Transplant - 11 Years Later

Today is a very unique anniversary.

The days between Christmas and New Year spark many memories from our time in hospital with Russell. It is hard to believe it was 11 years ago. So much has happened since that frigid Edmonton morning.

We had just said goodbye to Nicole the previous night, as she and her Grandma boarded a plane back to Winnipeg. We were left feeling very empty with our family separated once again. We woke up that morning expecting another monotonous day at the hospital, but at about 8:00 am we were phoned at our hotel with news that would change our plans considerably.

The phone call where we were told that there was a donor heart available for Russell.

11 years later, it still feels like a dream and not quite real.

Susan asked me last night - after all of these years - how do I feel about the transplant? A question that is not easy to answer.

On the day of Russell’s transplant, one would have expected us to be overjoyed with high fives all around. Yes, we were very excited that the transplant would be a huge milestone, but we had been in the hospital for so long we knew the transplant would not be the end of the story.  To be quite honest, we were worried and scared.  

At this point in time, we knew Russell still had open-heart surgery to implant the donor heart and the recovery that went with it. We were petrified that we were so close to having a successful outcome that something might go wrong. We were not going to relax until the donor heart was in, and we knew that the surgery was a success. 

We never got that confirmation - at least not right away.

We got the call that Russell’s surgery was completed a little after midnight. We met with our surgeon, who did not have encouraging news. The operation was a success, but there were issues with the donor heart. He told us bluntly, “Be prepared for a rough night.”

The next 48 hours, we watched and waited. There were several anxious moments, but very slowly and steadily, we could see signs of recovery. The worst was over, and we could finally get past this initial hurdle, but there were many hurdles yet to come.

January 1, 2009 - 24 hours post-transplant

11 years later, we have many of the same feelings of apprehension and worry, but with each passing year, we have to look back at the many fantastic opportunities that “transplant” has given us and especially Russell. Russell is slowly figuring out his reality of being a heart transplant recipient. It is a lot for a little boy to process. This is a work in progress, but by outward appearances, he looks and acts like any other healthy little boy. He’s currently playing on the computer - playing video games. We consider it a privilege to worry about his screen time rather than his cardiac health.

Russell also keeps things very real. He is a normal little boy and is downright goofy. It is all of his silly antics that keep us on our toes. In the few moments when we have time to think about something like his transplantiversary - we just say, “Wow.” He truly is a “miracle.”

Happy 11^th Transplantiversary Russell

Dear Anti-Vaxxers

Earlier this week, we had an Emergency Room adventure.  In an attempt to keep our immune-compromised son protected from as many infectious diseases as possible, we make it a priority to get him vaccinated. Because of his medical condition, there are some vaccines that he cannot receive.  The MMR (Mumps-Measles-Rubella) vaccine he cannot receive because it is a ‘live’ vaccine.

However, we do make a concerted effort to get him his flu shot.  This is what led us to the Emergency Room this past Monday.

In the past, our son has had a reaction to the flu shot.  We have questioned whether we should still give him the shot. With the advice of no less than five doctors, we have been encouraged to keep doing it. Now we do the flu shot in microdoses.  The shot is divided into 4 microdoses and given in timed intervals.  If the first shot is given and there is no reaction - we proceed with the next shot.  This process is lengthy, and you can imagine how our son enjoys getting four separate shots.

We took this approach last year, and it went very smoothly. There was no reaction.  This past Monday, we did it again.  There was no reaction until the fourth and final shot. After the last shot, Russell’s skin broke out in hives, and he became very agitated and itchy.  The Allergist who was administering the shots provided an antihistamine, and when she felt that was not working, she then administered epinephrine and called 911.

This engaged all of the resources of the Winnipeg Fire and Paramedic Service.  The first to arrive at our Doctor’s office was the fire truck, with the ambulance closely behind. Yes, it was overkill.

Susan and Russell were quickly escorted into the ambulance and taken to the Emergency Room at HSC - Children’s. Russell got to operate the sirens, which he did think was rather “cool.”

The purpose of going to the Emergency Room was to monitor the allergic reaction and to ensure there was no rebound effect when the effects of the epinephrine wore off. We were there a few uneventful hours and were released. We went home for a much-needed rest.

