One Week to Go

In one week, on August 1st, we will be flying to Edmonton for Susan's second open heart surgery in 7 years.  The original referral to Edmonton from St Boniface Hospital in Winnipeg was sent in early February.  We've been waiting a long time for this.  Waiting is not easy.

We received the news in early June that a date had been set for August 3rd, for the surgery.  It was nice to finally have a date but it also meant we had essentially two months to "kill" in anticipation of this date.  This has been a process of metaphorically watching the "kettle boil."  Our first reaction to the date in August was profound disappointment.  We were hoping to be done this "whole mess" by now.  When we were discussing plans in March and April we hoped we could have had this all done by the end of June but that wasn't to be.  I think our disappointment was based on the reality that we would likely lose a whole summer to a very persistent cardiac illness.  Susan would likely be house bound up until the surgery date and she would likely spend the balance of the summer recovering from surgery.  It would have been very easy to let this whole summer slip away.

Our "Holiday" Selfie.
On our way to the cabin at Riding Mountain National Park

Fortunately, we have been blessed by many outstanding people who have helped us make this summer a unique (if not enjoyable) experience.  We've been busy.  After school ended at the end of June we have tried to keep the kids busy doing as many activities as we could manage.  We were even able to spend a week at Clear Lake in Riding Mountain National Park last week.  This has become an annual event for our family.  I think I can speak for everyone that we all had a great time.  Russell was even able to pry himself away from "Minecraft" for a few days to enjoy some time at the lake.

Near Miss!
The damage done by a storm on July 20th

So here we are one week away from surgery.  Now our planning for Edmonton becomes a reality.  Unfortunately, we have some unexpected clean up to do before we go.  We had a storm hit our area while we were gone at the lake.  Everything is OK but we do have some damage to our trees and our back shed looks like it's roof may need some attention too.  It could have been a lot worse.

Our basic plan for our stay in Edmonton is in place.  Our flights are booked and accommodations are made.  I'm off work now until September, so things are falling into place.  The one big question mark in this whole process are the things we don't control.  The result of the surgery.  As much as we would like to think we are knowledgeable of this process; we are still very uncertain of the results.  Will this be a solution?  Probably not.

We hope this surgery goes as planned.  10-14 days in Edmonton and then a journey home to recover.  However, there is the possibility that things will not go as planned.  This is not a minor surgery and there are significant risks.  The extent of the surgery has not yet been planned.  There will be some decisions to be made in the operating room.  I'll explain some of the technical details in a future post but my understanding is that we are going to know a lot more on the afternoon of August 3rd, after the surgery is complete.

For now....the countdown is on.  7 days to go!

There are no “Hollywood” endings

A few months ago, I attended (via teleconference) our monthly Family Centred Care Council Meeting at the Stollery.  As is the practise at our meetings we start with a patient story.  We do this for two reasons.  It is a great way to get to know our fellow council members and it is also a very friendly environment for us to practise sharing our stories.  Many of us who have been through some spectacular health care journeys are routinely asked to share our stories in a variety of venues.  Presenting at our council meetings is a great way to practice our delivery for those who are not comfortable with public speaking.

These stories also spark some very interesting and pertinent discussions.  At this particular meeting a Mom shared the story of her son who passed away as an infant.  She chronicled her journey and shared many of her experiences.  These stories are spellbinding.  Something interesting that she shared was that after her son passed away she was referred to a psychologist who worked with her family for nearly a year after the passing of their son.  She shared how this support was essential for her and her family to go through the grieving process. 

As I heard this story and the adjustments this family had to go through I was reminded of our struggles post-hospital.  I often talk about the "continuum of care" that should exist after you leave the hospital.  We left the hospital eternally grateful that Russell’s life had been saved.  When in hospital we were told so many positive things about life post-transplant. Everything would be so wonderful.  Life could go back to normal. 

Nothing could have been further from the truth.

