Slow Down

Posted on March 15, 2019 by Matt

Alex has been on blood thinners since before he could walk, so in the back of my mind I’ve always worried about him falling and hitting his head, or getting cut, or hitting his nose and making it bleed.  Whether Alex is running, riding on his scooter, on his bike, even running in the house with the puppy, he probably hears “slow down” more than most kids his age.

There’s more to it than just the blood thinners though.  I worry about him elevating his heart rate.  When Alex was five, he had an incident at school where he experienced sudden tachycardia in gym class.  His heart rate elevated very quickly; the school called an ambulance and the situation was managed at our local emergency department in consultation with SickKids.  We were home later the same night.  Alex has been on a low level beta blocker ever since to keep his rate controlled, but it was a very scary experience for everyone involved.

Looking back, I don’t remember a doctor ever confirming that it was Alex’s activity level in gym class that sent him into his episode of tachycardia.  I’m pretty sure I drew that conclusion on my own, and it’s been with me ever since.   I’m not sure anyone could know for certain anyway; rhythm and rate complications are not uncommon with his condition, and his heart has been through quite a lot over his nine years.  It’s definitely made me nervous, and has affected my perception of Alexander’s level of physical activity.  I’ve always been worried about him overexerting himself.  This is a strange conflict, because I love watching Alex play.  He plays softball and basketball, and generally wants to do everything his big sister does.  I remember asking his cardiologist very early on if Alex would be able to play sports, or even play at recess.  The opportunity for him to be physically active was clearly a priority for me right from the start, and even though we’ve been blessed with these opportunities that I wanted so badly for him, in the moment I find my feelings are pretty equally split between gratitude and anxiety.

So you can imagine my state of mind when Alexander told us he’d signed up to run cross-country at school this fall.  The distance was 1km for his grade, and he was determined to accomplish it.  The day came, and Michelle and I were both able to be there to watch him with Sydney, who also ran with her grade.  I was pretty nervous.  A few minutes after the race started, the first of the kids came out of the forest and around the final corner into the long straightaway across the field to the finish line.  After the majority of the kids in the middle of the pack crossed the line a couple of minutes after that, there was a bit of a break, and then the kids near the back started to reach that final turn.  I saw Alex, in his Jurassic Park t-shirt jog into the straightaway.  I was so relieved.  What happened next was remarkable.  I had thought he would have to walk for the last straightaway, or that I might even have to help him across the line.  Instead, when he saw the crowd at the finish, he did what runners are supposed to do, and he dug deep for the final push.  He broke into a sprint and even passed a few kids before he crossed the line.  I was so proud of him, but it took everything he had.  Michelle made it to him, and helped him calm down so he could catch his breath.  He recovered pretty quickly, and was very proud of his accomplishment.

Michelle loves running, and she’s really good at it.  I join her on maybe three 5k races a year, and it’s everything I’ve got to get across that line in half an hour.  So while I’m not exactly competitive, I do understand the feeling when the finish line comes into view after that last turn.  There comes a time in every race where I have to decide whether to jog across, or sprint to the finish.  I dig deep for the sprint about half the time.  It’s a very simple, binary decision, and every single time I decide not to sprint, it’s because my mind says “don’t”, not because my body says “can’t”.

I’m not sure what Alexander’s body was telling him at the end of that race, but I know it was his determination that allowed him to sprint for the finish line.  He believed he could do it, and he was right all along.  Alex has always been a bit stubborn.  Michelle and I know this has helped him through some difficult times.  Whether it’s that first walk down the hallway to the playroom after surgery, or just heading down to SickKids for another full day of tests.  Once he sets his mind to something, it’s difficult to turn him away from it.

It might be this determination that I admire most about him.  Most recently, Alex decided he wanted to try CrossFit.  We got the OK from SickKids (with some restrictions), and he’s going once a week to our local gym, who have been amazing with adjusting workouts around his restrictions, and helping him scale movements to give him the best chance for success.

I still worry about Alex when he exerts himself, but I’m going to continue to let him try.  I’ve come to believe that if we place too much focus on what we fear our heart kids “can’t” do, we risk stifling that determination that many of us have identified in their personalities.  I don’t want my child to grow up in fear of things that are difficult to succeed at.  I want him to try anyway.  I want him to try with everything he has and I want him to sprint for the finish, not slow down.

Posted in Congenital Heart Disease, Father and son, Health, Heart, Heart Dad, Right Atrial Isomerism | Tagged , , , , | Leave a comment

The Monitor

Posted on May 22, 2018 by Matt

For a few months after Alexander’s first open heart surgery I had trouble sleeping after we got home.  This was different from the exhaustion all parents go through while in the hospital.  It wasn’t directly caused by the fear and uncertainty of a complicated recovery, it was something different, and something I’ve not really discussed openly before.