The decision to give Russell a flu shot is not unlike many of the decisions that we have to make as it related to his health care. Managing a child with a heart transplant and kidney damage prompts many discussions about the types and effects of the medications he takes. Most of the medications he takes have the potential to do significant harm to him. We are not alone in this situation, this is the reality of anyone who has to manage a medically complex condition.

So, why did we chose to give Russell the flu shot when we knew there was a significant risk that he might have an allergic reaction. After all, the efficacy of the flu shot varies from year to year, and sometimes it’s a good match, and sometimes it is not. It is effectively playing the odds.  So, why did we do it?  Quite simply, because of anti-vaxxers.  

Everyone in our home gets the flu shot, so it wouldn’t be a big deal for Russell to not be vaccinated except for the fact that with the increased prevalence of the population not getting vaccinated (thanks to anti-vax hysteria) we now have to worry about every kid with a runny nose who Russell is exposed to at school. 

We have a long history of having issues with this.  Our children have been quarantined twice due to measles scares in their school and Russell had to endure a 5-day stay in hospital when he contracted Chicken Pox. Being immune-suppressed makes diseases like Chicken Pox and Measles a life-threatening reality. All thanks to the tin-foil hat conspiracy theorists who think they know better.

Will we give Russell a flu shot next year? At this point - I don’t know. We will have to make that decision in the next few months. Just another choice in a long list of options that we have had to make over the years. It is infuriating to have to face this reality knowing that many of these diseases could be mostly eliminated if people would just vaccinate.  

The next time you see a GoFund Me page or a Social Media story about a child with cancer or some significant health malady and you feel a need to support these families?  Perhaps, think about ensuring you and the people around you are vaccinated. You might even prevent getting ill yourself.

Adopting Hearts

For the past year and a half, I’ve been working on my manuscript that shares the story of my family. Yes, the story revolves around our battles with congenital heart disease but the project has taught me so much more. I suspect that some of my future posts will be based on some of these discoveries - some of which were victims of the editing process.

Writing the basic story was easy. The fact, dates, times, and chronology was fairly easy. After all, it’s my story. The challenge became in drawing a conclusion or trying to make sense of everything that happened to us. What was the point of it all?

I still recall several conversations with Susan as we talked about the many lessons that we had learned. I was curious if she was thinking the same things as I - or were we interpreting things differently. It was an enlightening exercise in introspection.

One thing that we talked a lot about was adoption. That seems strange given that our adoption story could be considered a footnote in the story of our family. As I wrote and thought about it more I realized how important our adoption experience was and how it prepared us for what was to come.

I still recall vividly, sitting in the PICU at the Stollery Children’s Hospital and having some of our nurses explain the heart transplant process to us. When we arrived in Edmonton we knew we were going there for the transplant but we didn’t know a lot about the process. We were so freaked out - we just knew that transplant was the only option and we wanted it to happen as soon as possible. Not much else mattered - we were in crisis mode.

As we got more information, and as the transplant process was explained to us, we had this strange sense of déjà vu. Things were starting to sound eerily familiar. We had no control over the process. The transplant could happen in a day, a month, or possibly - never. We were powerless and all we could do was sit and impatiently wait. We were completely dependent on somehow - somewhere that someone might make a choice. A very difficult choice.

The sense of déjà vu that we felt was because we had been through this identical process before. The loss of control that we felt and the complete dependence on others was the identical process we went through as part of the adoption process. In fact, even some of the words that were used were the same. What was even more intriguing to me as I now reflect upon that experience was that adoption prepared us for something else. Caring for a child that would require a great deal of extra support for the rest of his life.

When we went through the adoption process. We were constantly reminded that we needed to be prepared for every contingency. We could adopt a child with health issues, or disabilities. These were things that were impossible to predict. Susan and I had to ask ourselves a lot of difficult questions about how we would handle an endless number of possible scenarios. Not only to handle them but be willing to commit to a lifetime of challenges that they might bring. The ironic part of this story was that when we adopted Nicole she was the picture of health and perfect in every way. All of the training and preparation we had done to prepare for potential challenges did not materialize. All of the apprehension an worry that we had felt just evaporated.

The conclusion that we came to was that all of the preparation and education that we received as part of the adoption process was not preparing us for the child that we adopted but in time all of that knowledge would be utilized (and needed) when we had our biological child (Russell) and found ourselves in a life and death struggle in an intensive care unit. This time we would not be adopting a child - we would be adopting a heart.