Russell has some unique life experiences

I understand why people were telling us all these positive things about Russell’s new life, with a new heart.  They were trying to keep us upbeat and positive.  Fortunately, some programs were inplacefor us once we finally received the transplant and were sent home.  When we returned home from Edmonton we were immediately referred to Child Development.  We thought this was routine follow-up but it soon became very apparent that we would be requiring additional supports for many issues that we would encounter.  Keep in mind that transplant is the last option for anyone with a heart issue.  Transplant kids receive many invasive; but life-saving therapies.  What we learned when we talked to other families, they were dealing with many of the same issues that we were.  Eating issues, kidney dysfunction, developmental delays…the list went on and on.  Why didn’t someone mention this or were we too distracted by what was going on around us to listen?  Regardless, we were listening now.

I think our real eye-opener occurred when Russell started school.  We have some wonderful people that we deal with at our school and they try really hard.  We have no complaints.  However, it is quite stunning when they openly admit they are not prepared for dealing with kids like Russell.  That is quite a startling admission.  Medically complex kids like Russell are not the norm for the public school system.  Schools have adapted their programs to deal with issues like Autism, ADHD, ADD etc.  No one can tell us specifically why Russell’s developmental issues even exist.  They could be medically related, it could be related to trauma that he has endured, or it could be something unrelated to any of his medical complexities.  It could be his natural state.  No one knows.  We often get comments like “he demonstrates some characteristics of autism….BUT he’s not autistic.”  They equate behaviour he demonstrates to something they are familiar with. 

As parents, this is particularly heart breaking.  We see a little boy who has cheated death on several occasions continue to struggle years later.  We pray that he could just get past all of the difficulties.  If anyone deserves a break; it’s him.  He is very aware that he can’t do some of the things his classmates are doing.  He is his own worst critic.  It is also very frustrating to have meetings, like we do, to discuss Russell’s academic plan.  A meeting with no less than 8 people who are specialists in a variety of educational fields.  All of which are learning with us.  They are great at evaluating Russell and where he stands on a developmental level but a clear plan to close the gap is not readily apparent.  It will be a lot of hard work…for all of us.  What will the end result be?  We have no idea.

The reality of his complex life has become more apparent over the last few weeks as he has started to be more forthcoming about his feelings.  To this point, he has never acknowledged his special circumstances or the fact that he has a transplant.  One of Russell’s challenges is communication.  Over the past couple of weeks he has begun expressing how he feels about his circumstances.  One evening, after a day that included his obligatory blood work I had a chance to discuss this process that he has gone through literally hundreds of times.  I could tell he was a bit upset about it.  I asked him how he felt about going for blood work.  He looked down and very quietly he told me “it sucked.”  I agreed.  It was a tough moment as this was the first time he ever expressed his thoughts on this.  He has never spoken about it before.  This was a bittersweet moment as I was glad he expressed his feelings but it also confirmed our feelings about how difficult these procedures are for him. 

I know many of our friends and family have hoped and prayed for that our life would return to some semblance of “normal” (whatever that means).  As we prepare for our third trip out of province for surgery (for Susan), it seems very apparent that this will likely never happen.

Difficult times have a way of continuing for months and years.  If we aren’t dealing with these issues, we are dealing with the effects of them for a long time after it appears these chapters in our lives are over.  After we were released from hospital with Russell we had a year of “firsts”.  His first birthday, the anniversary of his “crash” in the Winnipeg Children’s ER, the Berlin Heart, and the transplant itself.  Each anniversary had a profound effect on us.  To this day…we have many vivid reminders that will transport us back in time to some of our darkest days in the Stollery ICU.  It will always be this way for us but it is also a reminder of how far we have come.

For someone who is reading this I have just one suggestion.  If you know of someone who is going through a difficult time (whatever that difficulty is).  Remember that there are no “Hollywood” endings.  Momentous life changing events are exactly that; “life changing.”  There is no going back.  If you want to support a friend or family member you have to remember that the effects are ongoing.  It’s a good idea to check in on these people 6 months or a year down the road.  The process of adjustment is a long one, and we need to keep these people in our thoughts and prayers and reach out to them even when things appear to have returned to normal.  Many emotions can be just beneath the surface.

