Community Mailboxes Come to Selkirk

For those who have read my blog, I mostly talk about health care issues from a personal perspective.  In between our frequent medical adventures, speaking engagements, and volunteer activities I actually have a job.  Apparently I still need to pay the bills.

My job is actually a lot of fun.  I get to travel a bit and see the country.  I work with a great group of people who are dedicated and provide me with a lot of support.  For the past 5 years I have been one of the project managers working on upgrading Canada Post's infrastructure.  A $2 B investment.  Last year I had the privilege of joining the team that is bringing Community Mailboxes to nearly 5 millions customers across Canada.  Up until now most of my work has been behind the scenes and much of our work would go undetected by our customers.  The Community Mailbox (CMB) Project is the complete opposite.  It effects how customers get their mail and is very visible to most Canadians.

This fall our CMB project comes to Selkirk.  We "Go Live" on October 26.  Selkirk is a mere ten minutes from my home.  These are my neighbours.

Recent Installation of A Community Mailbox in Selkirk, MB

It has been fun working close to home.  A couple of weeks ago I joined one of our delivery services officers and did some inspections of the sites that are being installed in Selkirk.  It was really nice to get out of the office and do some "real" work.  We had a chance encounter with two of our customers who were out for a walk on a beautiful fall day.  Two of our seniors who were very interested in what we were doing.  As many are well aware, there are many people who are concerned about the loss of door to door delivery. The reaction from these two ladies was typical of the response we get.  The first lady was upset with us.  She explained how inconvenient the new boxes would be.  She went on to state how it was so easy for her now to just stick her hand out the door on a cold day and grab her mail.  She didn't need to get out of her pyjamas or even go outside.  It was so easy.  What she said is exactly true.  Door to door delivery is very convenient.  We understand, for some this change is less than ideal.  Without getting much of a reaction from us, the first lady walked away and i didn't get the impression she was very pleased with us.  The second lady had a much different response.  She was asking how the new boxes worked, and inquired when she might be getting her keys etc.  We showed her the new mailbox and briefly explained how she would get her mail.  She also asked about parcels.  We also showed her the parcel compartment and the process she would need to extract parcels from the box.  She seemed very curious and very intrigued.  We could tell she was kind of excited about something new.  It was very positive response.  So in our chance encounter we had one "for" and one "against".  Very typical of what we see.

I think many people who are against the changes we are proposing do not realize the phenomenal cost of delivering mail door to door.  Is it a service we (as Canada Post) would like to continue and maintain a very proud tradition.  Is it possible to continue? Absolutely.  Is it feasible?  Definitely not.  I do not want to get into the financial models or data that shows how costly door to door delivery is.  If you are interested, there are some good papers on the topic published by the Conference Board of Canada and the Macdonald-Laurier Institute.  No one argues that ending door to door delivery and implementing CMBs will save Canada Post millions of dollars.  Taxpayer dollars that can be spent on roads, health care, and many other worth while programs.  For those who think taxpayers should subsidize Canada Post I would propose that we agree to disagree.

For my neighbours in Selkirk; I hope the transition goes very smoothly.  There is a great team of folks in our call centre who are willing to answer your questions and a great deployment team who will ensure everything transitions smoothly.  One comment we hear over and over again is that this may be a great opportunity to go to your CMB, pick up your mail, and say "hi" to your neighbours.

Donald Lepp
Project Manager, Canada Post
CPC 2.0 - CMB Project

Do We Get Better Health Care? ...Yes we do.

This has been another fun filled week of working the health care system.  To explain all of the events that have happened in the last couple of days I have to back up a few months.

On May 20th we had a scheduled visit to the Emergency Room at Children's Hospital in Winnipeg.  To make a long story short we ended up waiting 5 hours for what ended up being a simple injection.  To say we were ticked off is an understatement.  The lack of communication and pure incompetence of a broken health care system was on full display.  It was a case study in silo mentality where various players in the system failed to coordinate a fairly simple task.  As a project manager this drove me nuts.

As I tweeted some of the events of that morning, the Health Critic for the Progressive Conservative Party, Myrna Driedger, picked up on some of my tweets.  She discussed a few details of our experience; as scheduled appointments to Manitoba's ERs have been a long standing issue as these numbers have increased despite numerous promises from our provincial NDP government to curtail the practice.  She invited me to come to question period where she brought the issue of scheduled visits to our health minister Sharon Blady.

As I was referred to (by name) in question period I drew immediate attention from the Health Minister's staff.  I was immediately contacted.  I had a very pleasant conversation with one of the Minister's assistants.  They asked if they could investigate the issue on our behalf.  I agreed, but later had second thoughts.  I contacted the Minister's office later that week and decided this was something I wanted to tackle on my own.  I know many people at Children's Hospital and I am a parent rep on the Child Health Quality Committee (CHQC).  With Russell's Doctors I had at my disposal all of the people I needed to investigate this issue on my own.  This was going to be fun!

