Wednesday, June 5, 2019

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…don’t 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 winter time. Our other 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 see a therapist who specializes in treating children who have anxiety related to medical trauma.  As we learned more, this concept seemed to describe Russell in much more accurate terms. I can’t say how appreciative we are to have finally found 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. That was our only goal.

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 had a couple of good moments and it seemed like everything 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 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 game 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 and what he had been through. 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 from. 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.

Once again he was alone in a goal that seemed to swallow up this little boy. Yes, by itself it was just one small experience but for Susan and I it held a lot of symbolic and emotional significance.

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. He seemed completely focused on what was going on. The boy who had a difficult time focusing was nowhere in sight. The first shot on goal was a slow roller and Russell flopped onto the ball. Not being completely familiar with all of the rules of soccer, 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 I, 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 “goalie mentality.”

Since that early game, Russell has played goal on several more 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?

Thursday, March 28, 2019

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.

Saturday, March 2, 2019

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."

Friday, February 8, 2019

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.

Saturday, January 12, 2019

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              

Monday, December 24, 2018

Merry Christmas...Maybe...Maybe Not

It's Christmas Eve.

All of the Christmas concerts are over and all of the shopping is done.

I decided to go into work this morning as I knew it would be a quiet morning.  The drive in to work was almost enjoyable.  No school buses on the road and noticeably less traffic.  Being less hectic you get to enjoy the drive a little more - as it is still dark when I head to work I could enjoy the Christmas lights and the holiday decorations.

Hoddinott Road, Birds Hill, Manitoba

As I had time to think about the season I recalled an email from one of my daughter's teachers.  A note of thanks sent to parents.  With Christmas, the school supports many initiatives to support those less fortunate in our community.  This message stuck out as one of the groups they were supporting was those who are going to be in hospital over Christmas.  I had felt compelled to say a "thank you" as 10 years ago - that was exactly what we were facing.  A Christmas in hospital.

As I have been working on my book over the past year, I had to re-live that Christmas.  Susan and I have had some interesting discussion about what that Christmas was like.  In same ways it was a great time.  Russell had bounced back from a tumultuous month and half in the ICU.  He had been through one open heart surgery to implant his Berlin Heart and was making spectacular progress on this "experimental" device...but there were many other things going on that were not quite so cheery.

Having been listed for a heart transplant since mid October, we knew we had some challenging days ahead of us.

We were hoping for a bit of a reprieve at Christmas.  A chance to concentrate on some other things other than "hospital world."  Knowing we could be in hospital for months we had a lot of time to prepare for a Christmas in hospital. Our biggest goal was flying Nicole from Winnipeg to Edmonton to be with us so that all four of us could be together at Christmas.  Anticipation was a nice distraction.  Having her spend time with us was even better.

What became a hallmark of our stay in hospital, once we had a moment of success or just when the pressure seem to ease off - something would happen that slammed us back into reality.

In early December, Russell developed a GI bleed.  This resulted in a return trip to the PICU to manage the situation and to get blood transfusions.  With that disaster averted we also got word that one of our little friends in hospital got their heart.  There were three of us in the same room who were all listed for transplants.  This left the two of us to wait.  That was frustrating but we accepted it as part of the process.  Surely, our turn would come...hopefully soon.

Russell was the highest priority transplant listing as he was on the Berlin Heart which was considered to be on life support.  We thought the transplant would come soon - but it didn't - the days and weeks slipped by.

During this time we did get to bask in the attention of being a Berlin Heart patient.  The staff seemed to take a lot of satisfaction in how well Russell was doing.  He was growing, gaining weight, and thriving.  This was great and it did give us some comfort but during rounds I still recall our Berlin Heart Doc urging the team not to be complacent.  He stated..."this is the time when something bad happens...we pat ourselves on the back...when we need to be vigilant"  ... he continued "we have to realize that we are only one blood clot or one hemorrhage away from disaster!"  He was right - and we were so thankful that he said it because he was saying exactly what we were thinking.

It seemed we couldn't escape our grim reality.  The final insult took place on December 23rd.  When we went to the hospital Russell was undergoing a Cardiac Echo.  These were not unusual events.  In fact we had become used to this constant attention.  However, we found out later why Russell was undergoing this test.  We found out that the little girl in the bed next to Russell was receiving her heart transplant...which ended up taking place on Christmas Eve.  The reason why the Echo was done was to measure Russell's heart.  Russell was at a higher status level than the little girl who eventually got the donor heart.  As we found our later, not one Echo was performed but two.  The cardiologist on service ordered a second Echo to be absolutely sure.  He performed the Echo himself.  Russell missed this heart by the smallest of margins.  It was slightly too large for him

This news crushed us.  There would be no Christmas miracle for us.  We would have to wait.

