Patient Centred Care is not about "Feel Good" Experiences

Today is an emotional day.  Oct 3rd brings back a lot of memories both good and bad.  In addition to being Susan and mine wedding anniversary it is also the the anniversary of Russell being medivac'd to Edmonton.  This day still holds a lot of meaning and there are so many reminders that bring us back to that moment, as if it was yesterday.  Probably the most horrific 24-36 hours we have experienced.

Russell survived that night and the following 6 months in hospital.  The one thing that sticks in my mind is why we took Russell to the Emergency Room on that day.  There was nothing that was going on with him that was alarming or even profound.  As many times as we tell this story the only way we could have described Russell's health that evening was that he was a "little off."  So why did we take him to the hospital?  The reason likely goes back to the day we got his diagnosis of his heart condition only two months earlier.  Literally we had the "fear of God" placed into us on that day and believe me; that conversation has stuck with us to this day.

We received Russell's diagnosis of Non compaction Cardiomyopathy in Mid - August.  Russell was only a couple of weeks old.  We knew there was a genetic possibility that Russell could have inherited Susan congenital heart condition.  If he had, we assumed he may never have to deal with the symptoms until he was an adult and possibly not until he was into his 30's. This is the pattern that the condition had taken with Susan and her Dad.  Adult onset.  Something to worry about in the future.

Perhaps this is why on the morning that we attended the Pediatric Cardiology clinic we may have had a bit of a cavalier attitude to the whole process.  I remember going through the whole routine.  height, weight, etc.  Then we had the echo.  Again, a process that we were familiar with.  Then we were ushered into one of the clinic rooms to wait for our cardiologist.

This is where our visit departed from the norm.  Our doctor came in and started asking the usual questions.  I don't remember the specifics but I remember him explaining that he saw "something" on the echo.  He started talking to us about a version of cardiomyopathy that we had never heard of..."Non-compaction."  We were confused, this was not what Susan had...this didn't seem to make sense and the Doctor himself didn't seem sure of what he saw.  The next phase of the discussion was unlike anything I have ever encountered.  The Doctor suggested that we do a second echo and have one of his colleagues take a look.  This was strange and a whole lot unnerving.  The sense of panic was starting to creep in.  We did the echo and had a second cardiologist look at Russell's heart.  He confirmed the "Non-Compaction" diagnosis.  We were stunned.

The next part of our conversation with our cardiologist was not pleasant.  He started explaining what non-compaction was.  He started discussing the condition and prescribed some medications.  The gravity of the situation was starting to sink in.  This was serious.  The Doctor went on about what this condition could mean and what they can do about it.  In that conversation many hopes and dreams for our 3 week old son started to come to a screeching halt.  The Doctor went on, he pushed until he got a reaction.  When Susan started to well up with tears he stopped.  At that point he knew we understood.  Some may call it "cruel" or even "mean" but he pushed us until we understood the seriousness of what we were dealing with.  We walked out of that clinic appointment feeling like we had been hit by a bus.  This would NOT have been a good time to do a patient satisfaction survey.

We walked out of that appointment with a fist full of prescriptions and a date to come to be admitted to the hospital in the next week or so to start Russell on Captopril.  If that went well, we would then be booked for another stay at the hospital to start Russell on Carvedilol.  Our life as we knew it had ended but we weren't ready to accept that yet.

The next month and a half went by without event.  Our two stays in hospital in September of 2008 were uneventful and actually boring.  Russell, on the other hand, was doing great.  He was eating, and gaining weight and doing all the things a normal baby would do.  We were beginning to think that the dire warnings that we had received were unwarranted and that our Doctors had scared the life out of us for no reason.  After all our son looked absolutely perfect.

Then October 2nd came.  Russell stopped eating.  This was unusual.  He had trouble keeping food down the night before and now we couldn't interest him in any food at all.  Susan observed that his colour didn't seem right either.  Nothing profound but still he didn't seem himself.

We paged Cardiology.  We got a Doctor on the phone who had actually seen Russell in clinic and was familiar with him.  He assured us we weren't crazy and he suggested to bring Russell into Children;s Emerg and have the ER docs check him out.  In his words "if it was just a kid thing; they would send us home in a few hours" and it would be no big deal. It turned out to be a VERY big deal.