I could hear beeping.

It wasn’t all the time, but in the moments between awake and asleep, just as I was losing consciousness, it would come.  It took me a while to sort out what I was hearing, since there’s nothing in our home that makes that sound.  It was a faint, low, rhythmic beeping, familiar and urgent.  It sounded distant though, like it was coming from another room.  It would snap me awake – and then it would go away.  Typically, I’d get out of bed, go check on Alexander, and then come back and try to get to sleep.  Sometimes I’d just go downstairs and put the TV on and doze on the couch.

When Alex is in the hospital, the bedside monitor is my nemesis.  I’ve stared at it for hours.  If you’ve ever spent any time in the hospital, or watched one of those TV medical dramas, then you know the machine I’m talking about.  If you’ve been fortunate enough to avoid either, I’ll do my best to describe it for you.  Beside each patient is a bedside monitor.  It’s like a little computer screen that’s connected to the patient by a series of wires and probes, and the screen displays an impressive range of information about the patient.  Heart rate, heart rhythm, blood pressure, blood oxygenation, respiratory rate, and some other numbers and waves that I don’t understand.

Through several different conversations with nurses at SickKids, I’ve been able to piece together how the monitor communicates with the medical staff.  Specific to each patient, an expected range is input into the machine for each attribute being monitored.  If the patient hits the high or the low range limit, the machine pages the nurse to come take a look.  Each patient’s monitor even has a remote visual display down the hall at the nurses’ station as well.  Sometimes there’s something wrong, and the nurse jumps into action, adjusting oxygen levels for example.  Often there’s nothing wrong, and the nurse re-positions the patient in their bed, re-applies a wire that’s come loose, or puts a dislodged oxygen monitor back on a toe or finger.

The bedside monitor is more “vocal” in the patient’s room.  If the high or low range limit is reached, a warning alarm is initiated by the machine.  It’s a series of low, rhythmic beeps, possibly in repeating sets of three, I can’t remember.  When the nurse arrives, they usually take a look at the machine, take a closer look at the patient, turn off the alarm on the monitor, and take whatever action is necessary.  Alexander’s recovery from his Glenn/Coles surgery was marked by “persistent desaturations”.  This means that he had a very difficult time maintaining a suitable amount of oxygen in his blood.  Normal blood oxygen is around 100 on the monitor for a healthy person.  On our worst day, Alex was down in the 50’s.  Usually he was between 65-75 (with an oxygen hood or nasal prongs), but the truth is he was all over the place.  Just for comparison, he was mid 90’s at his last cardiology appointment, which is great for him.  Anyway, for a period of several days, sometimes multiple times per hour, Alex would fall below the range limit on the monitor and the alarm would sound.  I became so focussed on his machine that I started to recognize the range limits that would trigger the alarm.  If the low limit was set to 70 I would sit with my head in my hands staring at a reading of 71 just waiting for it to drop to 70 and set off the alarm.  It was pretty high anxiety.  The closest feeling I can compare it to is walking through a dark room knowing someone is going to jump out at you, but not knowing when.  It went on like this for a long time.  When Alex started to improve, the nurses actually began silencing the alarm and turning the monitor display off in the room.  It had become that obvious to them that I was having a hard time.  They could watch Alex’s vitals from the nursing station, and of course if anything went wrong, the monitor would still quietly page them.

To this day, that little screen immediately becomes my focus whenever Alex spends time in the hospital.  Alex had a bout of tachycardia after his last operation, and I watched his heart rate spike from 90 to over 200 in about 10 seconds in real time on the bedside monitor.  After that, I substituted my fear of the low blood oxygenation limit alarm with a new fear of the high heart rate limit alarm.  Once again, in the days that followed the machine was turned towards the door, and the in-room alarms were silenced.

I feel ashamed writing about this; I’m afraid it sounds foolish.  I’m also still afraid of the monitor.  I don’t hear it in my sleep any more, but in those tense moments, the fear is very real.  I’ve learned to cope with it, and not let it consume me on those rare occasions he’s hooked up.  After all, the monitor is a critical ally in his recovery.  I just hate that damn alarm.