I know that sounds strange, but when the transplant process was explained to us that is the conclusion that Susan and I came to. After all, it was how we had been taught. This realization was met with puzzled looks when we tried to explain this concept to some of our medical staff. I still recall one nurse having a shocked look on her face when we shared our insights with her and I feared I had said something bordering on offensive.  A few hours later the same nurse came back to me after having given my comments some thought and she understood what I was getting at. I don’t know if she agreed with my conclusion but perhaps she understood that adoption was something we understood and that we were using our own experience to cope with our grim situation.

Our experience with adoption was such a positive experience. It taught us so many things and forced us to think about the things that were important to us. That experience gave us clarity and more importantly hope when we were faced with the uncertainty of a heart transplant. In many ways, adoption was a perfect preparation for what we were going to face. Only now do I realize how important that was to us. It probably got us through some very dark days.

That is also the challenge that we have when we try to support people who are going through difficult times. It is hard to understand what they are going through when you don’t understand the context of their lives. This is why it is so important when we try to offer comfort to be quiet and listen to what they are saying. What is shared may not have significance to us, but it is obviously something significant or they would not have taken the effort to bring it up. We are the sum total of our experiences and inevitably we rely on our experience to cope with the challenges in our lives.

All of our life experiences are so unique and it is really interesting to discover how all of the pieces fit together. After all these years I’m still quite amazed.

The "Goalie" Mentality

Those who follow sports are familiar with a commonly used term "The Goalie Mentality." For those not familiar with sports metaphors, let me explain.

I heard a story a few years ago and it described some of the eccentric behaviour that seems to be common among goaltenders. The story describes a goalie who used to build a mental wall in front of his net. Just before the opening faceoff, he would skate to the blue line and slowly skate back to his crease. The whole way back he would mentally build a wall brick by brick. All the time telling himself it was his job to keep the wall intact. Some nights it worked….some nights the wall came down, but it was a consistent method for him to start every game. There were occasions, where a defenceman would greet the goalie in the midst of his pre-game ritual, to have a chat, only to be met with silence. Of note…do not mess with a goalie, they are a bit nuts. 

I share this story because it has had some relevance to us lately.

As with most kids, our kids spend way too much time in front of screens. As the snow was slowly melting, earlier this year, we could sense spring on the horizon. Susan and I asked Russell if he would like to sign up for a spring sport. We made a couple of suggestions and when we suggested soccer, he did seem to perk up a bit and he seemed genuinely interested.

With a lot of skepticism and a touch of fear, we signed Russell up to play soccer. We knew this would be a huge challenge for him. Russell hasn’t played soccer in 4 years, and that experience would hardly be called organized soccer. We knew he would be playing against boys who likely played every year and likely played indoor soccer in the wintertime. Our much greater fear would be how Russell would handle the whole situation as a boy who has had many challenges in his life, and where sports in school has been an unmitigated disaster. Russell has had many significant developmental challenges and at some point I hope to talk about them in more detail, but that is a decision for Russell to share and not me.

When I try to describe Russell and the challenges he has, many terms get thrown around.  ADHD/ADD - Global Developmental Delay - and some have described him with some characteristics of Autism but then quickly correct themselves and say “but he doesn’t have autism.” For parents, this has been a mess to try to figure out and honestly none of these labels seem to fit.

About 2 ½ years ago it was suggested to us that Russell sees a therapist who specializes in treating children who have anxiety related to medical trauma.  We had always hypothesized that Russell's medical horrors as an infant might be affecting him later in life, and as we learned that might indeed be the case. I can’t say how appreciative we are to finally find something that works for Russell. So far this therapy has been paying huge dividends, but we still have a lot to learn and this is a long term process. Ironically, one of the therapeutic methods that she uses involves playing soccer.

After hearing about our plan to put Russell in soccer, his therapist was very excited. She also cautioned us to just let Russell - be Russell. Don't warn his coaches about some of the challenges Russell has, let Russell figure this out on his own. Her concern was that if we made a big deal out of this that the coaches would just treat Russell the way he is treated in school. That he is different - and that he isn't capable. Don't let Russell get labelled. Don't let anyone put an asterisk beside his name.