We arrived at Children's Emerg late in the evening on Oct 2nd.  We felt silly being there as Russell's demeanour and his colour had improved.  It was in Emergency only a few hours later when Russell went into cardiogenic shock and touched off a night of him being in the resuscitation room clinging to life.

Thinking about that night 8 years later we are still so thankful for the Doctors who scared us enough to take even very subtle symptoms seriously.  The message in which they were delivered you could describe as harsh but it was the right information at the right time and that is what matters.  Our Doctors also did something else.  They showed us their humility and openness.  We had one cardiologist who put his ego aside and let a colleague examine our son to confirm his diagnosis.  I am sure this happens in other situations but these Doctors went through this process with us in the room and with our full knowledge.  There actions conveyed a message that they didn't have all the answers and that honesty was refreshing.  We received a message loud and clear that these people were being open and honest and that was how we were going to establish this relationship.  In subsequent visits, we were shown emails from other specialists at other hospitals.  Doctors with who we were consulting with and seeking out the best information on this rare condition.

It was this openness and the willingness of our Doctors to deal with difficult issues that lead us to page cardiology, on the evening of October 2nd.  We felt comfortable doing it.  We didn't feel like we were using up valuable health care resources.  The reality was that we could have easily have said to ourselves..."let's sleep on it and see what Russell is like in the morning."  If we had rationalised in such a way; Russell would never have seen the next morning.  If there had been any barrier for us in contacting our Doctor, chances are, we wouldn't have.  That is why access to health care is so critically important.

This is why I am so frustrated by our health care system.  There are so many road blocks that exist for patients to access the system.  This goes far beyond wait times and structural barriers.  Many patients are made to feel that they are inconveniencing the system when they seek help for "small" issues.  There are whole campaigns, in health care, that are dedicated to forcing the patient to self evaluate and "choose wisely" before seeking care.  The general public should NOT be asked to self-diagnose.  That's bad medicine.  That is a subtle form of health care rationing and it is unacceptable.

Because of the openness we have with Russell's doctors we routinely ask questions via phone and email.  It is this level of access that has eliminated the need for many clinic visits and emergency room visits.  Access to accurate information and knowledgeable people is the most efficient way of managing health care and it puts the interest of the patient first.  Putting "patients first" or being "patient centred" seems to be a catch phrase nowadays, which is unfortunate because putting patients first is how the health care system needs to be re-organized.  It is not about making the public feel good it is about saving people's lives by listening and acting in collaboration with the patient.

My son's needs were put first 8 years ago.  Our Doctors put "his" needs first; even ahead of the hurt feelings of his parents.  Putting him first saved his life.  Sometimes we need to be forced to face harsh reality.  That process can be difficult and hurtful...but it is so necessary.

Confessions of a Health Care Adrenaline Junkie

We are all familiar with the safety instructions when we travel by air, on a commercial airline.  You invariably get the instruction about the air mask that pops down from the bulkhead above you, in case the cabin loses pressure.  You are clearly instructed to affix your mask and ensure you are getting air prior to helping anyone else.  The very same thing can be said of caregivers.  You have to take care of yourself first.  You are of no help, to the person you are caring for, if you are falling apart.

There is no doubt that our family has gone through some very unique experiences.  I find my role unique in that I usually take on the role of supporter and not directly on the front line.  It's a bit like having a backstage pass to some of the most complex parts of health care.  I see many things that 98% of the population don't see.  I am extremely fortunate (and thankful) that I am not the subject of these traumas.  The traumas that members of my family have had to endure.  One stunning realization that I made not that long ago was something that isn't easy to admit.  The realization that after our lives were turned upside down and being faced with life and death scenarios was the shocking discovery that it actually gave me an adrenaline rush.

Yes, I am a Health Care Adrenaline Junkie.

Don't get me wrong.  I am not a ghoul that enjoys watching people suffer.  Far from it.  To explain this I think I need to back up a bit.