Recently, I had the privilege of helping facilitate a discussion with a group of other heart dads.  One of the topics that came up was how we deal with anxiety, during and after these difficult times.  One father spoke about a fear of his mobile phone.  He was called at work one time because of a serious emergency with his heart baby, and now whenever his phone rings during the day, he’s immediately thrown back into that moment.  I can relate to that one as well.  I think it was very beneficial for most of us to be able to talk about it with other dads who have been there.  Anxiety can be a difficult thing to come to terms with.  Some people get angry, some suffer in silence.  One or two try to work it out in a blog.  I think most push it down as far as they can and try not think about it.  I’m not sure there’s a right answer, but I think it’s important to at least acknowledge it, and to acknowledge that many parents leave the hospital with scars too.

 

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If not now…

Posted on September 18, 2017 by Matt

Alexander’s most recent cardiology clinic gave us a scare.  The truth is, given the complexity of Alex’s condition, we have been blessed with great clinic results, and we’ve become accustomed to the type of clinic visit that feel more like keeping in touch with the cardiology team than anything else.  We get there early, run around for his various tests, meet with his clinic nurse, and then have a short discussion with his cardiologist.  It usually ends with a “thumbs up” from Dr. D, and those ever encouraging words “see you in a year”.

This time was a little different.  During the meeting with his cardiologist she revealed that the Echocardiogram indicated a loss of heart function since his last clinic.  Nothing to panic about yet, it appeared to be a small reduction, but we would need an MRI to quantify it, and depending on what the MRI showed us, we would have to discuss our treatment options in a few months.

One of the strange things about all of this is that when Michelle and I found out about the reduction in heart function we were scared, but neither of us was shocked.  Not because he’s had symptoms, he hasn’t.  Alex continues to thrive and has shown no side-effects at all.  I think the reason we both felt disappointment (but not surprise) is that an eventual loss of heart function was part of Alex’s initial long term prognosis; this isn’t a deviation from the plan.  We’ve always known that his condition is progressive, but it was still very hard to hear that we may now be facing the next stage of his journey.

It was a long couple of months waiting for the MRI.  When the day came, Alexander was ready, and he did great once again.  A couple tense weeks went by, and then the phone call came from Sick Kids.  It was Alex’s cardiologist calling to let us know to what level his heart function had degraded.

“The MRI results show slightly reduced function when compared to a normal heart, but the numbers are almost identical to his MRI from three years ago.  There is no indication of any degradation.  The echo must have looked worse than it was; this is why we do the MRI’s!”  I asked her to repeat herself at least twice.  “No degradation, no indication we’re at the start of a downward progression.  We’ll schedule another MRI for 6-9 months out just to be sure, but it’s good news as far as I’m concerned.”  Wow.

Of course, we were extremely relieved.  After a few days sorting out our thoughts, Michelle and I sat down to discuss the summer; plans had been on hold pending the test results.  Usually we try to book a few days away somewhere close, like Niagara Falls or Huntsville.  Far enough that it feels like a mini-vacation, but close enough that if we needed medical care for Alexander for some reason, we could get there quickly.  Last summer, we actually made it all the way to Grande Prairie Alberta to see the kids’ Aunt and Uncle.  Feeling adventurous based on our recent good news, we began to discuss a few locations we had previously only discussed hypothetically in that “maybe someday” kind of way.  “How about the east cost?  I’ve always wanted to see PEI.  What about London, Paris, or Edinburgh?” we half joked.   “What about Hawaii?”

The fact that we didn’t immediately laugh it off was a big step for us.  Michelle and I used to love to travel, and it’s been a long time since we’ve gone somewhere far.  We took Sydney to Scotland when she was only two, and it was amazing.  We saw some incredible sights, and met a wonderful friend on a day tour who was also on vacation, and whom we’ve kept in touch with ever since.  We actually hadn’t been on a “beach” vacation since our honeymoon.  We love our family trips to Florida, we’re so grateful to have the opportunity to go, and we have an amazing time – but it feels different than flying somewhere far away, and over the ocean.  We began to do some research, in particular relating to the quality of health care available should we need it.  The discussion about travel has come up a few times with Alexander’s team at Sick Kids.  They’ve always been very encouraging, but the message has been quite clear.  “It’s highly unlikely anything will go wrong, but if it does, you want access to 1st world healthcare.”  It’s for this reason that we’ve put off the idea of a family trip to the Caribbean, somewhere Michelle and I have enjoyed in the past.  Our research was encouraging.  While much of Hawaii is quite remote, Honolulu is a large modern city, and it even has a children’s hospital with a cardiac centre!  We decided that if we were going, we’d restrict our destinations to the island of Oahu.  Within a few weeks the trip was booked, and after a long flight we spent nearly two amazing weeks on Waikiki Beach, and on the North Shore of Oahu.  No health scares, just pure enjoyment and relaxation.  The kids ran along the beach, snorkeled, took a submarine ride, went to two Luaus, and came home with fantastic tans.  Alexander even volunteered to participate in a Hawaiian “dance-off” on stage, because “I may never get another chance.”  We saw the Waimea Valley, lounged by the pool, ate amazing local seafood, and even managed to reconnect with the friend we last saw on a tour bus leaving Inverness in Scotland almost ten years ago (did I mention she was from Honolulu?).  It was an unforgettable trip.

