and Russell missed his chance.  This made for a very sombre Christmas Eve.

It was times like this that writing was a very welcome distraction.  I hunted through my archives and found my blogpost from Christmas Eve - 2008.  It is really interesting to read some of these old posts and try to understand what I was thinking at the time.  I think I was obviously looking for a distraction.  It seems odd to compare a trip to the moon to our hospital journey, but we certainly felt like we were certainly in an alien environment and honestly it was nice to think about something other than "hospital world."

These are the kind of thoughts that go through your mind when you are a long way away from home and have been living on the edge for three months.

Christmas 2008:  Stollery Children's Hospital - 4C-ICE

Dec 24/08 - Christmas Eve
Posted Dec 24, 2008 2:03am

40 years ago on Christmas Eve, three people were in the midst of an epic journey that captivated the world’s attention and united the world in admiration of man’s accomplishment of space flight and man’s first journey to the moon. Those three astronauts, Frank Borman, Jim Lovell, and William Anders, addressed the entire human race from lunar orbit on Christmas Eve 1968. Realizing the magnitude of this achievement they were overcome with the desolation of the lunar landscape. In their address to the world they acknowledged a much greater achievement than the technological marvel of space flight but instead the grandeur of the creation of the heaven and the earth by an almighty creator. This trio of astronauts were the first to see a lunar sunrise and to see the earth from a million miles away. The experience must have been exhilarating.
As we also consider our journey of the last few months. We also marvel at the technological achievements that medicine and science have achieved through the Berlin Heart and ultimately through organ transplants. We consider ourselves fortunate to live in an age where our son can have a chance at life where only a few years ago that hope would not have existed.
Ultimately, we share the message of the crew of Apollo 8 and choose this Christmas to celebrate in a unique way. The following is the transcript taken from NASA archives as the crew of Apollo 8 addressed the world on Christmas Eve 1968 by taking turns the crew read from the Book of Genesis.

William Anders:
"For all the people on Earth the crew of Apollo 8 has a message we would like to send you".
"In the beginning God created the heaven and the earth.
And the earth was without form, and void; and darkness was upon the face of the deep.
And the Spirit of God moved upon the face of the waters. And God said, Let there be light: and there was light.
And God saw the light, that it was good: and God divided the light from the darkness."
Jim Lovell:
"And God called the light Day, and the darkness he called Night. And the evening and the morning were the first day.
And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.
And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.
And God called the firmament Heaven. And the evening and the morning were the second day."
Frank Borman:
"And God said, Let the waters under the heavens be gathered together unto one place, and let the dry land appear: and it was so.
And God called the dry land Earth; and the gathering together of the waters called the Seas: and God saw that it was good."

We too marvel at the creation but in different ways as these three astronauts. This Christmas we see the amazing creation of life. I have often referred to the day Russell was born as a truly “perfect” day. I do not know why we were chosen to have such a unique family. Nicole and Russell are our two miracles which have certainly changed who we are. As we wait for a heart, we know that there is certainly a lot in store for us. We take comfort in the knowledge that there is a plan for our family and that as we have been cared for over the last twelve weeks we will be cared for in the next twelve.
One thought I had while I was reading about Apollo 8, was the recurring thought of the climax of their mission. That once they had reached the moon...they still had critical task ahead of them. They had to return home. Like the astronauts, we know our journey here will not be complete until our family is once again ... home.
To all of you who have been such a great support these past few months, we say a huge thank you and Merry Christmas.

The previous post from 2008 was also very incomplete.  We did not get our heart transplant Christmas Miracle.  Just like the crew of Apollo 8 in 1968...they returned to earth and completed their mission on Dec 27, 1968.  Our mission to get Russell a new heart was completed Dec 30, 2008.

Merry Christmas All!

Tuesday, December 20, 2016

Managing Procedural Pain: Moving from Theory to Reality - Part 2

I wanted to follow up on my post related to Russell's Heart Cath.  My first post talked about all of our preparations prior to his surgery.  If you remember a year ago we thought we had a great plan as well and the results were not exactly fantastic.  Far from it.

So how did we do?  Now that we also have lab results back I can share that as well.

The lab results are all two thumbs up.  No indication of organ rejection.  All indicators are nil...nada...nothing.  Also negative for viruses which are a real concern for immune suppressed transplant patients.  So we are really happy about that.  Although we know Russell's health has been great...when you perform these tests there is always the anxiety that is associated with it.  It's nice to get a clean bill of health.