3 Weeks to Go

Things have been fairly quiet at our house.  Our flights are now booked for Susan's trip to Edmonton.  We will be leaving on August 1st.  It is nice to finally be able to get these arrangements made and finalized.  There are a lot of logistics to organize for a trip like this and things are falling into place now.

As we are approaching Susan's surgery date we are slowly checking things off of the "To Do" list.  Flights are booked, accommodations are arranged, and we are getting some of our life's events out of the way.  Each small item that we can complete is one less thing to stress over.  School is now done, which is a huge relief.  We had an "early" birthday party for Russell on Saturday.  We will be in Edmonton for Russell's birth date so we had his party early so he could have a special day when we are all together.  I find it completely amusing how much work this has been to organize all of this over the past few weeks.  When Russell was airlifted to Edmonton in 2008, I had about 6 hours to do all of this, and I did it by myself as Susan was at the hospital.  Still have no idea how that all happened.  I'm pretty sure there were numerous things that didn't get done.

Susan is doing "OK."  At this point in time if we were to have any date change it would be a huge challenge to undo our plans so we hope that we are able to just quietly wait for August to roll around.  The strategy right now is to be as stress-free as possible.  We are still trying to do some normal family things but it is all built around a very "relaxed" schedule.  Managing stress is a huge issue for Susan now.  As is usually the case with any illness you have good days and bad.  We just learn and adapt.  I wish I could describe how she is feeling but i really can't.  She is having more frequent bouts of chest pain and she tires really quickly.  She can still do things but she has to be really careful to take things at a really slow pace.  Anything that requires any exertion has to be planned with a fairly lengthy recovery period.  Load the dishwasher...then sit for an hour to recover.  Lots of fluid to keep well hydrated and keep blood pressure up.  Salty snacks are also a good thing to keep the blood pressure up.

I will be taking time off of work to help out at home.  My last day at work will be this Friday.  Then I can concentrate on getting things ready for our trip.  We are trying very hard to do some normal summer time activities.  In essence, when we learned of our date in August we knew we had lost our entire summer but we are trying to do at least a few things to keep spirits up and moving forward.  One of the most difficult things about waiting is the psychological effect it has.  It really helps to keep the mind busy.

We have a lot to be thankful for.  We have received a lot of support from family and friends.  Our freezer has a lot of goodies in it and we have also had some help with some things around the house.  Every little bit helps.

We hope the next few weeks goes by quickly and without any significant events.  Our hope is that things stays very quiet.  Hoping I have nothing of any significance to report.

The Defeat of Bill C-223 on Organ Donation

The last few weeks have been intriguing in parliament.  Much discussion and hand wringing has occurred over contentious issues such as physician assisted death and changing the words to our national anthem.  Lost in all the commotion was a little publicized private member’s bill, that was tabled by the Member of Parliament for Edmonton Manning, Ziad Aboultaif.  The bill was defeated at second reading on June 15th.

Bill C-223 is a very simple document.  It is only a couple of pages and takes about 10 minute to read.  Quite simply the purpose of the bill is to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada.

parl.gc.ca Bill C-223

The two key issues in this legislation are "coordinate" and "promote."  Most importantly the legislation calls for a national strategy on organ donation.  Canada is losing the battle on organ donation.  Canada's rate of organ donation lags behind many other countries.  A process that is not well understood and is managed very informally in a patchwork of provincial organizations that do not integrate well.

As an example, when Russell was listed for his transplant, our transplant team in Edmonton would routinely get offers of a donor organ that was completely unsuitable.  They would get an offer of a heart that would be coming from an adult.  Not exactly appropriate for an infant that is only a few weeks old.  There are basic inadequacies in the system that make the coordinating of donations unnecessarily difficult.

This legislation is a "no brainer" but of course all of these issues must become politicized.  Again this becomes an issue that if it is not a government priority it is destined to be shelved.  The political rhetoric offered to dismiss legislation such as this is nonsensical.  Kevin Lamoureux, Parliamentary Secretary to the Leader of the Government in the House of Commons, offered this response to Bill C-223.