When Russell crashed in the ER in the fall of 2008, it started a cascade of events that would see us transported to another hospital, in another province.  We would be there for over 6 months.  To enable us to keep family and friends informed I began a blog (care page) to keep everyone up to speed.  This blog gave me a purpose.  It was a great from of therapy and kept me busy during many monotonous hours in the hospital.  I enjoyed it...sort of.  Certainly there were a great many experiences that no one should ever have to go through.  Although writing about these experiences was not always easy it a very effective way of dealing with the stress.

In the years since, we have had several "scary" episodes.  This journey really never ends.  Each time I have been able to draw on our experience and I felt confidence that we could do it again.  A bizarre sense of invincibility.  This is how I processed these situations mentally.

In the years since, I have shared our story (publicly) many times.  After sharing I get many predictable questions.  One of the questions I usually get is "how do YOU handle all this"?  I must admit the first time I heard this question it took me off guard.  I didn't have a good answer.  My first thought was that what I go through is nothing compared to what Russell or Susan have been through.  I don't have a right to complain because I'm not the one who is sick.  This question confounded me for some time.  What about me?  Why do I do what I do?

In my situation, I get this bizarre adrenaline rush when we come to the point of having to head to the Emergency Room.  My mind shifts into hospital mode.  I'm ready to do battle.  This is good and bad.  It is good to not be a victim and to be a strong advocate, but you have to balance that adrenaline rush with being sensible, being cooperative, and realizing this is not about me.

It has not been easy to realize that in a twisted way I enjoy the health care - high wire act.  It's really important to use that positively (not negatively).  It's that adrenaline rush that motivates me to try to make positive changes in health care.  To do the volunteering that I do and to share our experiences.  It is also important that it doesn't become all consuming.  At some point you have to let it go.

Prior to our trip to Edmonton only a few weeks ago for Susan's cardiac surgery, I got a stern lecture.  Prior to boarding the plane Susan sat me down and got a few things clear with me before we once again entered hospital world.  Susan knows me really well and she knows when I get this hospital adrenaline rush that I tend to get a little intense.  Trust me, she is not the only one to have noticed this.  In her instruction to me, she flat out told me to "dial it down."  "Don't make a big deal over every little thing."  The lecture wasn't exactly what I WANTED to hear but it was what I NEEDED to hear.  She gave me permission to relax.  Thinking about what she said on the flight I re-thought my approach to being an advocate.  To prioritize the things that really mattered.  Let go of the insignificant things.  It made our whole experience in Edmonton a lot easier for me because I wasn't wound tighter than a drum.  I did a lot more observing and watching.  I let staff do their jobs.  I saw some goofy things happen and realizing they weren't going to be a big deal...I just let them go.

Everyone deals with stress differently.  Over the years I have learned some techniques that work for me.  Susan and I have discussed what we have been through many times and have discussed the effect it has had on our outlook on life and how it has changed us.  I am uncomfortable calling it PTSD.  That is a clinical term that I am uncomfortable with.  I believe is thrown around far too recklessly.  Regardless of what kind of label you put on it; the fact remains that we have been permanently affected by our experiences.  One of the most difficult things for me to deal with after my "hospital adrenaline rush" is settling back into everyday life and doing the mundane.

If I were to recommend anything as a result of our experience is that understanding yourself and taking care of yourself mentally is something that everyone should take seriously.

Medical Errors or Communication Errors

Looking at my last few posts, I noticed something.  My last few posts have spoken favourably of the health care system.  Ironic, because I don't often feel that way.  The health care system in Canada has many problems but there certainly are centres of excellence that DO exist.  One way of trying to improve our system is to look at components of the system that work, try to understand them, and then duplicate them.

Being involved in health care as a volunteer, advocate, and leader I get to hear many horror stories about health care.  Many people will tell me about their negative experiences.  Some stories are quite shocking but most of the time I find myself asking some questions.  I am quite perplexed by people who have been exposed to health care for a total of a week and are suddenly health care experts.  Trust me; it's not that easy.  I have been immersed in this world 24/7 for over 8 years and I still feel like a student on their first day of school.  Health care is complex.  All the more reason that we as non-health care folks should be asking questions.  Questions can spark discussions which can lead to understanding.