As we were introduced to Russell’s soccer coach and the rest of the team, Russell shared something with us that struck fear into us. In trying to encourage him we talked about scoring goals, playing defence, and being a good teammate. Russell has very strong opinions and when he shared with us that he wanted to play goal we knew this was something he had his heart set on.

That may not be a big deal to most parents but for us, we were stricken by fear. Of all the positions to play, being a goalkeeper would put him on an island, by himself, and with no one to back him up. When the other team would score - they would score on “him.” A ten-year-old boy with significant anxiety issues. Suppressing our own fear, we kept quiet and hoped that the coach would take care of this. Surely, he wouldn’t put Russell in goal given that Russell was very inexperienced and was just learning some of the rules. We were not even sure how much Russell would even participate. Our goal was to have him be part of a team and be included. We were trying to keep our expectations in check. Just get out of the house, have some fun, and get some exercise. We would have considered it a huge success if we were to make it through without a meltdown.

The first game came and we could tell Russell was quite unsure on the field. He played defence which was a very safe spot for him. He did OK. He was a little disengaged but had a couple of good moments. For the most part, it was positive. Russell’s team won the game easily, I think the score was 9-1. Russell had a positive first experience but we know he was asking his coach to play goal. We could also see that the team had several very talented goalkeepers. I didn’t see a chance where Russell would be playing in goal anytime soon. We hoped Russell wouldn't be disappointed.

Game 2 came and things were going much as they had in the first game. This game was much closer and as I recall we were down a couple of goals at the half. It was actually a competitive and entertaining to watch. Then the unexpected happened. As the team was gathered around their coach I saw Russell rummaging through the equipment bag. The gloves were going on. Then the bright yellow jersey. I elbowed Susan and drew her attention to what was going on. All I could say was, “They’re putting him in…they’re putting him in goal!”

Both Susan and I had our hearts in our throat, which would seem like a massive over-reaction if you didn’t know Russell. Not just his medical history but his experiences in school where he has many times been labeled as one of “those” kids. The kid who wasn’t given a part in the Christmas concert because he was too disruptive and that was given other tasks to do while other kids would do the regular curriculum. It was also reminiscent of many of our experiences where Susan and I could not protect him. We couldn’t take his place when he was jabbed with a needle or when he was subjected to countless medical procedures. All we could do was stand on the sidelines, try to encourage him, and watch and wonder if this kid would ever get a break. How many times we had prayed that this kid would just get one break.

Once again he was alone in a goal that seemed to swallow up this little boy. Russell is thin and small for his age and it seemed overwhelming. Would this just be one more in a long list of disastrous experiences for him? 

The half began and play continued. Our team started playing much better in the second half. They scored a goal and before long the game was tied up. Then play moved toward our goal where are son guarded the net. The boy who had been aloof and seemingly disengaged had disappeared - he was laser focussed on the ball and protecting his net. The first shot on goal was a slow roller and Russell flopped onto the ball. Not being completely familiar with all of the rules, Russell required a little coaching in taking a goal kick, but he figured it out. Russell’s team played very well in front of him, perhaps knowing they had a “shaky” goalkeeper they knew they had to play well defensively.

Photo Courtesy of Rex Sokolies

For the entire half, Russell’s white-knuckled parents did not relax. As time passed Russell seemed to gain more confidence. He made a couple of stops and many of the parents cheered - which felt awfully good. Before we knew it, the referee was blowing the whistle. The game was over and Russell shut the other team out. Our team chalked up their second win. For Susan and me, we survived a very stressful half. Despite his parents being completely stressed, Russell walked of the field showing no emotion. From his reaction I wondered if he didn’t have a “goalie mentality.”

Since that early game, Russell has played in goal on several occasions. Has he been scored on? Yes. A couple of games were fairly rough, as they have faced some very good teams, but Russell’s reaction to being scored on has been consistent. He pulls the ball out of the net and fires the ball at the referee with no reaction. He just plays on. One of the key skills of any goalie is having a very short memory. So, you let in a goal…maybe it was a soft goal…it doesn’t matter …you have to focus on the next shot - the next play. You need to move forward and leave the past in the past…besides …what do you have to worry about, there is a wall there right?


UPDATE: I wanted to follow up on how the rest of the season went. Russell continued to improve and play goal. He was so into playing in goal he began showing little interest in playing the field.  Something for us to work on. However, he began showing a lot of confidence in goal and some of the other boys were openly suggesting to the coach keep him in goal as that freed up some of the other skilled players to play in the field. Near the end of the season, the boys had a game in Transcona, where Russell once again played in net. The boy stood on his head as his team was severely outplayed and he kept them in the game making several spectacular saves.