So the other big question was...with all of our preparation and worrying how did the day go?

It was a very interesting day and a very different experience.  At Pre-Admission Clinic we had a great discussion about the sedation plan and the anxiety leading up to the procedure.  We spent a lot of time on the anxiety issue.  Kids who are as medically "experienced" as Russell carry a lot of baggage with them when they go for these procedures.  Especially, given that this procedure has never gone very smoothly.  We (the Doctor, Susan, and myself) did a deep dive into Russell's chart and discussed why we thought things didn't work in the past.  Russell was present for this discussion, which I think is important.  Never underestimate what kids comprehend.  They may seem like they are not paying attention...but they are.

Our day started with our arrival at Children's Hospital at 6:45 AM.  The game plan involved doing the minimal poking and prodding when we arrived at the day surgery unit.  The day unit nurses would do basic vital signs and that was it.  We also utilized video games as a distraction to make the waiting a little more bearable.  That worked very well....thank you Minecraft.  When the time came to take Russell down to the Cath Lab we stopped at the waiting area and did not go into the lab. The cath lab is essentially an operating room with lots of unfriendly machines.  Not an inviting environment and obviously quite intimidating.

In the waiting area were several beds.  We got Russell comfortable on one of the beds.  The anesthesiologist setup monitors to keep track of Russell's vitals and then he prepared a cocktail for Russell to get him settled.  The Dr used an oral sedation to allow Russell to fall asleep with some pharmaceutical assistance.  Russell takes oral meds very well because he does it every day - twice a day.  Getting him to drink the med was very easy.  The plan was to give the med and just sit back, monitor his vitals, and wait for him to fall asleep.  The Dr told us this should take between 5-15 mins to take effect.  At 20 mins (and Russell still playing video games) a second dose was prepared and given.

Our son "the stoner".  Picture taken
20 mins after his first oral dose 
of Ketamine.  
The anesthesiologist commented that he had never given that big a dose to a child before.  Just another vivid reminder that our son is not the average patient.  He is extremely drug tolerant given his past medical experiences.  After dose # 2 was on board Russell started to show signs of being drowsy.  The anesthesiologist, with our permission, started the IV that would be used to administer the balance of the anesthetic throughout the procedure.  Russell went "out" completely calm and without any commotion.  This was a complete and total success.  However, this process was time consuming from beginning to end. We probably spent 30 minutes at this.  This is where I have to give the medical team, who were anxiously waiting to get started, a lot of credit for being incredibly patient.

So part 1 of our adventure was a success; he was out.  Now we wondered how he would react when he came out of the anesthetic.  This is where we got into real trouble last year.  Our anesthesiologist suspects that Russell may suffer from post op delirium.  Probably a result of his traumatic medical past and his age.  Knowing what it was, didn't make us feel any better but it was nice to know we had someone trying to understand what was going on.  Our Dr gave Russell an extra dose of med prior to heading to the recovery room (PACU).  The idea was to let him rest in recovery and very slowly wake up.  Wow...was that effective.  Usually, Russell is in the PACU for an hour and then back up to the day ward.  Not this time.  Russell was asleep for the full hour in PACU and was giving no indication of waking up.  Again, our medical team was extremely patient.  They didn't let Russell out of PACU until he was awake and we waited nearly 2 hours for that, and no one was rushing us.  In addition, given our esteemed status and Russell's reputation for waking up rather grumpy, we had a private room reserved for us in the PACU.  So our extended stay in the PACU was quite comfortable.

Russell was still fairly stoned when we finally got up to the day surgery ward.  It is sad for a parent to admit this but Russell was actually quite hilarious in his intoxicated state.  Because of the breathing tube that was in place during the surgery Russell's throat was a little gravelly.  In his intoxicated state he reminded us a of a belligerent little drunk.  I feel kind of bad now...poor little guy.

When we finally went home at 6:00 in the evening (after our 12 hour stay).  Russell still couldn't walk straight.  He got the 5 star treatment with a wheel chair ride down to our vehicle.  Even when we got home he was still very unstable or as Russell called it "wobbly".  By morning he was great and began running around like his old self.  He took the day off from school but by mid afternoon you would hardly have known he had been in hospital.  Kids are extremely resilient.

What did we learn?