Russell's Cardiologist is great and she did a ton of work on my behalf.  We were able to identify several problems, that we encountered that morning, and we rectified them.  I think there were several people who learned something as a result.  I prepared a brief report for the CHQC and got some mixed responses but overall it was a good discussion.  As promised, I sent a copy of my report and a history of our experiences in health care to the Minister of Health.   I received an response from the Minister last week.  I would comment on the content of the letter from the Minister but I am not accustomed to providing gratuitous profane outbursts.

This brings me to the events of this week.  Early Tuesday morning Russell woke us up and was obviously in some significant discomfort.  He was reaching for his belly and was writhing on the floor.  There wasn't any discussion, we were off for another adventure in the Children's Emergency Room.

Russell examining Jake the Giraffe:
Waiting for an ER Doc to yell at me for letting
my son play with expensive hospital equipment

Unlike our visit in May, we waited for absolutely nothing.  We arrived at about 5 am.   We were taken into treatment room almost immediately.  We saw a Doctor with about 15 minutes.  This was awesome.  Seeing how much discomfort Russell was in, they got an IV in him very quickly.  They were able to take blood and gave him some much needed morphine.  That settled the boy done very nicely.  After a few more questions and discussion we were off to get chest x rays and an abdominal x ray.  This visit was totally unlike our experience in May.  The situation we consistently run into when we talk to the staff is the fact Russell has a heart transplant and he gets special attention.  He is complex and everyone starts to pay attention when he rolls into any clinic or ER.  This was certainly the case on this trip.  Our initial ER Doctor has seen us before.  He remembered us.  After shift change we met our new Doctor.  She happened to be the Doctor who was on service when Russell crashed in Emerg 7 years ago.  A point I reminded her about.  Our new nurse also popped in to do vitals and check in with us.  She also spent a shift with us on one of our previous visits to the Emerg.  At about this time the unit manager showed up.  I know her from our CHQC.  Do you see a pattern?  What is the old American Express commercial tagline "Membership Has Its Privileges."

Our entire experience on Tuesday was positive.  Good communication.  We knew what was going on and what the game plan was.  When we waited we knew why we were waiting and what we were waiting for.  When the Drs were guessing; they admitted it and explained why.  Textbook care.  The interesting part came when we were planning on leaving the ER.  The Doctors arranged for Russell to keep his IV in place and we planned to do an IV dose of antibiotic the next day.  We were planning for a scheduled visit to the Emergency Room for the next day.  I couldn't help but laugh.  This was exactly the issue that brought me to the Manitoba Legislature and received media attention in May.  I was committing an unpardonable sin in the ER.  A scheduled visit.

My fear on coming back to Emerg this morning was that instruction were not passed on to the staff who were on service when we came in.  If we got triaged that would be a disaster.  By policy we should go through the triage process.  We were circumventing the rules.  When we arrived this morning i got a little bit of resistance until one of our nurses recognized us and brought us right into a treatment room.  We talked to the Dr on service, got the IV treatment, and left the hospital in less than 90 minutes.  We were likely in and out before many patients would have been seen by a Doctor.  We are going back tomorrow morning for another IV dose.

So why did this trip work out so much better than our trip in May.  Very simple.  It wasn't busy.  5:00 AM is a great time to go to an ER.  Also. from beginning to end the ER was in charge of this trip.  There was very limited interaction with other specialties.  When any hospital department has control over resources to get a job done they will do fine.  It is when you get numerous specialties and departments involved it all breaks down.  This is certainly the case when we deal with Cardiology.  Our appointments their go so smoothly because they control the whole process internally.  Hospital organizations do not play well with each other. The other major component to a successful trip was us.  At a basic level we know how the hospital works.  We know where to find things.  We know some of the terminology.  We also know that we can't leave things to chance.  We ask questions.  Add all of these factors together and you get a very efficient trip to the ER.  It doesn't happen often so we are enjoying the moment.  It is experiences like that convinces me that we can do so much better and do it more consistently.

So, my questions is; Do we get preferential treatment in the hospital?  Yes and No.  There are things we don't have control over and hospitals are huge.  We don't have connections everywhere.  Where we have a huge advantage is that we are able to converse and communicate very differently with staff who know us because we have credibility with them.  Relationships that we have taken great care to cultivate.  Even when we had our messy trip to Emergency in May our experience was made a lot less horrific because we had people we could phone (and complain to).  I'm able to text our cardiologist and get answers to question in mere minutes.  Not many people have our level of access.  In that sense we have a huge advantage.  It is that level of access that probably saved Russell's life 7 years ago.