"However, I would advise the member that there are already things in place to ensure that we are accomplishing what the member is hoping to accomplish with the legislation. Therefore, I will not be able to vote in favour of his private member's bill. " 

Is Mr Lamoureux correct?  According to the Toronto Star he is woefully incorrect.  In an article published only a few days after Bill C-223 was defeated in parliament, the Toronto Star citing Ontario statistics identified that families are increasingly refusing to allow relatives organs to be used for organ donation.  

/www.thestar.com Mourning Families Increasingly Blocking Organ Donations June 16 2016

From the Toronto Star article:

"In 2013, the province’s organ and transplant registrar recorded 14.5 per cent of families (representing 26 registered donors) who refused consent, a number that climbed to 21.1 per cent (62 donors) last year.

Given that one donor can save eight lives, the would-be donors could have meant a lot of good news for 1,524 people in need of an organ transplant on Ontario’s wait list. Experts say the refusals could prove fatal to those left waiting for a donor."

Even when the perspective donor has stated their intention to donate by signing a donor card. Donor families are refusing to consent to the harvesting of organs.  It is clear that organ donation is suffering from significant PR issues. 

One might also assume that the tabling of this legislation is one MP's pet project.  That there is not support amongst the scientific community for such legislation.  That would also be an incorrect assumption.  On June 15th, Dr Lori West a noted transplant researcher (and one of Russell's Doctors) sent a letter to the Federal Health Minister on behalf of the Canadian National Transplant Research Program where she specifically identifies Bill C-223 as step in the right direction.    

http://www.cntrp.ca Letter to the federal minister of health

Potential organ donations are being lost because our system is not functioning as it should.  Unlike the changing of the lyrics of the national anthem, this is a life and death matter and not just political correctness.  This issue matters.  What is our government's response to legislation that may start a conversation on organ donation?  The Liberal government did not allow their members a free vote on this issue but instead "whipped" their vote to ensure the legislation would be defeated.

In a letter dated June 23, 2016 that I received from Mr Aboultiaf, I have been assured by the member that he will not be stopping his efforts to improve and promote the organ donor system in Canada.  I commend Mr Aboutaif for his efforts. For those who wish to support him in this very important issue I suggest you contact your Member of Parliament and voice your support for this kind of legislation and organ donation.

IWK Health Centre Makes Poor Food Choice

Freedom is something we all value.  We all cherish the ability to make choices even if they may not be the best things for us.  This is especially true of food.  Everyone has that guilty pleasure; be it a juicy hamburger or an ice cold slurpee on a hot day.  We all know that these things are not the healthiest of food choices.  We know they are loaded with fat, sugar, or salt...but every once in a while it feels so good to break a rule and have a small indulgence.  They just taste so good there is good reason we call some of these foods a "comfort food."

IWK Health Centre in Nova Scotia is trying to provide healthier menu items for their staff, visitors, and patients by eliminating several food items that they deem unhealthy.  A very commendable and well intentioned idea.  It is likely that all of us could eat a little better and as a health care institution they are trying to set an example.  I just have a few issues with this policy.

IWK Health Centre Stops Selling Pop and Juice - Jun 7/16

2nd from the left.  That is cucumber infused water.  Yum!

IWK Health Centre is , among other things, an acute care pediatric facility.  As such they will be treating some medically complex kids from all over the maritimes.  I feel very sorry for these kids and their parents.  If you show me a child who has a lot of medical history and has had significant interventions, it is not uncommon that you will find a child with an eating disorder of some kind.

In our own case, Russell was tube fed for nearly a year, as an infant.  After we came home from the hospital we made several attempts to get Russell eating orally and we did make some progress.  We were seen at a feeding clinic where we got some tips on how to transition.  In spite of our efforts, and the support we received, Russell was not gaining weight and earned that often feared title of "failure to thrive."  As a parent you feel like a failure.  An inability to feed your own child is a devastating indictment.  We would try anything just to get him to eat.  As we shared some of our experiences with other "hospital" parents we heard similar stories.  This wasn't uncommon.  One mom shared with us how her son's food sensitivity was so severe that he would projectile vomit foods with textures that he objected to.  In desperation, they would peel skins off of grapes and feed them to her son as this is the only way he would eat.  She would spend whole evenings peeling grapes and fighting tears of exasperation as she did what she had to do to get any kind of nutrition into her son.