This is a happy story, but there’s also a lesson here.   Something occurred to me while I was watching the kids play on the beach.  It’s the kind of realization made possible by the absence of distraction, the presence of peace of mind, and perhaps a Mai Tai or two.  I realized that this was not a situation where Alex was sick, and became well enough to travel.  The MRI results had not shown an improvement, they’d shown that he was the same.  Nothing about his health had changed; only our perspective.  So why then, were we brave enough to take this trip after hearing the results, but not before?  It’s an interesting question, and one that I’m still struggling to answer.  I think that deep down, there is the unspoken realization that one day the call will come from Sick Kids, and it won’t be the same call we received back in June.  It will be to let us know there is a reduction in heart function, and we need to discuss our options.  There is still some urgency to make sure we don’t take our time for granted.  It would be so easy to look at the period of time after our last clinic and be angry that we worried needlessly about the possibility of bad news, but the truth is I find myself very grateful for the reminder.  If it had just been another typical clinic for Alex, I know we wouldn’t have gone on our trip, even though Alex’s health would have been exactly the same.

This is not just a lesson for heart parents, it’s for everyone.  I realize that for a multitude of reasons, it’s simply impossible for everyone to just up and leave for Hawaii, but I also know that everyone has been putting something off as well.  Maybe it’s that road trip to Florida, maybe it’s a camping trip, or a fishing weekend, or a staycation in Toronto.  Maybe it’s a baseball game, a day at the aquarium, or a board game you’ve been meaning to play as a family but just haven’t got around to it yet.  Maybe it’s half an hour shooting hoops with your kid on the driveway.  My advice?  Go do it.  Today, if possible.  They tell us at Sick Kids that the reason they do what they do is to provide every kid with the opportunity to live a life that is as happy and “normal” as possible, for as much time as they can give us.  Many of you won’t have had the same experiences as us, but the reality is that a long and happy life is all any of us really want for our kids; heart-healthy or not.

Seize the moment, for loved ones may never be in better health than they are today.  Go enjoy life.  If not now, when?

 

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Stay Strong, Mom

Posted on March 9, 2016 by Matt

One of the many things we’re grateful for over the last six years has been the opportunity to meet some incredible people.  I’ve come to understand now naive I was before Alexander was born to the challenges that so many children and their families face, and the amazing people that help them get through these challenges.  We all have fond memories of specific people we’ve encountered along this journey, and I consider myself blessed to be able to count several.  I’d like to share the story of one person in particular.

In the weeks leading up to Alexander’s first operation, we began to face some difficult questions.  We had been told right from the start that the first surgery would likely be the most complicated, and posed the greatest risk.  The Coles vein repair adds another level of complexity to the Glenn that can lead to complications during recovery.

“You need to understand, this is a big operation, and Isomerism almost always throws curveballs,” was what our surgeon told us.

Now, having never been through this before, I defaulted to the worst possible outcome in my mind.  We had one last meeting with our cardiologist before the operation, and I asked the blunt question…

“Is Alexander going to make it through this?”  I asked him.  He gave us his estimate of Alexander’s chances.  It was more optimistic than I was expecting, and led to a very interesting conversation.  Our cardiologist began by telling us how hesitant he is to provide numbers.

“If I were to tell you Alex has a 99% chance of 30-day survival, you would be thrilled.  The trouble is, the other 99 don’t matter, if you’re the one.” he said.  “The simple fact is, I can’t predict with absolute certainty if any of us will be here a year from now.  I know why you asked me, but so much can happen.  It’s impossible to predict the future.  If you want my best guess, I think you’ll be home with your son in three weeks,” he concluded.  That was good enough for me.

Our cardiologist was an amazing man.  He’s since moved on to pursue opportunities south of the border, and he’s actually not the person I decided to tell you about today.  The person I want to talk about was a nurse on the cardiology ward at SickKids.