Keeping in mind that this is our 8th or 9th day surgery it is a little frustrating to admit that after all this time it seems this is the first time we got it right.  Every year seems to have provided a new challenge.  We not only are dealing with a very wary patient we are also dealing with one who is growing up as well.  Kids change so fast as they grow up.  Every year when we do this we are dealing with a very different little boy.  He changes and our strategy should also change.  I don't anticipate this process will be remotely similar when he is 12 or 16.  We have to keep the US Marine Corp credo in mind "...Improvise...Adapt...Overcome."

We learned a ton about patience.  My advice to anyone going through any kind of procedure is to not be shy about asking everyone to slow things down.  Getting in a rush heightens anxiety and usually makes a difficult situation worse.  Our medical team was absolutely fabulous at taking their time.  We never felt rushed and that had a remarkable effect on us, as it gave us a chance to relax a little as well.

We hope our successful day is the beginning of a trend.  Gives us a lot more confidence when we face down our next procedure.

Friday, December 2, 2016

Nurse Found Guilty of Professional Misconduct

Carolyn Strom, a Registered Nurse who posted negative comments on Facebook, about the care of her grandfather has been found guilty of professional misconduct by the Saskatchewan Registered Nurses Association (SRNA).  The Facebook post described "sub par" care in the St Joseph's Health Facility in Macklin, Saskatchewan.  The staff of the facility filed a complaint with the SRNA.

Article Link:

Today we live in an era where health care administrators are openly seeking patient involvement and feedback regarding the patient experience .  It seems that the Saskatchewan Registered Nurses Association (SRNA) is taking a position that counters the principles of meaningful patient engagement, and patient and family centred care. 

As someone who has raised many concerns about my family's health care, I have had to face a harsh reality.  It is exceedingly difficult to be heard and more importantly nearly impossible to effect meaningful change.  As a hospital board member who has listened to numerous complaints and concerns, I sympathize with those who choose to go through the formal process of initiating a concern through patient relations.  The process is bureaucratic and exceedingly slow.  As a caregiver I have felt the frustration of not feeling you are being listened too (wanting to raise concerns) but without an effective avenue to do so.  I am embarrassed to admit it, but I have on numerous occasions used unconventional means to make my concerns known.  This is just harsh reality of a broken patient complaints system.

The story of Ms. Strom highlights an even bigger issue.  An issue I hear about from many health care professionals.  In this case, Ms. Strom, a Registered Nurse would have specialized knowledge of health care and is in a position to speak with some authority on her grandfather's care from the perspective of a family member and as a nurse.  This is a perspective we should be seeking out, and not trying to discourage.  I hear this complaint often.  Nurses, and in some cases Doctors, encourage me to "speak up" because I can say things (as a parent or husband) that they cannot, as they fear disciplinary action.  There is a great deal of fear among staff in health care that raising legitimate concerns can result in disciplinary action similar to what Ms. Strom is facing.

Relating to the specifics of the charges levied against Ms. Strom, I find it ironic that SRNA is accusing Ms. Strom of violating her grandfather's confidentiality.  As a family member, I believe she has a right to do that.   I routinely blog about the health care experiences of my family members, and I have the right to do so.  I believe there is a distinct separation from my role as a "caregiver" and the role I play as health care leader (as a hospital board member or a board member of the Winnipeg Regional Health Authority).  Do the rules change if you are an "RN?"  The basis of that question likely lies in the determination of whether "legally" she was posting comments as a family member or in a role as an RN.  The SRNA contends that because MS Strom identified herself has an RN that she is subject to the rules of conduct stipulated by the SRNA.  Labour law would tend to support that argument, as social media can be viewed as an extension of the workplace.  Having written social media policy, and referring to the policy in my own workplace it is common for employers to ask employees, when they post on social media, that they NOT use a pseudonym and clearly identify who they work for.  This is important so that comments made by the author can be put into context and there is no deception.  If Ms. Strom wanted to malign or attack the character of a person or an institution she could have easily created an anonymous account to do so.  I think this is an important point when you consider the intent of her post.  I think intent is a very important consideration in this instance.  This the question I often ask myself when I post something on social media; "am I being part of the solution or part of the problem?" 

Health Care in this country has many challenges.  We need much improved methods of identifying failures within the system.  I hope Ms. Strom's intent in posting her concerns on social media were a genuine attempt to try to raise valid issues.  We need many more people who are interested in solving problems and not trying to limit appropriate communication.  I hope this incident prompts SRNA to more clearly define its Social Media Policy and educate its members on how they can effectively engage in meaningful improvements.  My fear is that disciplinary action taken by SRNA against Ms. Strom will further discourage these nurses from raising valid concerns and that would be a huge step backward for engagement in our health care.