There were many people who made extraordinary efforts to make our Christmas Merry...but it wasn't to be.

...but there was one Christmas Elf who arrived on Christmas Eve who came by to visit us.  David - Russell's Berlin Heart brother.  David was also on A Berlin Heart and also shared Russell's celebrity status.  David was a young man who barely qualified to be in the pediatric program as he was in his late teens.

I don't know why he came to visit us on Christmas Eve...but he did.  We took a walk with him and we visited for a couple of hours.  A couple of hours that we desperately needed.  David had his own harrowing medical story and in a few months would also be listed for and receive a heart transplant.  It was perfect timing that led someone who knew exactly what we were facing to come and spend time with us.

For everyone, we all have unique memories of Christmas.  Good and bad memories.  For us, this was a Christmas we hoped to forget.  Our only thought was to get home and celebrate our next Christmas at home.  Thankfully, we have had 10 far better Christmases than our hospital Christmas.  Little did we know it - but as dejected as we were - our Christmas miracle was already in the works.  Russell received his heart transplant only 5 days later.  That was the beginning of our journey home.

For those who are working in hospitals we thank you.  For those unlucky enough to be a patient in hospital this Christmas, we hope you can have a Merry Christmas.  We hope you get to enjoy many more Christmases at home in the future.

Saturday, December 22, 2018

The Heart Cath Aftermath - A Matter of Trust

It has been over a month since Russell's Heart Catheterization.  It has been a crazy busy month as December usually is so I haven't had a lot of time for writing.  It doesn't mean I haven't been thinking about our experience.  I have....and one theme keeps percolating to the top.  The whole topic of "trust" and how it influenced our experience on that very long day in hospital.

How important is "Trust" when working with your health care provider?

I strongly believe that to fundamentally improve health care we need to enable positive relationships between patients and providers.  You cannot have that relationship without "trust."  Trust in the health care system is a massive issue.

When Susan and I took Russell to his Heart Catheterization a few weeks ago, we had a significant amount of anxiety.  Not due to fear of the unknown but a fear of the known.  Russell has done this surgical procedure numerous times before.  As a cardiac patient herself, Susan, has also been through this.  We know exactly what it is all about and what to expect.  This has been an awful experience for us in the past.  Not that there was anything done incorrectly or that the procedure wasn't successful but our path through the day had been unnecessarily stressful and fraught with many frustrations and miscommunications.

The bottom line is...our son is poked and prodded (for the millionth time) and no matter how prepared we are we always end up having at least one or two surprises.  To be bluntly honest we are completely sick and tired of subjecting Russell to this.  Probably, not the most positive of mindsets heading into the day.  To say we are skeptical of this process would be an understatement.

Regardless, of our misgivings - we signed up for the transplant roller coaster ten years ago and we can't exactly back out now.

Without getting into all of the details, we had to deal with all of the usual Cath Day silliness.  Confusion on med orders.  Russell's treatment plan being discussed at the nurses station without us - while we were within earshot.  The usual ridiculously long wait with a son who cannot eat (NPO) and is essentially starving.  The only thing that saved us was smartphones and video games.

Finally, we get down to the Cath Lab where we met the anesthesiologist and the anesthesiology fellow.  Both of which we had never met before.  Having done this several times we know most of the staff but these ones were knew to us so the apprehension got ratcheted up a notch.  They were both friendly and receptive until there was some difference of opinion in sedation strategy.  It was pretty clear to us that our carefully pre-discussed plan was being thrown out the window.  There were some concerned looks from both sides of this "discussion."  Anxiety cranked up another notch.

As we waited for our cardiologist to arrive.  We did the pre-op rituals of signing papers and doing the "consent" thing.  The nurse clinician was also a new face to us.  We've had a couple of retirements in our cardiology clinic and this was one of the new nurses.  Again, not unusual to be seeing someone new but it would have been nice to see a familiar face.  Then she began explaining the procedure to us.  A well rehearsed monologue that we knew well.  Except there were a couple of things that she explained that they were going to be doing that we questioned.  Again, this is where knowing the routine worked against us.  We knew some of the nuances of the procedure and we were being told some things that were new to us and had not been discussed.  Anxiety-once again-amped up a notch.

The funny thing in all of this stress for two parents who were about ready to explode - Russell was calm and joyfully playing video games.  At least some of our preparation seemed to be working with him.  All the more reason to realize that you are not treating the patient - but the whole family.

Then our cardiologist showed up.  Finally - a familiar face.

Thinking back now it is almost comical.  As soon as he showed up the stress vanished.  It was like air being let our of a tire.  Finally, someone was here who we knew and we trusted.