We need to take a step back to Alexander’s Glenn / Coles again, which was performed on November 11th, 2009, not long after the discussion with our cardiologist I just recalled.  I would have told you at the time that Alex had a very difficult recovery.  His discharge summary states that Alexander had “a complicated recovery course with persistent desaturations.”  In getting to know other heart-parents, I’ve since learned what a difficult recovery can actually look like, but I won’t take anything away from how we felt at the time; we were terrified.  Alexander was in the CCU for 11 days.  He was extubated multiple times, had a lung infection, and desaturations that at times dipped into the 40%’s and led to an unexpected catheterization.  We were on H1N1 watch, had symptoms mimicking Morphine withdrawal, and of course, our old friend Chylothorax.  It was a very difficult time.  Looking back, they did warn us that the recovery would be a series of “two steps forward, one step back” but they never mentioned it would be so hard to see the steps forward!

Things didn’t get easier after our transfer up to 4D.  This is when Alexander’s pain symptoms were at their peak, though it actually ended up being intolerance to Domperidone, not Morphine withdrawal that was causing problems.  His response to the pain was also in part responsible for his saturation issues, as he was bearing down and crying so much.  On about day four up on 4D, in the middle of the night, things came to a head for Mom and Dad.  Michelle and I typically balance each other out, we’re a good team.  When I’m having my tough moments, she’s there to bring me out of it, and I’m usually able to do the same for her.  Not on that night.  We were both in a pretty sorry state.  Alex had been crying for hours, they were switching back and forth between the prongs and the hood for oxygen, we were exhausted, Alex was in pain, and nobody knew why.  They’d even mentioned a return to the CCU if things didn’t improve.

At the centre of our epic meltdown was a talented and beautiful young cardiac nurse.  She worked with Alexander through most of the night.  In the wee small hours, once Alex had finally fallen asleep, and I stopped pacing the room and sat down, Michelle started to cry.  The nurse gave her a second, and then went from taking care of Alex, to taking care of us.  She took Michelle’s hand, looked at her, and gently, but directly, said three simple words…

“Stay strong, Mom.”

It’s amazing to me that three words said at just the right moment can have such an impact.  I remember it so clearly.  I can see her face as she said them; I can see Michelle’s composure return, and with it, my calm.  It was like she was reminding us she needed our help too; she couldn’t do it on her own.

“Stay strong, Mom.”

With those words, we knew that it wasn’t over, but we were going to get through it.  She’d seen this sort of thing before, and understood we just needed to get through one more day, and then the day after that, and the day after, and so on.  If we could stay strong for him, everything would be OK.

I’m not sure that’s what she actually meant, but sometimes the interpretation is more important.  We found the strength she asked for.  It was remarkable to see such composure in someone so young; under circumstances most people her age couldn’t imagine.

Alexander began to show improvement the next day.  The Domperidone was stopped, his saturations stabilized, and things got better for us from then on.

Alexander was discharged from SickKids three weeks to the day from when his Glenn/Coles was performed.  Our cardiologist’s “best guess” was pretty accurate after all, though we’d have never thought we’d be home in three weeks after the way the first two went.  Two steps forward, one step back.

Alexander only had that special nurse once.  Whether by luck, fate, or design, she came into our lives just when we needed her.  The next time we saw her was at our follow up clinic a week later.  We stopped in the SickKids atrium to get a coffee, and she waved at us as she was heading upstairs.

“It’s so amazing to see how well he did after all that!” she said.  “Can I ask you something strange?  Is it OK if I give Alex a kiss?”

Alexander had touched her life that long night too, and of course we agreed.   She gave our little boy a soft kiss on the forehead, smiled, turned, and was gone.

“Stay strong, Mom.”

It became a mantra for us.  Alex has had two major surgeries since, and many times those words have echoed in my head.  I’ve repeated them to Michelle; I’ve sent them to old friends with sick children.  I’ve said them to new acquaintances in our group of heart-parents, and I doubt anyone understands what they mean to us.  In the absence of our experience, the significance likely gets lost.

Our cardiologist was right about another thing.  None of us knows where we’ll be a year from now.  So much can happen.  It’s impossible to predict the future.

The name of our nurse was Natasha Cardoz.

Natasha was killed in a car accident in the summer of 2011.  We found out when we inquired about her during Alex’s Fontan recovery.  The nurse we asked broke down immediately, they were very close.

It doesn’t make sense, much like many things we’ve seen since we became heart parents.  She was intelligent, young, vibrant, and had chosen a career helping God’s most precious creatures, and yet, in the face of astronomical odds, she was the one.

Natasha remains now a treasured memory and a face from our past; one of the many faces I see when I watch Alexander laugh, run and play.  Even though it was only for one night, his story would not be the same without her.

You will meet incredible people on this journey.  It’s not an easy path, but during our most difficult times, we’ve found our lives intersecting with people, and it’s felt like they were put there just for us.  Let their light illuminate your dark times, and always remember…

“Stay strong, Mom.”