I have been thinking a lot about Susan's surgery that occurred just 6 weeks ago.  Susan's surgeon, Dr. Ross (Edmonton surgeon), is about as nice a person as you would ever want to meet.  He is the kind of person who doesn't say things just to hear the sound of his own voice.  When he talks; I listen.  He is also a seasoned pro with tons of experience.  He also did Susan's surgery 7 years ago and also saw him many times when we were in hospital with Russell.  We know each other.  I just wanted to be clear on that point as I share some of the reasons why Susan had to have a second septal myectomy.

In June of 2009 when Susan had her first surgery I received a phone call from Dr. Ross after they had just completed Susan's surgery.  He explained the results to me and that the pressure (LVOT) in Susan's left ventricle had been significantly reduced.  It was reduced to the extent that Susan should feel a lot better.  That proved to be true as Susan did feel a lot better.  He also explained to me something unique about the anatomy of Susan's heart.  He explained that he found tissue attached to her mitral valve.  This was the first I had heard of this.  He also noted this in his surgical report and made notes for a possible repair if this anomalous tissue became an issue in the future.  We asked Dr. Ross what the likelihood that Susan would need a second surgery sometime in the future?  He stated that the chances of that were unlikely.  He stated in his long career he had never had to do a myectomy re-do.  Famous last words.

In 2013, when Susan started to have some recurring symptoms, we raised this issue of the mitral valve with our cardiology clinic (in Winnipeg) but nobody really paid any attention to us.  Not having a really solid anatomical explanation of why Susan was having symptoms again, they started talking to us about stress and possible psychosomatic reasons for the symptoms.  When Susan was forced to call 911 and go to Emergency this did prompt some action.  We got in to see one of the cardiologists and they did an echo and a heart cath was ordered.  The heart cath proved to be a waste of time because I am convinced the Doctor who did the Cath got a bogus result.  Susan does not fit the normal profile of their cardiac patients and they did the standard investigation which didn't take into account Susan's specific heart condition and to specifically investigate based on her anatomy and her specific symptoms.  Our frustration was confirmed in December of 2015 when a second heart cath was ordered that produced vastly different results.  When the Doctor reviewed the results with us we asked about the result of the previous heart cath.  He said he had reviewed the results from the previous cath and he described the LVOT pressure as "under-reported".  That is Doctor speak for ... it was a waste of time because the doctor didn't know what he was looking for.  Regardless of whether the 2013 cath was a waste of time or not; Susan was still having profound symptoms.  Now that we had some solid numbers, the referral was made back to Dr. Ross for a myectomy re-do. 

In March, of this year, we were forwarded an email from Dr. Ross.  He had reviewed Susan's chart and imagery.  He was being asked to do a second myectomy but from the start, he immediately focused on the valve issue.  Something no one else did.  He was proposing not only a myectomy re-do but also the valve repair or possible replacement.

After Susan's second surgery in August, we had a good opportunity to take the time to discuss the results with Dr. Ross.  He was clear that he thought the big issue Susan was having was related to the valve.  He removed the tissue that was not supposed to be attached to the valve and he observed everything functioning very well.  Looking strictly at the numbers the results were better than the surgery 7 years previous.

We also had a lengthy discussion about why he did or did not attempt to repair the valve back in 2009.  The reasons were quite simple.  You don't mess with something that is working.  At the time the valve seemed to be operating fine, with only mild regurgitation. If it ain't broke - don't fix it. It is a conservative and pragmatic approach.  The surgeon got the performance he needed and once he had a desirable outcome his decision was to stop.

7 years later Dr. Ross clearly told us that he should have repaired the valve in the first round.  Knowing what we know now.  Hindsight is 20/20.  Dr. Ross also added another comment.  In 2009, prior to the surgery, the valve was never discussed.  He told us he felt uncomfortable manipulating the valve, in the OR, without having discussed this with us first.

If we have learned anything about the practice of medicine is that it is certainly not black and white.  In some cases, it seems more like voodoo than hard science.  Having gotten to know many health care providers we have lost the mystique of the infallibility of these highly skilled professionals.  They are humans, they make mistakes and have lapses in judgement.  We need to get past that as patients and realize that we need to actively participate to give the Doctors the appropriate information for them to make the "right" decisions.  We have had many discussions with Doctors that ended with the exasperated comment ..."I don't know"!  That is the moment I know I am getting some honesty.  Dr. Ross made a judgement call 7 years ago.  Doctors make judgement calls every day.  Some of them are right and some of them are wrong.