After the game, one of his coaches commented on what an outstanding job he had done and patted him on the back telling him he was the player of the game. Yeah...as a Dad I was very proud.

At the end of the season, we have an annual tournament to wrap up the season.  Typically, the boys take turns playing goal.  One boy would play the first half and then another boy would play the second half. We played 3 games in the tournament and Russell played goal every minute in goal. Both halves of all 3 games. He did great!

I wrote done some of these memories because successes like this have been few and far between. It's so important to celebrate the successes. I don't even know if Russell will play soccer again, but for two months we played 2 games a week - went to practices and we had a lot of fun.  I'll never forget it and how amazing our boy is.

The entire season I never once told anyone on the team - coaches or parents - that Russell has a heart transplant. It was so nice not to have to explain that.

To Stay or Not to Stay? That is the Question.

The Pros and Cons of Staying over-night in the Hospital with your Child.

When we embarked on our medical journey a little over ten years ago, we were clueless.  Before my son was admitted to hospital for the very first time he was only a few weeks old - we had no idea what we were embarking on.

To give you an idea of how completely unprepared we were I recalled our first few moments when we arrived on the ward on our first hospital stay.  I still remember the horror both my wife and I felt when we saw the crib that our son would be placed in.  The sides with the bars were extended all the way to the top and it had the plastic isolation barrier fixed to the top so that it was a completely enclosed chamber.  To us it looked like a baby jail.  It wasn’t a great first impression.

We had two relatively short stays in hospital that lasted just a couple of days. Those stays were extremely brief and involved starting our son on heart medications. They were actually boring. We did stay overnight in the hospital during these brief stays but we certainly learned that a hospital is a very difficult place to get any kind of meaningful rest. We realized early on that we needed to trade off.  My wife did one night and I did the next. Even in these early days we were starting to think a little more strategically about how to manage a hospital stay.

Then the Big One.

When our son crashed he was only 8 weeks old, this touched off a 5 month stay in hospital.  This situation was not even remotely similar to our previous two short hospital stays. The first 48 hours were a nightmare. If memory serves me correctly, we didn’t sleep for nearly 36 hours and found ourselves airlifted from Winnipeg to Edmonton.  The phrase “We’re not in Kansas anymore” took on a whole new meaning.

Ironically, in that first night in Edmonton, neither one of us stayed in the hospital overnight.  We came from the airport and arrived at the hospital in the late evening. We had time to see that our son was OK, spent an hour or two at his bedside and then we left to our hotel. We really had no choice.  We were exhausted and desperately needed sleep and the PICU was a completely open environment. There was no obvious place to stay even if we had wanted to. Were there other accommodations in the hospital? We didn’t know and we were just too tired to ask.

The next morning was our first full day in the ICU environment. We really lucked out and had a bedside nurse who coached us through what “life in the ICU” was like. She implored us not to spend too much time in the PICU. We had no idea how long we would be in hospital and we were told it could be weeks or months. Our bedside nurse repeatedly told us that we needed to “pace ourselves.” If we spent every waking hour in the hospital we would rapidly burn out. She was absolutely correct.

Having already spent one night away from the bedside and being confronted with many of the realities of an extended stay in the hospital we made the choice not to stay overnight. For the next 5 months my wife and I never stayed at the hospital overnight. Not once. I would say that this decision played a key role in our ability to survive our hospital stay.

Thinking back on that decision now, I am left with a bit of an uneasy feeling recommending that approach to anyone else. What worked for us may not work for others. It’s important when dealing with a crisis to be able to assess your own skills. What you should be spending time on and what things you need to let go.

Why Did We Choose Not to Stay

There were two main reasons why we chose not to stay overnight. We trusted the staff and the fact our son was only a few weeks old.