That is what frightens me.  Not everyone can advocate for themselves.  If you haven't been in a hospital in 30 years it is like being in a foreign country where you don't speak the language.  In addition,  we have trusted care providers who actively advocate on our behalf.  We are very fortunate and...yes...probably a little spoiled.  I don't know where we would be without the resources we have.  Does everyone have access to these resources.  Definitely Not.








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Where It All Started: Chapter 1 in a Patient Story

Sept 11, 2001 is a date everyone will remember.  For many of us who watched video of two airplanes hitting the twin towers we saw the world change in front of our eyes.  We were bystanders to that tragedy. For those who were in New York and had friends and families killed in those attacks the experience was so much more personal.  I have no idea what that would have been like to experience.  I am also sure that each person who experienced that day (first hand) has personal feelings and memories of that day that are unique to each individual.  It is impossible to truly know what it is like to go through something like that unless you are there.

This is the struggle I have every time I try to share our story of what happened on the evening of Oct 2, 2008, but like those who experienced 9/11 our lives were forever changed and we will never be the same again.

The post written below was writedn seven years ago, a few days after we arrived at the Stollery Children’s Hospital. As I re-read this I realize how many more details and experiences I omitted.  Perhaps someday I will re-visit those horrific hours and put them down on paper.  

When I talk about patient experience or the role of the caregiver.  This is what I am talking about.

Posted Oct 9, 2008 12:23am

The events leading up to our “trip” to Edmonton began with a trip to our pediatrician on Wednesday for Russell’s 2 month boosters. Everything went off with no real excitement. That night Russell had a normal feed but promptly threw everything up. Obviously he was not feeling well, perhaps some reaction to the shots.

In the morning (Thursday), Russell had a normal feed and everything seemed to be going well. During the day, he was a little fussy about eating. This continued during the afternoon. Late in the afternoon, Susan began to get concerned as he had not been eating well all day and she noticed a yellow tinge to him. When I got home from work, I tried to feed him as well but he was not interested. At this point in time, we were getting more concerned as he had this yellow colour, was not eating, and was quite lethargic. He had very little energy. We made a few calls and contacted one of the cardiologists who was on call. He suggested that we head to Emergency, as it would just be a good idea for someone to check his vitals and have a look at him. If it was not cardiac related and just a “kid-thing” they would just send us home and that would be the end of it.

We arrived at Emergency around 10:30 PM on Thursday. As expected, when we arrived Russell was nice and pink and looking quite great. We were feeling a little silly for being there, but we told our story to the triage nurse and they found us a treatment room. A resident gave Russell a quick once-over and didn’t seem too concerned (We always have trouble reading Doctor body language). We waited in the treatment room for some time. Russell seemed OK but yet not himself. Periodically a nurse would check on us while we waited for the Doctor on duty to give Russell a look. During one of these visits Russell turned white as a ghost and the nurse observed his sudden change. She quickly called for the resident who was close by and she observed the sudden changes as well. Russell let out a cry that we had never heard before and it was obvious to us that he was in some form of distress. Susan and the nurse settled Russell down and got him comfortable but you could tell everyone was on edge and the ER Doctor was summoned. A quick exam by the ER Doctor and Cardiology was paged for a consult. Dion from the Variety Heart Clinic (Pediatric Cardiologist) was at Emergency very quickly and immediately was concerned about Russell’s condition. He did an Ultrasound which confirmed that Russell’s heart was functioning at an even lower level than at Russell’s last visit to the clinic. He relayed the concern to us and stated that he was in bad shape and that they wanted to get Russell to the ICU as soon as possible.

From this point, things got very bad; very quickly. At about 2:00 or 2:30 AM Russell was being transported down the hallway toward the elevator to take him to ICU when he “seized” or “lost consciousness.” I will always remember the nurse tapping Russell on his chest and calling to him by name trying to get him to regain consciousness. He was immediately whisked into a treatment room and we were asked to wait in one of the family rooms. For the next hour and a half...we waited. At about 5:00 we were allowed to see Russell. The ICU team had begun the process of stabilizing him but at this point he was certainly not stable.
At this point, he was brought upstairs to the Paediatric Intensive Care Unit (PICU). We waited a little while longer until we were brought into his room in PICU. I will always remember the ICU Doctor, standing at the threshold of Russell’s room, arms crossed, and looking totally focused. She directed her ICU team with conductor-like precision. In the midst of all of the activity she took the time to explain all of the efforts being performed to stabilize Russell. The waiting continued. The next few hours involved adjusting medications to get Russell’s vital signs to stable parameters. We did not know how much better Russell would get as we did not know what caused the “episode”. Did his heart give out? Was it something else? We didn’t know.