Sunday, November 27, 2016

Managing Procedural Pain: Moving from Theory to Reality

Tomorrow is the big day.  We are heading to the hospital at 6:00 AM for Russell's annual Heart Catheterization.  This is THE test we do every year to check on the function of Russell's transplanted heart and to do a biopsy that is used to check for any signs of rejection or coronary artery disease.  That carries with it it's own apprehension and stress.  The fear that something may be wrong.  Fortunately, we have had consistently good results in years past, and we have no reason to expect any different results.  However, the fear of the unknown does linger in the back of your mind.

The short term goal for tomorrow is to get through the day with the minimum amount of disruption for Russell as possible.  That has proven to be a significant challenge, and last year, despite our best efforts was an unmitigated disaster.  We're trying to turn that around this year.  For those who don't know what happened last year.  Here is a link to my blogpost from a year ago and a description of what happened.

Russell's Heart Cath - 2015

Susan and I have tried to get a lot more information on how to manage Russell's fears and anxiety.  This is challenging because Russell knows exactly what is coming and is quite knowledgeable in his own right.

Fortunately, we have a good team that has been very receptive to our concerns and have made many suggestions.  We have input from mental health specialists who have conveyed some strategies for dealing with the anxiety leading up to the procedure but we also have spent some considerable time at our pre admit clinic discussing a comprehensive sedation plan.   We had a good discussion about what happened last year and reviewed the chart and I think we have made some changes that should work better this time around.

The Challenges

There is a good deal of information available related to procedural pain pediatric patients.  Lots of good strategies have been studied and have been proven to be very helpful.  Reading some of the literature I wish we had some of this information years ago.  However, the important  thing to keep in mind is that is really important that you know your child and select strategies that you think have the best chances for success.

As an example, one of the strategies that many have become big proponents of is "numbing cream".  The idea is to apply a cream to an area of skin to "numb" the area so that your child does not feel a needle insertion.  Personally, I am not a fan of the product (for Russell).  The creams used usually take quite a while to take effect, and my criticism is that it heightens the anxiety of the procedure by dragging out the process.  Keep in mind, Russell knows exactly what is coming and he is also a little guy with a lot of anxiety.  For him, the numbing cream is just as traumatic as the needle poke itself.  The tried and true method with him has always been to get in and get out as fast and accurately as you can.  Absolutely, do not drag out the process.  I also know that some parents think using numbing cream is fantastic and have good results.  This is the importance of knowing your own child and using what will have the best outcomes for them.  My strategy may (and should) change for other children.  For instance, using a numbing cream may be a useful strategy if we were talking about my daughter, Nicole.  She has very little experience with any painful procedures and if we asked her I am sure she would be very receptive to using the cream.  In fact our pediatrician has used several distraction techniques with her and they have all been reasonably effective.  My point here is that you have to know you child and not be afraid to tell your health care providers what will and won't work.

The Plan

Our plan for tomorrow has actually been in place for a few days.  We've spent a significant amount of effort discussing this with Russell.  We are trying to a lot more work addressing his anxiety.  It's been a challenge.  He gets agitated when we talk about it.  Occasionally, we get a question.  Those are great opportunities to talk through the issues.  We're trying to get him mentally prepared.  We are acknowledging the process and his fears.  These are real and we want him to be able to verbalize how he feels.  We are also trying to reinforce his successes.  He has an amazing knowledge and he has been through so many of these procedures.  We reinforce these successes in which there have been many.  The limited discussions that we have had we have definitely tried to keep him included in the process.  He has a say on what happens.  Any bit of control we can give him we will.  I would have hoped we could have had some more input from Russell but we are very slowly working through his anxiety and we won't solve all of these issues in a couple of days.  We hope that Russell has a sense that he has been included in the plan and the we will be executing "his" plan.

What Will We Do Different this Time?

Last year at this time, we thought we had a pretty good plan.  It didn't go very well.  Some of the things we will do differently this year has included some of the mental preparation as I have already discussed.  This is what we will do at home to prepare.  Much of what will happen tomorrow is the plan we developed with the anesthesiologist, at pre admit clinic.  The input we have received has been really interesting.  In the past, we had requested pre-sedation, (benzodiazipines) which has not been effective with managing any anxiety.  We won't be doing that this time.  No pokes will happen in day surgery.  The IV will only be started in the operating room by the anesthesiologist.  We are trying to greatly reduce the poking Russell would have to do before the procedure.