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Posted in CHD, Congenital Heart Disease, Heart, Heart Baby, Heart Dad, Right Atrial Isomerism, Uncategorized | Tagged , , , , , , , | Leave a comment

My child

Posted on January 3, 2016 by Matt

In the midst of all the worries and fears we carry as heart parents, one of the things I’ve found most challenging is watching my child grow up much faster than I had intended.  I do believe that the experiences they’ve been through will make them a more caring and understanding adult, but it’s been difficult at times to watch them cope with these adversities, in many cases absent of understanding.  It’s been very difficult to reveal the scope of certain moments along this journey to them, and frequently I’ve found myself balancing what they deserve to know about the dangers of a surgery or procedure against what I feel they can handle emotionally.

My child has seen a lot, more than our friends and family may realize.  The cardiac ward can be a scary place for a little person with a lot of questions.  So can the oncology department, where we go for our thrombosis follow ups.   My child knows the fear of rushing with Mom and Dad to the emergency room.  They know what a “code blue” is.  They know what it means to look into my eyes and understand that something is very wrong.

My child knows that sometimes, tragically and unfairly, children die.

These experiences have taken their toll over time.  My child is very health-conscious, is scared of needles, and absolutely terrified of bloodwork.  My child has required counseling from experts at Sick Kids to explain upcoming surgeries, and what it will be like the first time they look down and see chest tubes, NG tubes, pacing wires, bandages, oxygen masks, IV’s, and scars.  They know that during the recovery there will be a lot of pain.  Even at home, my child knows how to recognize difficulty breathing, cyanosis, and coughing.  When playing they have to remember to take breaks when all their sibling wants to do is keep running.

My child knows, and has known for a while, that parents don’t have all the answers.  It’s a hard lesson to learn at a very young age, and during frightening times when at the very least, the infallibility of Mom and Dad should provide the reassurance needed to make it through.  Too many times, my answer to the tough questions has been “I don’t know.”

My child knows what it means to be brave for Mom and Dad, usually without asking.  Even during the long nights before major surgeries, at the most difficult times in their life, my child tells me everything will be OK.

I think every Dad wants to be his child’s hero, and partly despite our situation, but mostly because of it, I think I’ve managed to pull it off.  I’m very grateful too, because I’m one of the few lucky Dads who can also say the same of his child.

My child is my hero.  Her name is Sydney, and her little brother was born with complex congenital heart disease.

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The Miracle

Posted on December 15, 2015 by Matt

Christmas is fast approaching, and our family prepares for another magical holiday surrounded by loved ones.  I love Christmas.  It is by far my favourite time of year.  As it is with most parents, watching my kids on Christmas morning brings back so many memories of my own childhood, and in many ways it’s like getting a chance to experience it all over again.

Being a heart-Dad has certainly amplified my Christmas experience over the last several years, mostly for the better.  The new perspective makes me very thankful for our many blessings, and a stronger faith makes this time of year very peaceful, even amidst the holiday chaos we all deal with.

Two of Alexander’s major surgeries happened in the fall, and he was released from hospital in the weeks leading up to Christmas.  I remember feeling so relieved.  Being home with Sydney, our family whole again, and with the holidays approaching were some of the happiest times in my life.  To be blessed with a son we weren’t sure would see his first Christmas, now making a Santa list for Christmas number seven is surely a miracle, after all.

There is, however, another side to being a heart-Dad at Christmas.  It’s a perspective gained from being part of a community of heart parents, and getting to know the families of the little angels who saw too few Christmases.  It’s a stocking left out Christmas Eve in memory, but which remains unfilled Christmas morning.  It’s a small family gathered around a tiny tree, fully decorated and standing proud over a memorial plaque.  In those moments of reflection, it’s not even about the fear of what could happen, it’s only the gravity of their loss that’s so overwhelming.  I don’t know if those families realize how much we think of them.  I should probably tell them more.

I still love Christmas, more now than ever.  Our family will once again gather and share in the magic of the season.  We’ll eat too much, we’ll laugh, we’ll play, and we’ll take for granted all the things we probably shouldn’t.

There will be a moment though, during the silent night between when the kids go to sleep, and Santa’s annual visit, that will be reserved for the angels gone too soon, and their families, for whom Christmas will never quite be the same.  We’ll light a candle, and be thankful for the miracle that was their lives, and for how our lives are forever changed because of them.