After we brought Russell into Children's Emergency;
He crashed in the Hallway and was immediately
whisked away to the resuscitation room.
The next time we saw him he looked like this

The next few hours we waited and we began to make some plans to stay at the hospital as we knew we would be there for some time. Things were starting to stabilize but with conversations with the cardiologist we knew plans were in the works to find Russell a bed in Edmonton. We had no idea how long this process may take. We were informed that if Russell’s heart had really given out that Edmonton had capability to provide mechanical assistance to Russell’s heart to help it pump. This would require surgery in addition to a heart transplant that now seemed inevitable.

During the mid-morning we decided to start getting prepared for an extended hospital stay. I went home to get an overnight bag prepared for Susan, so that she could stay with Russell in the hospital. After I went home, Susan tried to get some sleep in a room provided by the hospital. After Susan fell asleep she got a phone call shortly before lunch from the Variety Heart Clinic. She was informed that there was a bed available in Edmonton and that Russell was scheduled to fly out at 1:30 that afternoon via Air Ambulance and that we were to fly out later that afternoon. Susan immediately called me to let me know that we were packing for a little more than an overnight stay. In fact, we were told to be prepared to stay until we got a transplant. To say we were a little shocked was a bit if an understatement.

This began a flurry of activity that found us on a plane heading for Edmonton at 6:00PM that evening and after a layover in Calgary we found ourselves in the PICU at Stollery Children’s Hospital at the University of Alberta Hospital.

At about 10:00PM we saw Russell and saw that he was stable and survived his journey well. After 41 hours with no sleep, we found ourselves in Edmonton with no clear plan and no idea when we might return home. We had a very sick little boy with a failing heart and a daughter 800 miles away. At this point we wished each other a Happy 16th Anniversary and we went to our hotel and went to sleep. The journey had just begun.

Seven years later we are still very much on that journey.  Our life is consumed by health related issues and trying to manage day to day life with some very unique challenges.  I wish we had an ending to this story but I guess that is something to be thankful for.  The pages of our future have you to be written.  It should be interesting.

Health Care and Government Deficits

There is a very compelling battle taking place in Ontario between Ontario Physicians and the Health Ministry.  Spending caps and cuts to physician fee per service rates have enraged the Ontario Medical Association.  This is a complex topic that I will not pretend to explain in detail here (or even fully understand).  What I am interested in discussing is how did the Ontario Liberals get to this point where they have put Ontario Physicians squarely in the cross-hairs of health care cuts?

If you check out the Ontario debt clock; the Ontario provincial debt is in the $291 Billion dollar range.  That's Billion with a "B".  The interest on that debt is a staggering $11 Billion.  That interest payment could go along way toward paying for Doctors and Nurses.

Many who argue for running deficits to pay for much needed social services will state that government debt is not the same as household debt and there is some truth to that.  However, there is one thing that massive, out of control, debt of any kind will do.  It limits the options of what the government can do and what it can spend it on.  If debts get our of control gavernments at some point are forced to make cuts; this is the case in Ontario.

Unchecked government debt is a cancer on the public purse.  It is also something that NDP and Liberal provincial governments seem to be OK with if it is in the interest of the public good.  That logic can only be sustained for so long.  Eventually the mounting debt and crippling interest payments begin to snowball and force the most ardent champions of social justice to pay the "financial piper."

This has what has happened to the provincial Liberals in Ontario and is certainly the case for the Manitoba NDP.  They can't ignore their debts any longer.

The challenge in formulating any budget is finding a balance.  You have to find balance between fiscal restraint, public safety, and maintaining all forms of infrastructure that government are relied on to maintain.  This is not easy. So who has the Ontario Liberals targeted.  Ontario Doctors.  Why?

During the federal election and in any election for that matter we hear many on the left say the "rich" should pay their "fair" share.  We have heard this from Barak Obama, Kathleen Wynne, and most recently from Tom Mulcair and Justin Trudeau.  They 1% can certainly afford to pay a little more.  These comments do resonate with the public because most of the public do not identify with the 1% crowd.  This may be why Ontario physicians have become targets.

It is difficult to ascertain what an average physician earns in Canada.  The calculation and data make that determination somewhat challenging.  Some estimates put the average salary of a physician in the $240,000 range.  What is interesting about that is the $240 K is significantly higher than the threshold of the rarefied air of the 1% earners. In Canada, the top 1% earn about $191000 annually.   The "rich" "1 %" that the NDP and Liberals want to make "pay a little more" in many cases are physicians.  The recently announced cuts to Ontario physician's is not surprising as it is part of the Liberal platform; as advertised.  This should not come as any surprise.  This is what happens when uncontrolled spending meets harsh fiscal reality.  Difficult decisions need to be made and high income earners will be the first to feel the squeeze.  No matter how socially conscious you are, eventually snowballing debt will catch up with you.  It is a fiscal trap.