We had been at the Stollery Children’s Hospital for only a few hours and even in those early moments we were already developing a significant trust with the staff in the PICU. In the PICU you have one to one nursing and even when a nurse was on break we could visibly see the watchful eyes of the nursing staff as they monitored our son. Many times we would stay in the evening just to see who our nurse would be for the night. When we became aware that our nurse was someone we knew and already trusted it became an easy decision to leave. If it was a nurse we had never met before we would stay a little longer and try to get to know the nurse a little more until we were comfortable leaving. Even when we were eventually moved to a regular ward, all of the cardiac patients were on telemetry. From the nurses desk they could tell if our son was awake - just by looking at the monitors. There were times that we arrived in the morning and our son would not be in his bed. He might have woken up during the night and one of the nurses would have picked him up and may have taken him to the area where they may be charting or doing other work so that they could keep a closer eye on him. This was very reassuring to us. It actually felt like the kind of care that you would get if you were at home.

The second reason we were comfortable leaving was that when we arrived in hospital our son was only a few weeks old. Being so tiny he slept or was heavily sedated. He was at a *developmental stage where he would not have had the same awareness of the environment that an older child would have had. If he had been older…possibly 8 or 10 we would have likely re-evaluated our approach. This is why in later years we have stayed with him during hospital stays as he is just at a different stage in his life. As children grow and develop we have to change our approach.  What worked 5 years ago doesn’t work today. As he approaches his teen years, we will likely have to consider other approaches as caring for a teen in hospital will be a much different experience.

The point I am making is that hospital stays are hard on a family. That cannot be avoided. There is no magic right or wrong. We have to figure out the best way of managing our situations based on your own specific needs and the specific challenges you are facing.

I know some parents might say, "I could never leave my child alone at night in a hospital." I get that and I understand.  However, “how are you going to survive?” is a very valid question. I have seen other families take very different approaches than we did. I know several who have traded off with other family members to stay overnight.  One night it is Mom, the next night it might be Grandma and so on. If you have a large enough care network, this is a very viable approach. There are many solutions. 

There is no perfect formula, we write this script as we go. The one thing that you can’t do is beat yourself up over a decision that you made. In this process we all make mistakes and you have to accept that. I know that I made the case for why we chose not to stay overnight but there were times we questioned whether that was the right choice. Our son went into V-Tac on one night when things were very tense. He could have easily have died while we were comfortably sleeping in our hotel room. Perhaps my take on this topic might have changed drastically if that had happened. These are the choices you are forced to make when your children are in hospital. It’s not easy.

If you are facing a challenge like this I would make a couple of suggestions. Talk to your nurses, or a child life specialist. They see these situations all the time and they can provide valuable insight. There may even be a place to stay in the hospital that is not at the bedside that is in close proximity to where your child is. This would be dependent on the facilities in your hospital. I would also encourage anyone to reach out to peer parents who have been through situations like this. They can provide a lot of practical advice about not only how to manage a hospital stay but many other life situations that parents of medically complex children face. There are people out there who want to help, perhaps the biggest barrier to cross is to admit you can't do it all on your own and to ask.

* Note: The effects of medical trauma on our son were profound and only realized years later. Although we were told and believed that he would never remember his experience in hospital - research is now showing that not to be true. Another factor to consider when leaving a child over night in hospital. I shared our experience based on what our understanding was at the time. I think we would have made the same choice but I think parents should have the best information available to make an informed choice.

Basketball and Parenting

  This past Wednesday was my daughter Nicole’s last basketball game of the season.  I’m a little sad that it’s over.  I’m going to miss our conversations on the way home - talking about boxing out and the pick and roll.  I was lucky enough to be able to get to almost all of her games.  I only missed one. 

So, why am I sad?

When you have a medically complex child, many times the healthy sibling(s) takes a back seat.  This has happened on more than one occasion and it kills you as a parent to short change your own kid.

For the ten years that Russell has been with us it seems he has dominated many things we do.  Nicole was 2 when Russell was born and even at that very young age she has been a tower of strength.  She has rolled with almost everything that has been thrown her direction.  Her easy going personality and ability to adapt to some very awkward situations has made our job as parents immensely easier.

That is why when we get a chance to do things - just for Nicole - it takes on more importance. 

The second reason why the end of basketball season is a sombre event for me is that way back in the dark ages, I coached Junior High Girls Basketball.  Seeing Nicole play now brought up a lot of very fond memories.  I tried really hard not to go into coaching mode with Nicole to which I was only moderately successful.  Regardless of her basketball skills, what impresses me most is how her personality serves her so well on the basketball court.  She is actually a pretty good shooter and passer.  Passing the ball to a teammate so that they can score is totally in keeping with her personality.