 

“Daddy, what’s a miracle?” you asked me in a dream.
You sat upon my shoulders, as we walked beside the sea.
“It’s funny you should ask me that…” I told you with a smile.
…”I haven’t thought of miracles at all, for quite a while.”
We walked a little further, while I thought of what you said,
my hands around your ankles, your hands upon my head.
“I’ll try my best to answer…” I finally replied,
“…but miracles are different for each of us inside.”

“Some would say a rainbow, that arcs across the sky.
A flowers’ bloom, a baby’s smile, the twinkle of an eye.
Some would say an act of God, which cannot be explained.
Some would say the storm clouds that bring the desert rain.”
I thought about your question, and what we had discussed.
“Maybe you are asking, ‘what’s a miracle to us’?”

“Our miracle was waking, when the birds began to sing.
Those lazy cartoon mornings, when we didn’t do a thing.
Our miracle was mid-day, in the sun that shone so bright,
and all the afternoons we played, and ran with pure delight.
Our miracle was evening walks, as stars would slowly peek.
Our miracle was night time, when I used to watch you sleep.”

I realized I’d stopped walking, and it was then I knew.
“My miracle was every day I got to spend with you”.
We stood in silence, then you said “Please Daddy, don’t be sad…”
“…Don’t live within the time we lost; remember what we had.”
We looked to the horizon; I hugged your legs so close.
“Please stay with me a while, son, don’t leave me here alone.”
You walked with me till morning, though I lay there in my bed,
my hands around your ankles, your hands upon my head.

 

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Milestones

Posted on November 1, 2015 by Matt

Being a heart-Dad is a constant lesson in perspective.  The last six years have taught me to do my best to appreciate each day, and to make the most of our family time.  I have to admit, this effort is met with limited success sometimes.  It’s very easy to set this way of thinking aside when times are normal and things are going well.  I suppose even though I try not to take things for granted, I still do, just not as much.

Back in June, Alexander’s school advised us they would not be having a formal Kindergarten graduation ceremony.  When Sydney graduated from Kindergarten, there was a fantastic little ceremony in the school library, over lunch.  Each child had a graduation hat, and was awarded their Kindergarten diploma, which was presented by the principal.  Each child also addressed the group of parents and other relatives gathered, told us what they loved best about Kindergarten, and what they were going to be when they grew up; I anticipate no shortage of professional hockey players or hairdressers for the foreseeable future.

The gathering was cute, and likely as much for the parents as it was for the kids.  I have to admit though, I never really thought of it as one of those life events that will always stand out.  You know, the ones that really signify the beginning of a new chapter; earning your driver’s licence, graduating high school, getting married, having kids…

So I thought about it for a while, and realized I still remember my own Kindergarten graduation!  I remember standing in front of my little school in Cookstown, Ontario receiving my diploma from the principal, and wearing my little hat.  I don’t remember what my career ambitions were at the time, suffice to say I likely fell back on plan B since I’m not in the NHL.

I have no doubt there are good reasons Alexander’s school came to this decision, reasons that might make sense for most of the other kids or parents.  The teaching and administrative staff have been remarkable over the last couple of years.  It is clear how much they care for Alexander, and our entire family, so I believe we were simply a victim of policy change, and not reluctance on the part of the staff to participate.  However, I came to realize that Alexander was going to miss out on something I’d taken for granted as part of his early school life, and it made me sad.

As a heart-Dad, or the parent of any child with a complex, and progressive disease, I suppose I don’t take the milestones for granted any more.  I can’t.  I remember when Alexander was first born, and we found out about his CHD, one of the first questions I asked was if he would be able to go to school and play sports!  Perhaps a naive question, I think the response was “let’s just worry about getting you home for now,” but I remember feeling very afraid that he might not have the same opportunities as the other kids to achieve those milestones we all take for granted.  My biggest concerns focussed on the “normal” things, the things we all want for our kids.

That’s why, when we were told there would be no graduation ceremony for Alexander, my wife and I decided to speak with the principal.  In the discussion, we explained our disappointment, and the significance of the little milestones, and we had a proposal.  Michelle and I would host a small graduation ceremony for Alexander at our home on the weekend, and Alexander’s teacher, ECE’s, and EA’s were invited to attend.

As close as we are with Alexander’s teaching staff (they really are remarkable people), we still felt a little strange asking them to give up their Sunday afternoon, but the response was even better than we hoped.  Our idea wasn’t just met with acceptance, but excitement, and it made for a very special afternoon.  If  you ever want to blow the mind of your six year-old, invite his entire classroom staff over for dinner sometime and watch those worlds collide!