We felt the same exasperation.  What kind of parents are we that our own son is malnourished.  As we tried desperately to feed our son, our doctors suggested a G-Tube.  A surgery would be booked and Russell would have a tube inserted into his stomach so that we could tube feed him on a long term basis.  This was a huge blow.  Not another surgery!  Not another device to have to deal with for months and possibly years.  We had a surgery date booked and we tried desperately to try to get Russell eating to try to avoid another surgery.  With coaching from the feeding clinic we tried every kind of food (and trick) imaginable.  Yes...some foods that were loaded with sugar.  Anything that Russell might like.  We dropped any pretence that we were going to feed him something healthy we just wanted calories in him.  If we could get him eating junk food, then maybe we could get him eating something else.  Quite literally breakfast cereal saved us.  Specifically, Froot Loops.  The boy loved them.  Don't get me wrong.  These things are pure sugar with chemically infused froot flavour.  These things are horrible...but it allowed us to get milk into him.  Milk which he refused to drink.  Our next issue was Russell's kidneys.  His kidneys have some damage and we need to pour the fluids to him. In addition he is on a Potassium reduced diet also because of his kidleys. Working with our nephrology dietician we introduced him to Peach Juice.  The cheapest & nastiest peach juice on the market. It also contains no Potassium (and not much else). For 7 years Russell has been happily drinking this stuff that

contains nothing but water and sugar and some peach-like flavouring.  This coloured sugary liquid has been keeping Russell's kidneys happily churning away.  Thanks to junk food Russell was able to avoid the G-Tube surgery.  This is not the end of the story.  As time progressed we were able to get healthier food into Russell.  Protein has been a huge challenge but slowly he is starting to embrace meat and that has been a huge success.  However, the progress has been painstakingly slow.  He still has significant eating issues to this day.  He is still very fussy about things with texture or foods that are mixed together.  We suspect this has a lot to do with "control."  Because of his complex medical past he has been forced to ingest medicines and numerous other things that are not exactly pleasant.  Being able to control what goes into his mouth is undoubtedly a huge issue for him.

My concern about what IWK is trying to do is more about their patients and their parents.  Hospital is a terrible place for a child and this is coming from a parent that saw hospitals save his son's life. There are herculean efforts made by child life, social work, and many others to make a hospital stay much more pleasant but the bottom line is that it isn't a lot of fun.  For the patients or the parents.  Is allowing a child the "comfort" of a treat so terrible?  Is allowing Dad the luxury of going to the cafeteria and have a cherry danish (as I have been known to do) something that should be banished.  All the hospital is doing is off loading work onto patients and caregivers.  Parents will bring in food into the hospital that their kids or they themselves prefer.  The hospital just made this less accessible.  Keep in mind this is coming from someone who has smuggled salt packets into my wife's hospital room as they (the hospital) consistently put her on a low sodium diet in spite of the fact that sodium is helpful to her as it relates to her heart condition.  People just don't use any common sense.

I understand what IWK is trying to do.  It is a noble effort.  Yes, we all should eat better.  We get it.  However, this tactic, as well intentioned as it is; is misguided.  This can only serve to further add to the guilt many parents feel about how their children eat.  Children with significant food aversions and eating disorders.  IWK should be coaching parents and helping them and not shaming them because their children do not drink cucumber infused water.

I could imagine what a parent might say to their child if they were in palliative care.  If they wanted a can of Coke....they would get a can of Coke.  Hospitals should be about patients and providing care for them not making what feels more like a political statement.  It seems ironic to me that you would deny a child a glass of ginger ale but then give them a cytotoxic medication that suppresses their immune system.  Doesn't that seem a bit odd?

OK....now who is up for a Fat Boy and a Milkshake?