Our Doc, after saying some initial "hellos", disappeared into the cath lab and after a few minutes re-appeared.  He came and sat down with us and immediately started talking to us about what we have been up to.  We had not done a Cath for two years so we did have some catching up to do.  We have a long history with this Doc.  He was the Doc who was on service the night Russell crashed in Emerg ten years ago.  To say we have some history is an understatement.

With our visit out of the way our Doc began to explain the game plan for the day.  He mentioned several things that we were not aware of and explained he explained the reasoning behind them.  The anxiety was completely gone as we knew Russell was being taken care of by someone we trusted and someone who knew all of Russell's history without reading a chart.

The other thing that we noticed after this point was that everyone seemed more at ease with us after "our Doc" arrived.  The anesthesiology team who was quite skeptical of us, at first, were now more at ease with us - even their body language changed. They explained their strategy in more detail, and with more respect for our knowledge.  The cloud of mistrust was gone and the pieces fell into place.

Russell took a swig of a pre-sedation cocktail (Midazolam & Ketamine) and they rolled him into the Cath Lab.  The meds worked quickly.  Russell was very mellow when they started the IV.  Susan stayed with him the whole time.  It went remarkably smoothly.  While Susan was with Russell, I watched from the foot of the bed where I continued our conversation with our Cardiologist.

Russell and Susan in the Cath Lab.  When the sedation plan works right it allows a Mom to be a "Mom"  A few years ago there would have been about 6 people pinning Russell down and trying to get an IV started.  This is a huge improvement.

With Russell now completely out, we departed and headed to the cafeteria.  After a quick bite to eat we headed back to the cath lab to wait.  To our surprise one of the nurses came out and told us they were nearly complete.  This was remarkably quick.  In a few minutes we were wheeling Russell upstairs to the PACU.  Russell was still quite out of it while we transported him.

As we reached the doors of the PACU we were unceremoniously stopped and asked to wait in the waiting area.  Susan and I were noticeably irritated and we shared our opinion that it was our intent that we should be the first people Russell sees when he wakes up.  Our requests were ignored and we were relegated to the waiting room.  I was so frustrated - I thought this policy of banishing parents from the PACU had been eliminated.  So frustrating.  I think one of the things that frustrates me most about this policy is that I’ve never been given good rationale for this.  Trust me - I’ve heard them all.

What was even more frustrating is that they made us wait more than 90 minutes before letting us into the PACU to see Russell.  As the PACU was almost empty when we were let in I can only assume that they were waiting for Russell to wake up before letting us in.  Sepcifically what we didn't want to have happen.  I guess they don’t understand the torture that they put parents through by being separated from their children.  We assumed Russell was fine but when we are separated like that your mind wanders and imagines all kinds of things going on.  When you have witnessed bad things happen in recovery, in the past, the fears we experience are not unfounded.

Fortunately, after we were finally let in - we found Russell in a very calm and relaxed state.  This has not been the case in the past and it was nice to see him calm.  The sedation plan had worked very well.

The rest of our stay was uneventful and the initial results of the test were positive as well.   All things considered it was a very good experience...with some notable exception.

What I took away from the day was how much “trust” played a role in our anxiety.  Surgical procedures are not pleasant but they are necessary and something we cannot avoid.  There will always be some anxiety.  I got the feeling that some of our team may not understand how stressed we get during these procedures.  After all, we have done these things so many times we should be used to them by now.  To be honest, we will never get used to them.

I was also  amazed how upset and frustrated we got when we felt we weren’t being understood or listened to.  It was also interesting how we reacted when a person showed up who we knew and trusted - how our stress simply vanished.  Trust is such a huge issue.  I am sorry, but just because you have RN or MD behind your name does not mean we will trust you.  Trust is built on a relationship.  If you don’t know us or make any attempt to know us we won’t trust you.  Even a very simple statement can build trust.  A comment like “we are going to take very good care of your son today” can make a difference.  We would assume that is a given but it makes a difference to say it out loud.

The other point I wanted to make was how parents learn to read between the lines and use intuition to gauge what their care team is all about.  I think Susan and I have become very sensitive to reading body language and tone of voice.  We know when we aren't being told the "full" story.  We know when our input is being dismissed.  We have been at this for a lot of years and we have developed a keen sense of detecting when something isn't right.  When you spend hours waiting and observing you learn how to read nuance.  You analyze every word and facial expression.  It is all part of being in the health care pressure cooker and I don't think many health care providers fully understand how much analysis is being done.  This is why more communication is needed and not less.  If you aren't talking to patients and informing them they will draw their own conclusions based on incomplete information.  Do you really want them doing that?  If not.  Then talk to them! It is the very beginning of building trust.