Did Dr. Ross make the right decision 7 years ago?  Honestly, I don't know.  Having discussed this with him, I certainly understand his logic and I believe his logic was sound.  It was sound in spite of the fact that if we had known more, at the time, we could have prevented Susan from having to go through a second open heart surgery and it frustrates me to say that.  The bottom line is that our Doctors and I don't have a crystal ball and can't see the future.

Why am I sharing this story?  From the text above, we were equipped with a lot of information.  We understood the thought process and the parameters of the surgery.  What if all of this information was not shared with us?  To find out that a valve repair could have been done in the first surgery and prevented the second surgery could be very upsetting.  Some might be angry.  Some might even call it a mistake or a medical error.  I disagree.  I disagree because I had the information.  More information than most patients get.  This is why communication is so important.

Most complaints that are lodged against hospitals and physicians are usually a result of some form of communication break down.  This is why it is so important for us to ask questions and in some cases to demand information.  In our experience of these two surgeries, I feel we were given complete information.  The only way that happens is when physicians and nurses take the time to really explain what is going on and do it on an ongoing basis.  If that had not happened, I am sure I would not be waxing poetically as part of a blog post but would likely be writing a complaint to the hospital or something more drastic.  Unfortunately, this level of transparency is rare.  Patients don't typically have our level of access or relationship with our health care providers.  I have expended a ton of effort developing that kind of open relationship.

Because of the experience I have, I read patient complaints from a very different perspective than most.  I can usually pinpoint quite quickly when the communication broke down and how it affected the outcome.  It is frustrating.  The feeling of having incomplete information and not trusting your Doctors is traumatic and adds stress to an already stressful situation. 

We have to spend more time building the relationships between doctor and patient to prevent catastrophic failures.  From the patient perspective, we have to own our health care and ask questions and get answers that make sense to us.  This isn't the sole responsibility of the health care provider.

In my mind, our experience and the need for effective medical communication prompts several questions.

1)  How do we develop open and effective patient-doctor relationships?  How long does this take?

2)  What about the patient that does not want to be engaged - one that just wants to be "fixed."

3)  What are the barriers to effective communication?

• Patient Personalities
• Age
• Archaic paternal policies and procedures
• Poorly trained staff?
• The attitude of "you're on a need-to-know basis and you don't need to know"
• Others

Crossing the Line: Advocacy vs Abuse

In recent years I have become a huge proponent of peer support in health care.  We have been lucky enough to have been influenced by many other families who are going through circumstances similar to ours.  We need quality role models to help us all become better advocates for the people we care for.

There are many character traits in people who I have seen who I believe are quality advocates in health care.  A relentless thirst for knowledge and information.  Persistence in the face of many obstacles.  Empathy for the person they are caring for and exceptional skills in negotiation to convince our teams to listen to our concerns.  The one trait that is rarely talked about is that of basic manners that we were all supposed to be taught as kids that some think they can be excused from just because they are experiencing an adverse situation.

I wrote this post after I read a blog a couple of weeks back from a noted blogger, Carolyn Thomas, who has a phenomenal blog (Heart Sisters) that contains a wealth of well researched topics related to women's heart health.  The topic of this blog post was about the poor behaviour of some patients and why it isn't an excuse to abandon some of the most basic manners we were taught as children.  It's a great read and applies to many other aspects of our lives.

Heart Sisters: Being Sick Doesn't Excuse Being a Jerk

I read this blog while I was enduring a "loud mouth" in the Pre Admit Clinic while we were preparing for Susan's (my wife) heart surgery earlier this month.  Apparently this "person" thought the more obnoxious he was the less time he would have to wait.  I've seen this kind of thing before.  It is surprisingly common.

In our journey through the health care system I have seen many examples of reprehensible behaviour by patients and families.  They range from terse words to what I would consider outright abuse.

I have seen parents place webcams in their children's rooms to "spy" on staff.

