Merry Christmas...Maybe...Maybe Not

It's Christmas Eve.

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

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

Hoddinott Road, Birds Hill, Manitoba

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Heart Cath Aftermath - A Matter of Trust

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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