Doctors are some of the most mobile professionals out there.  There are many employment options for physicians.  They are not limited to practising in one province.  Our family has been a victim of this.  In recent years we lost our nephrologist to BC Children's Hospital and we nearly lost our cardiologist.  Create a hostile work environment and pay substandard wages.  Doctors will leave.

Health care is important to all of us.  In order to have a healthy health care system requires a great deal of money and the amount of money required to sustain health care is only going to get bigger.  So when you see a tweet, face book post, or advertisement stating that when you vote in the next election to consider health care.  Perhaps what you should be doing is thinking about who is best suited to manage the economy.  A strong and growing economy creates many more opportunities to invest in health care than trying to manage a mountain of debt.

Being A Patient Advocate

I spend a lot of time in hospitals and clinics.  Too much time.  You spend to much time in hospitals when you walk into a clinic and you are greeted like "Norm" from Cheers.  Not kidding; this actually happens.

I am typically in the hospital for one of two reasons.  I am either advocating for one of my "patient" family members or I am advocating for patients as a whole and trying to share patient perspective with hospital staff.

Advocacy makes me uncomfortable.  In that role i am negotiating and sometimes pleading for the interests of someone else.  I am uncomfortable with that role because; who am I to even know or understand what "my" patient is going through.  I can easily get caught between the person I am trying to provide support to and the medical system.  For my family this is a lot easier as I know them very well and understand them for the most part.  When advocating for "patients" as a whole is a whole different matter.  This is why I always emphasize that the only perspective I can share is my own.  I cannot speak for other people's experience.  Since, I got involved with patient centred care, and have been asked to speak on behalf of "patients," I emphasize one very critical point.  Inviting one patient or caregiver to represent the "patient voice" is not meaningful engagement.  Patient experience is diverse and it is impossible for any one person to represent the perspective of all patients.

Being an effective advocate is not easy and as experience has taught me is extremely important.  It is easier to explain this as a caregiver with a child with complex health needs.  When my son, Russell, was an infant he obviously could not speak for himself.  As parents, we had to advocate for him on a constant basis.  There were many health decisions that we had to make advocating on his behalf. Many of these decisions involved subjecting him to procedures and processes that were not exactly pleasant.  We consoled ourselves with the logic that what we were doing was saving his life.  Susan, my wife, reminds me often about the times that we wanted to rip out all the lines and escape with him out of the hospital.  We had to be eternally vigilant with the care my son received as we were the only two people who were with him during his entire journey.  We often had to provide context to nurses and physicians that would read dubious notes placed in my son's chart.  It seems obvious the need for an advocate with a child.  This is why pediatrics is far more evolved when it comes to patient centred care as it is somewhat of a necessity.

In the adult health system, it is an entirely different ball game.  When I accompany my wife to her appointments I sometimes get disgusted looks as I present concerns or ask questions on behalf of my wife with her in the room. Keep in mind that she is living with a chronic illness and any physical activity leaves her exhausted.  Many times she needs someone to advocate for her because she is just too physically tired to engage in a discussion.   Although it is more common now to have a caregiver accompany a patient, it is usually an adult caregiver accompanying an elderly parent.  Being a couple in our 40's doesn't fit that mould.  That is usually one of the bigger challenges we face is that our health situation is somewhat unique and anything that is "unique" usually causes fits of hysteria from our health care providers who seem to function only on well established practices and protocols.  They don't do "unique."  After one of my wife's appointments we will usually discuss the appointment on the way home.  We always walk away having heard different things.  This is why it is so important to have two people in the room.  You retain a lot more information with two sets of ears instead of just one.

I live in constant fear for people who enter into the health care system unprepared like we were.  Not knowing what questions to ask, or knowing the "lingo" can present some real challenges which can be life threatening if real issues are not dealt with in a timely manner.  I am not exaggerating how important it is to be a strong advocate for yourself or the people you care for.

For me and my wife, we are constantly learning.  Every encounter we learn something new.  I certainly would not consider myself as an expert.  I often describe my level of knowledge as "just enough to be dangerous."

I wanted to pass along 3 key points that caregivers should remember.  These are not researched, peer reviewed, recommendation.  They are personal feelings from my own personal experience that have worked for me.  Having heard a lot of patient stories and being a volunteer these points seem to ring true for other people as well, but if you have another point of view I would love to hear about them.

Credibility

When you are caring for someone with a chronic illness you have to be prepared for the long haul.  I cannot tell you how important it is to be able to work with health care providers and get the service you need.  You become a part of the care team the same as Doctors, Nurses, and Technologists with one significant disadvantage.  These professional are not accustomed to working with "you" and they have a huge technological advantage over you.  You may be only working with a high school level of Biology which was the circumstance I was in.