I saw one "Mom" verbally abuse staff on a regular basis.  The abuse was so bad, and so frequent, that nurses would routinely leave this child's room in tears.  It turned out that this "Mom" was a crown prosecutor and used her considerable skills to prosecute the hospital staff on almost a daily basis.

One situation I found particularly disturbing.  During one of our stays Pediatric ICU we observed a parent who's child had just come out of surgery. As it got later in the evening the parents were preparing to depart the ICU and head home for the night.  Without warning the Mom absolutely "lost it" on her bedside nurse.  This took a lot of people in the ICU by surprise as everything up until that point was very amicable.  Without any provocation there was this sudden explosion of vitriol.  After the "dust up" the parents quickly departed for the night leaving the staff puzzled and wondering "what was that all about?"  I knew what it was.  The parents in a premeditated manner were sending a message before leaving their daughter's bedside.  "Don't you dare leave our daughter's bedside...or else!"  A not so subtle bullying tactic. Scripted and staged for maximum benefit.

It is true that many of these families were dealing chronic or life threatening health issues; but does that excuse the abusive behaviour?  Not at all.  In fact they risk alienating the people who were in the best position to support their family through a very difficult time.  They also isolated themselves from other families who could have provided much needed support.  Instead, they chose a very unfortunate path.

The examples I have cited are extreme.  However, it is these experiences that have made me think of how I can advocate but still be respectful.  Many time we as caregivers and patients can be impatient or less than respectful with health care staff.  Advocacy is about walking a very fine line between being engaged and proactive or being obnoxious and rude.  At times we all need to take a deep breathe and ask ourselves "Am i being part of the solution - or part of the problem"?

Being a strong and effective advocate does not mean we have a license to behave in any way we like.  We are imperfect humans dealing with a health care system that is also less than perfect.  Differences of opinion are inevitable.  Should we accept everything our health care providers tell us?  No...but that does not mean we need to revert to infantile behavior and risk alienating our care team.

As I stated in the beginning of this blog, I am a strong proponent of peer support.  Families, caregivers, and patients supporting each other.  When you meet others who are going through similar experiences there is an instant connection and understanding that Doctors and Nurses just can't provide. We all get frustrated and that is why it is important to talk to others and share our experiences. We can discuss what works and what doesn't.  It is a critical support network.  I think being able to confide in another person who "really" understands what you are going through is an effective way to vent some frustration that may prompt some less than desirable behaviour.  Peers can also suggest proactive strategies for effective (not destructive) advocacy.  Peers can also tell you...perhaps you were a little out of line. 

The bottom line is that although I have seen medical professionals behave in a less than respectful manner, the same can also be said of some patients and families.  Respect is a two way street and in no circumstances is abuse of other people ever acceptable regardless of your circumstances.

There is Hope for Health Care

It has been just over a week since we have returned from Edmonton.  We are firmly on the very slow road to recovery.  A separated sternum does not heal really quickly and it is a slow and very painful recovery.  I wish I could report amazing progress and that Susan is up and moving around like normal but that just wouldn't be true.  Just about any sudden movement is followed by a deep gasp, squinted eyes, and a few choice words.  This morning at breakfast I heard a snap, crackle, and pop which did not come from the Rice Krispies.  Yes...the sternum and all their attaching components are starting to heal but it is very slow going.  This means that life for Susan right now is a very slow pace.  I'm helping around the house and doing the "heavy lifting."  This leaves lots of time to reflect on the events of the last few weeks.

Many times i'm critical of what goes on in health care.  To be honest, from the time we got on the airplane on August 1st...to the time we returned home last Tuesday I am hard pressed to come up with anything to be overly critical about.  We had plenty of positive experiences.  What is more impressive is that this is in sharp contrast to the experience we had 7 years ago undergoing the same procedure.  Can Health Systems actually change and improve?  Can the changes become so noticeable that the patient and caregiver can't help but notice the changes.  The short answer is ..."Yes"  So what happened?