We Have a Date

What started out as an idle conversation in early December has now come to fruition.  Susan has been booked for open heart surgery in Edmonton at the Mazankowski Heart Institute.  Her big day is August 3rd.

For some background on her condition and what her surgery will entail, feel free to follow the link provided here:

What is Hypertrophic Obstructive Cardiomyopathy

As I have shared with several people this is both good and bad news.  Good in the sense that some action is taking place and our team seems to think it will help Susan out.  Bad news is that this is effectively still two months away.  That is a long time.

I am sure there will be considerable whining in the next few blog posts...so I will leave that for another time.

I found this the other day.  A Biblical reference for cardiac patients on wait lists...who knew?

I would have lost heart, unless I had believed that  I would see the goodness of the Lord in the land of the living; Be of good courage, and He shall strengthen your heart: Wait, I say, on the Lord

 - Psalm 27: 13,14 NKJV

My Life is a Reality TV Show

It was another fun-filled week of adventures this week.  My last post gave a brief rundown on what a typical week is like for us.  It's busy, but many people are busy.  Everyone is busy nowadays.  Our normal routine is just a little different than most in that our lives are just a little preoccupied on all matters health related.

We have a lot going on right now.  Susan is pretty much stuck at home waiting for surgery and Susan's Mom has just had major abdominal surgery and was just released from hospital this week.  We have a very full plate.

If that wasn't enough, we had a little medical detour this week.

At 5:00 AM on Wednesday, Russell woke us up as he was in significant pain.  The abdominal pain that he had encountered a week earlier was back.  He was in a lot of pain and was clutching his gut.  Tylenol and a little bit of time solved the problem the week before.  We gave him some Tylenol and tried to get him back to bed to rest.  Given that the pain had returned we figured a call to the pediatrician was in order.  Later in the morning, we were able to reach our pediatrician by phone and Susan had a quick discussion.  Because of the pain in the abdomen Russell's breathing was very shallow.  Recommendation from the Dr was to see if the Tylenol and a little rest would help.  If after a couple of hours the pain was still persisting....it would be a good idea to head to the ER and at least get a chest x-ray.

Late in the morning we decided to head to the ER.  I met Susan and Russell at Children's ER at about 12:30.  On the way, we ran into two of our cardiologists, and we also said a brief hello to the ER Patient Care Manager.  Yes, we are on a first name basis.  As we never wait in the waiting room, we quickly made our way to Treatment Room 11, and got ourselves settled.  With cell phones in hand, we notified our nurse clinician and our transplant cardiologist that we had arrived at the ER and gave them a brief rundown on the situation.  We had a response from both of them within 15 mins.  So, with our backup in place, we proceeded to concentrate on making Russell comfortable.  He wasn't in bad shape but he was still in discomfort.  He was mostly agitated about where he was.  He knows the ER far to well.  We had a quick visit from our nurse...did a blood pressure...she got us a pillow and she was gone.

I must apologize and maybe i'm a health care snob but I'm not a big fan of working with the "B" team.  Our next visitor was a pleasant young man who identified himself as a med student.  Yay, we get to educate Skippy on transplant cardiology.  I suspect that attending physicians send med students or inexperienced residents to see people like this us as a hazing ritual disguised as a "learning experience."  Skippy obviously came into our room a little unprepared and obviously hadn't read Russell's chart.  Keep in mind that when we present at Triage, the first thing was say is "This is Russell Lepp and he is 7 years post cardiac transplant."  On this day...this was written by the triage nurse at the top of the chart...IN BIG BOLD LETTERS.  Unfortunately, for Skippy he didn't get the memo.  He proceeded to ask us all the typical questions.  It was becoming obvious to Susan and I that from the questions he had no idea about the patient's history.  We just looked at each other with the collective eye roll.  This went on for about 10 mins and then he asked about his medical history.  "Had he had surgery?"  This is when we started to laugh.  I know it probably isn't the most constructive response but it is the kind of thing that happens to us fairly often.