The other key strategy change this time around is that we have discussed taking our time.  We will be in no hurry.  If Russell is upset, we will take time to get him calm.  Pinning him down to get something done will not be an option.  In the past, when we got to the OR there seemed to be a rush to get things done and get him "put under."  Not sure why.  This time we will slow things down.  We spend many hours waiting for Doctors and Nurses, I think it is only fair that they should wait for us every now and then.

Talking the Talk vs Walking the Walk

Tomorrow we will put all of the discussions and planning to the test.  All of the theories and speculation don't mean anything if they aren't implemented.  I've been fortunate to have had opportunities to discuss our experiences and what we thing works as it related to pain management and procedural pain.  I've been lucky to have input into research projects on the subject.  I guess tomorrow we'll find out if we know what we are talking about.

Monday, November 21, 2016

Review: Vital Bonds - The Nature of Things

Memories are the key not to the past, but to the future. - Corrie Ten Boom

Profound words coming from someone who survived a Nazi concentration camp.  Memories have a profound impact on how we look at the world and who we become.  Our lives changed on October 2, 2008.  What took place over those 6 months is difficult to explain.  Last Thursday, we came as close as we ever will to reliving our transplant journey.

CBC, through it's longstanding program The Nature of Things was given unprecedented access to the University of Alberta Hospitals including the Stollery Children's Hospital and the Mazankowski Alberta Heart Institute.  Territory we know very well.  The program chronicles the organ transplant experience.  It follows several patients, both the donors and recipients through portions of their transplant journeys.  The openness in which this is presented is quite astounding.  All of those who participated in this documentary, put themselves out into the public at their most difficult times.  The openness is quite remarkable.  I have placed a link to the program below where it can be seen in its entirety.

How Real Was It?

First off, the amount of insider knowledge we had of this programming was stunning.  Several of our Doctors were featured in the documentary including Russell's cardiac surgeon, and Russell's transplant cardiologist.  In addition, we recognised many locations in the hospital.  We recognised a lot of the subtle details.  The fish tank outside of PICU - the NICU - familiar signs - the rooms in which the family conferences were held.  It was so familiar.  Some happy memories that collided with some of our most awful recollections.  Seeing an infant laying on the operating room table, was particularly difficult to watch as I remember that like it was yesterday.  It was like we had rewound the clock 8 years and were back in the Stollery.  It was that vivid.

It was also amazing to see an infant child featured.  To have this strike even closer to home this was a family from Manitoba, just like us, who had left one child at home to take their other child 1400 kms away in hopes of saving their life.  It would not be surprising that we could see this family at one of our transplant clinics here in Winnipeg.

Tough to Watch?

An unequivocal....YES!  It was very difficult to watch but very worthwhile.  It was particularly fascinating to see a family go through the donation process.  A side of the equation that we are not familiar with but what we always speculate and wonder about.  I am very impressed by these people who chose to go through the process of donating organs.  After all, if there is something to be learned in this documentary is the life and death nature of the organ donation process and the euphoric highs and devastating lows that are involved for both donor and recipient.  A roller coaster ride of emotions that we were fortunate enough to be the beneficiary.

What was Missing?

It is clear that the producers of this program focused exclusively on the moment of donation and the moment the organ is received.  I think they did an admirable job and packed an hour long program with as much as they could.

The issue we (Susan and I) keep coming back to is that there is a compelling story leading up to the need for a transplant and then a lifetime of effects to deal with after receiving the donated organ.  All of those who fall ill and require a transplant will undoubtedly go through some very tenuous circumstance to get to that point.  The organ recipients are the sickest of the sick and endure numerous treatments and interventions prior to ever being considered and listed for the transplant.  The transplant process is completely out of their control as they have no way to determine when that "elusive" call may come with an offer of the donated organ.  The physical and emotional impacts are profound and will be felt for years to come.  In our case, our transplant saved Russell's life.  It also changed us as parents.  We are not the same people we were before.  Russell also has to live with all of the rigours that come with maintaining a transplanted organ plus he also has to live with the effects of the heroic efforts that were performed just to get him to the point where he could receive his transplanted heart.  Many of these realities he is just learning about as he is just a young boy just learning about his embattled infancy.

Yes...transplant changes people and those who care for them.  Perhaps, the subject of another documentary.