The most obvious change over our experience 7 years ago was the physical building.  The Mazankowski building in 2009 was nearing completion, but not yet in use.  We were in less than ideal circumstances, the CVICU was a windowless chamber that was crowded and dismal.  Even staff described it as "that awful place."  The wards were also less than inspiring.  Things were shoved everywhere due to an obvious lack of space.  It is remarkable how just a physical space can make the experience so much better and less dreary.  Fast forward to our experience of early August and we were treated to a spacious CVICU suite with plenty of natural light.  I would also dare say the privacy of these rooms made the ICU almost a serene place.  That took me by surprise.  The rooms on the ward were also spacious...with 2 patients per room we still had plenty of space for visitors.  One of the ladies in the next bed to us had 5 visitors one day and we barely noticed.  There was plenty of space for them.  Everything on the ward was easy to find and relatively intuitive.  I could easily find supplies like blankets, towels, or water.  A very welcoming environment.

The physical space of the hospital was an obvious improvement but after all it is the people who really make things happen.  Staff did a great job at introducing themselves and they were engaged with us enough that we actually got to know their names.  I still recall all of the names of all of the Doctors and nurses we interacted with...and I never wrote the names down.  We had three nurses in CVICU;  all were excellent.  On the ward we had consistency in nursing.  We saw the same nurses on consecutive shifts.   Over a period of  5 days, on the ward, we effectively only had 4 nurses.  That kind of consistency means no repeated introductions.  Not having to repeat yourself is a huge plus and gave us more confidence that the nursing staff had a good handle on what was going on.

Many times you feel like you are abandoned in the hospital.  Someone says they will get something for you and you don't see them for an hour (or more).  This was not the case...we always felt that someone was checking on things and were very accessible.  The consistency and accessibility of the nursing staff was a huge difference in our experience this time as opposed to 7 years ago.  Big change!

One thing that I noticed was the age of the nursing staff, on the ward, as well as the age of some of the patients.   I don't think it is a surprise as education in nursing schools is emphasizing patient and family centred care.  The result is that new nurses are much more in tune with patients needs.  Our ward nurses were likely all under the age of 35.  As an example, one of our nurses graduated from nursing school only a year ago.  However, she had previously been in EMS for 7 years previous.  So, not a rookie by any means.  We also noticed a few of the patients were also under 40.  This is different.  The cardiac crowd tends to be of the 60+ demographic.  Seeing younger patients means patients who have grown up in a different environment and who view health care very differently.  Changes in the demographic of the staff and patients makes change much more likely.  Important to note that a younger demographic does not necessarily mean positive change....change still needs to be managed and directed in a positive direction.  You can't underestimate the value of leadership.  It is also important to recognize the veteran nurses who provide excellent mentors for younger nurses rising through the ranks.  I definitely saw a huge improvement in the quality of nursing.

The one gap that I repeatedly come up against is the issue of discharge.  Having talked to many people who have extensive patient experiences, many feel like being discharged is like falling off a cliff as far as your care and supports are concerned.  The one change, this time around, was that the hospital in Alberta ensured that a home care nurse was coordinated for us here in Manitoba.  As circumstances would have it, we were contacted, by our home care nurse from Selkirk.   The call occurred as we were driving home from the airport.  We hadn't been on the ground in Winnipeg for an hour and we were already getting follow-up.  Our nurse visited us at home and did a brief check up for three consecutive days following our arrival home.  This was a nice support and a good trend to see in post surgical follow up.  We were also asked to make an appointment with our family doctor,  which is another good idea.  It's really important to do this kind of coordinating with everyone involved in your care.

The one reality that cannot be avoided is that going home is a big adjustment.  You go from having all of the staff, equipment, and services (that a hospital offers) to little or no supports in the community.  Caregivers face the brunt of this burden.  It is for this reason that I took time off from work to fill this role.  Although I was busy when I was in Edmonton.  Now that I am home...this is when the work begins for me.  Fortunately, we had booked some help.  My sister hung around for a few days...and my mother in law who helped us a ton 7 years ago is stopping by to help too.

From reading this you would get the impression that we had a very favourable experience in Edmonton and that would be true.  We felt very well cared for.  Was our experience perfect...No...but the amount of changes we have seen have been noticeable and the hospital should be commended for their efforts.  When I raise issues or have complaints about our experience in health care, I have to ensure that the experiences that I am sharing can result in something positive and are not being critical just for the sake of being critical.  When things work well, it is important to identify the positives as and our experience was certainly positive.