How do you get a group of highly trained professionals to take you seriously and treat you like part of the team?  What I tried to do was establish my credibility.

One thing I repeat to myself as a supporter/caregiver is that I need to be part of the solution and not part of the problem. Offending the people who are caring for you or a loved one is not productive.  There are many approaches you can use to negotiate and convince medical staff to work with you and get things done.  Yes, you can demand and bully your way but i find that approach is effective only on a temporary basis.  Staff will start withholding information and the relationship may devolve into the "us" vs "them" mentality.  You will get less information and get more and more frustrated.  You CANNOT alienate the medical team who is caring for you.

One of the tools I use to be a credible care provider is to do my homework.  Do some research and educate yourself.  There is a wealth of information out there.  More importantly ask questions from your bedside nurse or when you get the chance, the doctor.  This is a lot of work and you have to pick your moments but you want to have intelligent questions ready.  Questions lead to interaction and two-way communication.  Take notes, or do what you need to do to make sure you are engaged.  This can also be therapeutic and give you a sense of empowerment.  To be very honest, most of what I know about health care I learned in the ICU.  Hours and hours in the ICU.  ICU nurses are some of the best educators out there.  Learn to be their friends.

When staff realize that you are engaged and are genuine in your concerns they are more likely to want to work with you.  The more comfortable they are with you the more likely they are to share information more readily.  It's about building a relationship.

I am stunned at some of the tidbits of information I have come across as the "professional" barriers come down.  You begin to realize these are more than doctors and nurses but real human beings.  The staff also begins to get to know you as a person as well.  This is the beginning of mutual respect (something i discuss later).  A really interesting example of this respect was when my infant son was being considered to be a recipient of a Berlin Heart (VAD).  Our team in ICU was conducting rounds with us and were encouraging us and sharing all the possible upside of the device.  During the conversation another ICU Dr walked by and over heard the conversation.  He stopped for a moment and commented that the last baby they had implanted with the VAD had died due to a brain hemorrhage related to complications related to anti-coagulation.  Boom!  That snapped us back into reality in a quick hurry.  The look the Dr received from the team who was conducting rounds was amazing...I am sure they wanted to kill him for saying that.  This was not the typical well rehearsed speech normally conveyed to parents; it was an example of a Dr letting his guard down and being bluntly honest with us because he knew we needed the truth and he had enough respect for us to share reality because he felt we were "part of the team."  Which leads me to my next point..."honesty."

Honesty

This is not about telling the truth as in "facts."  This is about feelings.  Having a serious illness is no laughing matter.  It sparks a lot of emotions and reactions.  Don't try to be someone you are not.  This is about being truthful with yourself.

Being in a hospital sucks.  Being sick sucks.  The medical processes usually suck.  No one chooses to be ill.  Keeping the stiff upper lip and putting on a brave façade doesn't help anyone.  If you are scared; say you are scared.  If you're apprehensive, admit it.  Maybe because I'm a man, and emotionally repressed, this may mean more to me than others, but there is something liberating about being honest about your feelings.  I am not condoning becoming an emotional basket case but you have to be honest with yourself about where your head is at.  If you are supporting a family member who is dying, don't go falling apart in front of them but if you are struggling with your feelings talk to someone.  It could be a friend, chaplain, councillor, whoever; but you can't keep things bottled up.  Maintaining your mental health is really...really important.  You can't be any help to anyone else if you are falling apart inside; it will eventually catch up with you.

I recall one night when Russell was in PICU, and this was some of his roughest moments.  I usually went back to the hospital in the evening as Susan usually did the early mornings.  I recall watching my son struggle.  Things were tense and very precarious for him at that time.  I was not in good shape, emotionally.  The bedside nurse knew it but didn't really know what to say.  I can't remember how it happened but we called the ICU Dr over just to get a feel for how he thought things were going.  I remember distinctly the question I asked the Dr.  "Can you tell me something so that I can go back to the hotel and sleep tonite?"  That was pure honesty.  It also caught the Doctor's attention.  The smile on his face got very serious and he paused, because he knew that the next few sentences out of his mouth would have a big impact on my frame of mind.  I shared blunt honesty with him and I got honesty in return.  I will never forget that.