There was one thing that she did during one of her games that I was most proud of and it had nothing to do with basketball.  While Nicole was on the bench one of her teammates got hurt and had to leave the game. The game went on and when I glanced back at the bench where Nicole was sitting I noticed the injured player who was in tears and Nicole with her arm around her. 

When we have kids we have no idea how they will turn out.  Susan and I have tried really hard to enjoy our kids for who they are and at whatever age they were.  It’s easy to think ahead and think how much better it will be when our kids are older and will be more self-sufficient.  Then they get a little older and we start missing some of those earlier days when they may have been a little more work but did so many other things that that made us smile.  And perhaps didn’t talk back quite so much.  I always try to encourage other new parents who might be feeling a little overwhelmed and that may not be getting much sleep to enjoy the moment with their kids.  Those special moments with your kids are fleeting and in a blink of an eye they are gone.  I’m constantly amazed when I observe our kids wandering around the house and wondering…who are these children? And how did they get so huge?  It seems like it was not that long ago that I could carry them around like a football in one arm.  Those days are long gone.

Being a parent is an adventure.  It is never dull.  There are many times that we wish we could get a do-over but unfortunately we can’t.  Tomorrow is another day and we get another opportunity to try to get it right.  Now, I can’t wait for spring so we can get the basketball hoop up in the driveway so we can work on that "lay up."

Fixing the Organizational Chart - Won’t Fix Health Care

Many many years ago, when I went to university, I began taking business courses as I felt that was a practical way to advance my career.  I recall a sessional instructor that we had.  I always enjoyed sessional instructors because they always seemed to try harder - they weren’t the stodgy tenured types that only seemed to put me to sleep. 

I distinctly remember "Intro to Management."  In addition to some other topics, this course taught us the basics of organizations and the many ways they could be constructed.  To this day, I still remember our instructor pounding basic concepts into our brains.  I recall her saying that if she were to wake us up in the middle of the night - her expectation was that if we were just coming out of a dead sleep she would ask us what the four functions of management were and we should be able to answer that question instinctively and without thinking.  Her teaching must have done something for me because to this day I can still list them off…Planning - Leading - Organizing - Controlling.  Of course this answer has been updated as we don’t use the term “controlling” anymore and now we use the much more politically correct term “directing.”

In addition to these basic facts we looked at different types of organizations and how they are constructed.  We looked at centralized vs decentralized organizations.  Organizations built around product types or geography.  What’s been fun for me is to reflect on the many organizations I have worked for and think about how they were/are constructed and what organizational structures work well and which ones don’t.  The conclusion I keep coming to is that the structure of the organization can be an impediment to an organization’s success but if there are large problems - changing the organization structure will not solve fundamental business problems. Structure is important but it is not fundamental.

Take a quick look at some of the most epic business fails in recent history.  Blockbuster Video, Eastman Kodak, or Sears.  Would a different organization structure have made any difference to these companies? No. Perhaps some different people within the organization may have helped but the actual structure itself would have had little difference on their eventual downfall.  Poor business decisions or a failure to adapt to a changing market are the reasons businesses fail.  Analysts would call these the "business fundamentals."  I may be totally wrong here but I don’t think Sears would have been saved by moving to a matrix organizational structure.

This is why I find it somewhat sophomoric that within our Canadian Healthcare system we tout organizational change as a catalyst to solve our profound health care woes.  Let me be clear.  Changing the structure of an organization can help facilitate changes but it is NOT a root cause issue.  If you are providing mediocre service and you change bosses - how does that actually facilitate an improvement in service?  It doesn’t. Now...if that new boss has the authority to change how you do your work...that is very different.  So just like a new boss - a new organization structure on its own will not solve any problems.  It is what they do, or what they are allowed to do that really matters.

We are going through changes in our health care organization in Manitoba and now we are getting a lot of media attention on some of the proposed changes in Ontario.  Saskatchewan has centralized their services and so has Alberta.  It is happening all over the country.  Will it make some modest improvement - possibly - I hope so.  Will it solve the BIG underlying health care problems?  Not a chance.

The underlying problem in Canadian Health Care is that our demand for health care services by our population far outweighs the availability of those services.  The result is wait times, over extended care providers, not enough physical capacity and the most disturbing result is harm to patients.