Thanks everyone at the "Maz" for our experience.

Day 9 - Home!

We arrive home shortly after 4:00 on Tuesday afternoon.  It is amazing how only a few days away from home feels like an eternity.

We had a noon flight out of Edmonton so we got up and didn't have to rush around.  Everything went very smoothly.  However, every bump in the road or any turbulence in the air pretty much sent Susan through the roof.  She will be very tender and sore for the next few weeks.

Approaching Winnipeg:
The Assiniboine River and Trans Canada Highway

 It was quote humorous on the drive home I received a call from home care.  We had been on the ground in Manitoba an hour and we were already getting follow up.  The rehab process starts up right away.

This closes another chapter, but we know the story is far from over.  The last few months have been very challenging and have been made bearable from many people who have helped us along the way.  A big thanks from all of us.

The Joy of Sleeping in your own bed.
Many have commented on the "Heart" Pillows.Here are Susan's two pillows.
 The on one the left is a little faded and a little beat up after 7 years of use.
The one on the right is the pillow she received this week.

As I have chronicled the events of the last few days I have omitted a lot of details.  The point of this blog was to try to keep friends and family informed about what was happening as we went on this trip.  This has not been a commentary on the state of health care.  Believe me, the amount of things I have witnessed over the past week can provide enough material for a year's worth of blog posts.  The one thing I will comment on is that our experience at the Mazankowski Heart Institute this week has been a very positive one.  I cannot believe how much better our experience was this time around as compared to 7 years ago.  This hospital has made huge changes as they have embraced patient and family centred care.  The new facilities do not hurt either.  It is really encouraging to see a health care organization attempting to get it right.  

A huge thanks to all of the people who supported us through this time...both medically and personally.

Day 8 - The Great Escape

My apologies for this being a little late...but as Susan starts to feel better I get a little busier.  Doesn't leave a lot of time for blog posts and social media.

When I went to the hospital Monday morning, I was greeted by Susan who was starting to get herself together in preparation for leaving the hospital.  The Docs had been by and had reviewed her telemetry from the last 24 hours which seemed to be fine.  Her little blip of V-Tac was probably just normal post op recovery stuff.

Susan's Telemtry came off on Monday morning
When this comes off you are heading home!

With things moving in the right direction and it being Monday...a lot of people were in their offices today.  It gave me a chance to talk to some folks I have worked with as part of the Stollery Family Centred Care Council and I also ran into some other familiar faces from our past.  It was a lot of fun.  A couple of our "associates" from the past stopped by to visit Susan as well.  I am really glad we got to see some of these people. before we left.  Some have played a big part in out lives and it was nice to show them some pictures of our kids and let them know how well Russell is doing.  One of the cool things that I got to see was some of the renderings of what the new Pediatric ICUs are going to look like.  This will be a huge change from where they are currently situated.

Artist Rendering of the new Pediatric ICU at the
Stollery Children's Hospital

It was a lot fun socializing as it does feel like a lot of the pressure is now off, but it is safe to say that Susan and I were anxious to get out of the hospital and getting back home.

I really appreciated Susan's attitude as I brought her all her civilian clothes and she began getting herself ready to leave.  She had a shower, did her make up, and hair.  It was just like being at home...me anxious to go somewhere and her taking her sweet time getting ready...lol.  She was determined to leave the hospital on "her" terms.  I admire that fighting spirit.

In spite of her spirit there is a reality to be faced.  She is only a few days post op and her recovery is a long one.  She has to be extremely careful how she moves and any bump or movement can send her through the roof.  She is extremely tender.  Managing her pain is a challenge as well...she is great on Tylenol and Ibuprofen during the day but sleeping is really painful and she needs a little more pain med for that.  The heavier duty meds make her feel awful.  The whole pain management thing is a balancing act.

We escaped from the hospital just a bit after noon.  We are staying at my Aunt's house which is about 10 mins from the hospital.  It was a nice hurdle to get past; to be out of the hospital.

We were very anxious to get home to see the kids and there was flight that would leave Edmonton a little after 6PM.  Susan felt she couldn't handle everything all in one day...so we decided to stay the night and leave Edmonton on a Noon flight on Tuesday.