Respect

Medical professionals are smart and highly skilled.  Don't ever forget that.  If you can get them to work with you, you can accomplish many amazing things.  I have been exposed to world class doctors and nurses and have been able to learn a lot from them.  I have some very specialized knowledge but I have to remind myself that I don't have the training and background that all Doctors have.  I am not a Doctor and I need to be respectful of my role.  As a care provider I am their for the patient.  Not to play armchair cardiologist.  My wife's cardiologist gets great joy in putting me "in my place" when i'm attempting to be a little too "smart."  It's just that gentle reminder I need to make me realize that I need to let her do her job.  However, living with the patient everyday I can help provide important info (context) that can help our doctors do their job.  Another role I have as a caregiver is that I can help with transition from the health care environment to our home environment where care does not stop.  Care continues at home and this is where a caregiver's role is even more important in helping create a continuum of care.  Because of this continuing care and the long term nature is why you have to be prepared for the long haul that can be life long.  Not for the faint of heart.

Giving medical professionals respect is even more critical when things don't go well.  Having participated in many committees and boards i have learned a little more about how the system works from the inside.  It is frustrating to see great doctors and nurses literally handcuffed by a fragmented and bureaucratic health care system.  Many people are trying to do the right things but they have so many systemic challenges to deal with they sometimes come off as less than competent.  In many cases this is a very unfair assessment.  In many instances I have now found myself working with staff to solve problems together.  Sometimes the voice of the patient or a caregiver with first hand experience is the nudge the system needs to make changes.  Through these processes I have gained a lot more respect for health care professionals and the frustrations they have to deal with.

The best advice I can give to people when things aren't going well is to be calm and focus on what is important.  The patient.  If you feel action is not being taken that should be; advocate.  Be respectful and ask questions.  If you need to be pushy, fine, but keeping in mind this is not about you it is about the best interest of the patient.  Work with the staff and not against them.  If you give respect; you will get respect.

Conclusion

I have discussed three principles I try to utilize as a caregiver advocating for my family.  Those being establishing credibility, being honest, and showing respect.  This is by no means an exhaustive list.  There are many more things that others could add but I think it is a start.  It is also worth noting that these principles are required by the patient and caregivers as well as the medical staff responsible for treating the patient.  It is a two-way street.  The bottom line is that you have to work together.  You shouldn't be doing this alone.

Participation Trophies

Much has been made over the weekend about Pittsburgh Steelers Linebacker, James Harrison, confiscating his kids participation trophies.

I have a couple of thoughts on awarding kids just for participating.

My son has had a very difficult first couple of years of his life.  I think the common term is "medically complex."  His medical history has had ripple effects for his development.  He is immature for his age and is overall developmentally behind other kids.  Because of his experiences many of his goals are a little different from other kids.  On the flip side he has skills other children don't have.  How many 7 year olds could act as a guide at Health Sciences Centre?

As a result my wife and I have had to adjust our expectations and how we encourage him.  In some instances, for my son, to participate in an activity, any activity, is a huge achievement.  Going to kindergarten was a huge issue for us.  There were times that we had to be pretty tough on the little guy.  I recall phone calls with the school where I had to talk to the principal and to my son and try to negotiate with them and not let my son take the easy way out on whatever task he was having an issue with.  We do need to hold the bar high and challenge our kids to succeed but we also have to be realistic.  Finding that balance is a big challenge.

My son is a really complex little guy.  I am immensely proud of him, he is one of the toughest individuals I know.  If he hadn't been tough as nails he probably would have not lived to see his first birthday.  He is also smart,  Most kids are a lot smarter than we give them credit for.  The know exactly when they have made a big achievement.  They also know when they have failed to meet expectation.  Trophies or certificates are meaningless.  It's how we as parents and adults react and interact with our kids that matters.

Last year my son was in swimming lessons.  He really enjoyed playing in the pool.  From the time he got in the pool to the time he left he had a huge grin on his face.  However, my son does like to make his own rules and listening to the instructor is not high on his list of priorities.  It was very obvious that one of the things holding him back was his fear of putting his head under water.  My wife and I talked to him about this and explained that learning this skill was important and that he would not learn to swim if he didn't set his fears aside and put his head under.  We tried a lot of things.  We would practise in the bathtub at home trying everything we could to encourage him and to address his fears.  He made a genuine effort but never quite got there.  When swimming lessons were done, we expected that he would not pass his level.  This didn't bother us as we were confident he would get it eventually.  To our surprise, our son actually passed his level.  When I checked the certificate and the evaluation I noticed that for this level he had to "attempt" to put his head under water; which he certainly did.  What surprised me was the reaction from my son.  He was angry when I told him that he had passed.  He knew that he was supposed to get his head under water and he knew he hadn't done it.  He took the certificate and threw it on the ground.  He was mad.

His reaction was partially my fault.  I had told him that he needed to get his head under water and he didn't make it.  Kids are smart they figure this stuff out.  With everything in life you need to have balance.  Not every kid gets to be an astronaut when they grow up.  That doesn't mean they can't achieve success in many other ways.  My son's greatest achievement is that he cheated death on several occasions.  He's had two open heart surgeries and has a heart transplant.  All before he was 5 months old.  He has achieved more in his life than many will achieve in a lifetime.  My son's participation trophy is participation in life.