 

What is even more frustrating to me is that many of the big issues in our health care system are well known.  Both the Romanow Report and the Naylor Report call for fundamental changes in the Canada Health Act.  Suggesting a change at this level is not controversial but what becomes very controversial is spelling out specifically what might be proposed to replace it.  For a government this could be political suicide.

We need to look at some of the foundational issues that plague our system.  However, the issue is that we cannot have an honest discussion in this country about health care policy without the discussion devolving into an idealogical battle that get us absolutely nowhere.  Terms like “privatization” and “single payer” are tossed around with little understanding of what those terms actually mean.  Can a single payer system incorporate many free market components?  Yes…but don’t dare suggest it.

I think what I find most offensive is that we have a health care system that is effectively run by political interests.  Politicians are very good on capitalizing on sub-par health care statistics to vilify the sitting government and get themselves elected.  Then once in office they stare at each other with blank looks as they have no idea what to do to solve the problem.  In many cases the solutions would require significant change which would bring howls from the opposition forces.  It is more politically expedient to nibble at the edges of the health care system than face the vitriol if substantive change were to be proposed.  So what do we get from every new government that gets elected?  A change in the structure of the organization.  The health care equivalent of re-arranging the deck chairs on the Titanic.

Sorry folks…the ship is still going down.

A New Year - All New Challenges

A few years ago i remember a conversation I had with another parent who also has a son with a heart transplant.  I recall him saying how every once in a while, before heading to bed, he would go to his son's room and pause for a few moments.  In his mind he would reflect on the entire transplant experience and think to himself. "Wow!"

On December 30th, we celebrated Russell's 10th Transplantiversary and when we think about all that has transpired in the last 10 year...we have our own "wow" moment. 

It's nice that our anniversary of Russell's transplant coincides with the dawning of the New Year because it feels like we hit the reset button on a few different levels.

The funny thing about leading medically complex lives is that just when you figure things are under control and that things are heading the right direction.  Something usually happens as we hit the brick wall of reality.  We just have to roll with the punches and move on.

This week was a great example of that.  A great example of the highs and lows that we experience.  In this week alone, we started a reading program, did blood work, got called into the school twice, had a nephrology appointment,  an appointment with our family doc, started two new meds, discontinued another, we have a speech therapy session this afternoon, a few other school activities, and music lessons.  Somewhere in there I managed to go to work and get a multi million dollar project approved.  This was one week, and next week we will do it all over again.

So, as we approach 2019, we have many great aspirations for the year but we know that many things will happen that blow up a lot of our plans.  That is just the way it goes.

2019, will bring lots of new challenges, but it is important to realize how far we have come.  It is really interesting to talk to Russell about his medical experiences.  Now that he is a little older and has more understanding of his situation.  He has made huge strides this year in understanding his own medical reality.  His perspective is so different than mine or his Mom's.  Every negative experience he has ever had related to his health has been related to his transplant.  Why does he have to get poked so often and why does he have all of these appointments with doctors.  All because of his transplant.  When you think of his transplant through his eyes you begin to understand why he isn't such a huge fan of his transplant.

Over the past year, Russell has been asking a lot more questions about his medical reality.  We talk about his medications.  We are teaching him their names and what they do.  It requires some creativity to explain what happens if he were to stop taking his anti-rejection medications.  Looking at life through the eyes of a 10 year old is an interesting experience.  No doubt there will be many interesting questions yet to come.

It is also interesting to teach him some independence.  At some point in time Russell will have to learn how to be his own advocate.  Even now, he does his frequent trips for blood work almost completely on his own.  All I do is provide transportation and our medical card.

As much progress as Russell has made this year, we have seen a significant decline in Susan's health.  Without getting into the details and lengthy explanations.  It isn't good and it is unlikely to get better.  Failing hearts don't get better.  The only thing you can do is trying to minimize the damage.  This is my own opinion here, but I think we are at a tipping point.  I think I know what is ahead, just a matter of convincing Susan's doctors of that.

This WILL be an interesting year.  In spite of all of the challenges - we will do everything we can to enjoy every moment.  If there is anything we have learned these past ten years is that every moment is a gift and to do everything we can to enjoy the moments we have together.

 "For I know the plans I have for you - this is the Lord's declaration - plans for your well being, not for disaster, to give you a future and a hope."

- Jeremiah 29:11  CSB