Once we got Skippy organized, we got the process started again.  As Russell was a bit congested, and because of the shallow breathing we were sent for a chest X-ray.  Skippy was very helpful and showed us the way.  We had to explain that we have been there a few times and knew the way.  In fact Russell, could conduct tours of Health Sciences Centre.

Chest X-ray was done quickly and we headed back to Treatment Room 11.  A few minutes later our attending physician rolled in with his initial assessment and who had had a peek at the chest x-ray.  The chest x-ray indicated no pneumonia and likely just a bit of a cold.  No surprise.  He told us that he would have the radiologist have a look at the x-ray to get their opinion.  He was concerned that this issue had re-occurred and it seemed like our trip to the ER would end with no resolution...our Dr indicated that he wanted to pursue the matter and not let it go.  Russell was still a bit sore but it was obvious that he was steadily getting a bit better.  The ER Doc wanted to run blood work.  We suggested that we could run his order when we went for our regular blood work which was due.  Russell's regular blood work has to be run at 8:00 am.  We got an order set from the ER Dr and we agreed we were going to come back in the morning and run the blood work.  We needed to ensure that the results of the blood tests would go to both Doctors, so we had a little bit of coordinating there.  This was solved by a quick text message from our ER Doc to our transplant Doc.  We left the ER at 2:30.  We were there a grand total of 2 hours.  Probably one of our quickest trips to the ER.

Later in the afternoon, we received an email from our transplant cardiologist stating that she had talked to the ER Doc, and that she had been briefed on the entire ER visit.  She stated that if the blood work showed nothing unusual, that she would order an ultrasound for Russell, to be done as an outpatient test.  Even though we had left the ER, care was still happening.

I share this experience because I wanted to have people understand how much coordination has to happen even for the simplest of things.  The reason this episode was well orchestrated was because we were dealing with three cooperative Docs.  Our Pediatrician, ER Doc, and our Cardiologist.  Many times you hear about silos in health care.  That the right hand doesn't know what the left hand is doing.  This is all true.  What made this trip more coordinated.  The consistent player in this short trip to he ER, was us as the parents.  We were able to transfer info from one silo to the next.  Our pediatrician gave us info and some questions to ask when we arrived at the ER.  We eliminated having to poke Russell twice by waiting until the following morning when we could run Russell's standard tests.  When we conveyed to the ER Doc that our cardiologist was aware of what was going on and that we were in Emerg, that changes our conversation.  He knew that he was not obliged to treat anything, he knew that he could hand us off to cardiology where they could spend more time and do a proper investigation.  During this whole process we were keeping all parties informed as to what was going on and in turn we had a much better experience because we knew what was going on at all times.  We were never left guessing.

Many times the coordination that I refer to above happens without the family being aware.  The family is left guessing and making assumptions.  That is not a good feeling.  Many times we, as families, are assuming this coordination is going on and many times it is not.  The silos don't communicate well and messages routinely get missed.  We have seen this more times than I want to remember.  It is not only the job of health care professionals to engage patients and families like this but it is also incumbent on the families to interject and ask questions.  The problem is the vast majority of the population has no idea how to do this.  After 8 years we are still learning.  This is a constant challenge.  Patients/caregivers need to be educated; and they need to be involved.  It is the only way I see anything improving in health care.  The problem is that there is very little training and supports for families to become effective advocates.  Most of the learning is done at a bedside and mostly by trial and error.

A Note about Skippy:

I refer to our med student in this story by the name of "Skippy" and I'm not very nice to him.  HSC is a learning hospital and med students are all over the hospital.  I hope that this young med student becomes an excellent physician someday.  To get where he is today I have no doubt he is a smart guy, probably a lot smarter than me.  In our years of experience and having gotten to know many Doctors at a more personal level.  I am struck at how human they are.  We (general public) get some strange ideas of what Doctors should be.  Some kind of caped super hero.  We have to realize that at one point they were all struggling med students just like this young man we encountered.  I hope we weren't too rude in our encounter but in reality all Doctors will deal with some challenging families.  I hope some lessons were learned on Wednesday and if I was a little obnoxious or a little overly sarcastic...my apologies.