A Walk Down Memory Lane

I had an interesting experience this morning.  I had a letter I had written, read on CJOB this morning.  In April of 2009 I was interviewed on Charles Adler's show.  This was the first time I had ever been interviewed or spoken publicly about Russell's or Susan's health care journeys.  This started what would become a passion for improving the health care system.  Before I started this blog I had a private blog where I chronicled our hospital experiences.  As I thought about this interview I pulled out my old blog as I was curious what I said about that first interview that took place in 2009.  Here is my only mention of the interview.  I think I've gotten considerably "wordier" over the years.  From this post I think you can tell I had other things on my mind beyond pandering to the media.

A Good Experience

Posted Apr 9, 2009 3:43pm

Well I'm glad that's over!

I wished everyone could have heard the conversation between the commercials. I must say that Chuck was very good to deal with and asked a lot of questions before the interview about what we wanted to discuss and things that were "off limits." I hope everyone got something out of it.

It was especially nice to get a visit from Susan and Russell after the interview. Russell had a Doctor's visit this afternoon and they never got to hear the interview. By the way, Russell is almost 16 lbs now...way to go Russell!

Donald  

Radio personalities can be polarizing.  I certainly don't agree with all of Mr Adler's opinions but there were many things that I think we definitely agree.  Diversity of opinion is a great thing.  It has been interesting crossing paths with media types over the past few years, but this first interview will be one I'll always remember fondly.

Here is the original copy of the email I sent to Charles Adler that I sent yesterday, which was read on the air this morning.  I really liked the way he read it and captured the tone I was trying to convey.

 Good morning,

 

First off, I want to wish you well on your move to the West Coast.  You will be missed from the airwaves in Winnipeg and I, and many others wish you all the best in the future.

 

On your last week here in Winnipeg, I feel we have some unfinished business that we need to resolve.  As you are someone who comes into our homes and offices, almost on a daily basis, I feel it is a worthwhile exercise to have a glimpse of how some of that influence has affected some of your listeners.  I can only share one experience and that is my own.

 

I had the privilege of being interviewed on your show in the spring of 2009.  This was a very tumultuous time for my family.  We had just returned from Edmonton where my infant son had spent 6 months in hospital which resulted in him receiving a heart transplant.  At the time, my wife was also very ill with her own heart illness.  We would be heading back to Edmonton for her own open heart surgery in June of '09.

 

This was the time when the story of Baby Kaylee Vitelli broke.  This was an infant who was diagnosed with Joubert Syndrome, a rare respiratory disease.  The story sparked numerous issues.  The parents in this situation were told by the Hospital for Sick Children in Toronto that their daughter would likely not survive the ordeal.  The story sparked a lot of discussion as the parents in this case wanted to donate their daughter's organs in case she were to die.  They not only wanted to donate the organs but direct to whom the organs would be donated.  This sparked a lot of controversy.  The whole story had a lot of moving pieces and was a media circus.

 

Having just had a child receive a transplant, and hearing about this story on the radio, I sent an email to your show. I was concerned about some parts of the story that did not seem consistent with the experience we had just been through.  Organ donation is an extremely important issue to me and my family and I felt there needed to be a better understanding of the organ donation process.  I still believe that to this day.

 

After sending my email, your producer contacted me and I found myself being interviewed on your program.  There wasn't a lot of time to prepare for this interview.  I still recall talking to you on the phone just prior to the interview and during commercial breaks.  I remember you checking with me to see if everything was "OK".  I was impressed that you were concerned about the direction the interview was going and that "our" story was being treated with respect.  It was a very positive experience.

 

It was on your show that I shared our family's transplant story for the first time in public.  I knew our story was rather unique but I did not realize until after I was on your program that I could positively impact others by sharing our experiences in a public way.  Since that radio interview in 2009, I have shared our story many times and I have become a relentless voice and promoter of patient and family centred care and an advocate for better health care.  My volunteer life has in many ways taken over my professional life.  I am on numerous boards and committees and have been exposed to some of the most brilliant people in health care.  It has been an amazing journey.  I have spoken at medical conferences, been interviewed on several occasions, and written a few op-eds.  I couldn't have ever imagined doing these things a few years ago.

 

Being on your show 7 years ago was not a life changing event but it certainly did start something.  Your show, and the topic you were discussing, prompted me to write an angry email and you were crazy enough to put me on the air.  Two crazy people trying to make a point and attempting to make things a little better in this world.  Your words do impact people, and although we may not agree on everything; you have on many occasions forced me and many of your listeners to think.  That is a great legacy.

 

Thanks for the memories, good luck in the future and God Bless!

 

Donald Lepp

Lockport, MB