Alexander was presented with a formal graduation diploma signed by his teacher and principal, and a beautiful photograph book of Kindergarten memories from his teacher.  His ECE made him a little hat.  He told us all about how he wants to work on tall buildings and buy an RV when he grows up.  I think everyone was grateful for the opportunity to be a part of a very special afternoon, and of all the Kindergarten graduation ceremonies that his teaching staff have been to, or will attend in the future; I believe that Alex’s will be one that stands out for a long time.  You see, when milestones can’t be taken for granted, it makes them all the more special to be a part of.  When you can’t just assume milestones will be met, it makes the ones you achieve that much more important.

I hope Alexander will achieve all the normal milestones we all want for our kids.  I hope to teach him to drive; I hope he graduates high school, and then learns a trade, or goes to college or university.  I hope he gets married.  I hope he has kids.  I hope for these things more than anything else in the world, and I do believe he can do it all.  It doesn’t seem like so much to ask for, to be honest.

There remains however, a large gap between a father’s hope, and an uncertain future, and I won’t take a single milestone for granted.

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Posted in CHD, Congenital Heart Disease, Father and son, Health, Heart, school, Uncategorized | Tagged , , , , , , | Leave a comment

Why Us?

Posted on October 20, 2015 by Matt

I’ve never been one to give into feelings of despair.  I’m a generally positive guy, and pretty good at keeping a level head and remaining optimistic about the future, even in the face of a daunting reality (I am a lifelong Maple Leafs fan after all).

This side of my personality has served me well in my role as a Heart-Dad, though that’s not to say I haven’t had my moments.  There have been some pretty good breakdowns, few and far between, and they usually happen when I’m driving alone.  The next time you see a weepy guy parked next to you at a red light, it’s ok, he’s probably just a Heart-Dad.

I think something that we have in common as heart parents is that at one time or another, we’ve all imagined what our lives would be like if the worst happens.  What if he doesn’t make it?  How long do we get to have him for?  For me, these thoughts creep in from time to time when I’m thinking about the future, and they crush me when one of our friends loses their little warrior.  I know that the medicine and science continue to advance, and without a doubt I’ve seen miracles that should restore my confidence, but the doubts still weigh on me from time to time.

I remember in the weeks leading up to Alexander’s first surgery, I was feeling particularly overwhelmed.  It just hit me one day that this entire situation really didn’t fit into my plan.  Leading up to Alex’s birth, everything seemed pretty well thought out… business was good, we were into our new house, my daughter was thriving, the new baby was coming, and summer was on its way.  Nowhere in my plan did it read “become a heart-parent and learn the meaning of fear and uncertainty”.  I was sitting in the office of my family doctor, discussing Alexander’s upcoming operation, when I finally said those fateful words…

“Why us?  What did we do?  Why did this happen to our baby?”

Now I know that thinking like this isn’t healthy, but I said it anyway.  I’m not sure how I was expecting my doctor to respond, after all, it was more of a rhetorical “woe is me” sort of question.  You should understand, I’m 37 years old, and I’ve had the same family doctor since I was eleven.  Our relationship is strictly professional (we don’t hang out after work), but there’s a bond there, a familiarity built over years of watching me grow up.  I guess I was expecting her to say something comforting; the response I got was something different…

“Why not you?” she asked.

I remember being really surprised.  I felt a little angry actually, because I didn’t find her response particularly helpful in the moment.

“In my line of work, I hear lots of people ask that question, and then they leave it there, and just go on feeling sad and bitter.  My advice to you is to try to answer the question you just asked me,” she added.

I’ve given her response a lot of thought since then.  “Why not me?”  It’s a strange point of view.

Well, we live pretty close to SickKids, so getting to our appointments isn’t too challenging. My career offers good flexibility when I need it (I run a company with my brother), so I get the time away I need.  I’ve also got a wonderful team at work, and someone I trust completely to manage the business while I’m off, so that’s helpful.  My wife Michelle and I balance each other perfectly as we deal with the stress of our situation; we’re usually able to stagger our little breakdowns so we can support one another.  Alexander’s sister is incredibly patient and gentle, and her personality is well suited to growing up with a heart-sibling.  Alexander has three sets of loving, engaged grandparents, who are incredibly supportive and involved.  He’s also surrounded by incredible aunts & uncles, godparents and friends.  The staff at his school is remarkable, and very caring.  We have a strong faith and are a close family.  We even live next door to a recently retired SickKids nurse.

“Why us?” I asked once.

“Why not us?”  I reply today.  We’re actually uniquely well equipped to handle this.

I know that even among heart-parents, it might seem like rationalization, but believe me, I’ve given this a lot of thought.  I suspect that if you actually try to answer the question, you might find you’re the right choice for the job too.  At the very least, it will make you evaluate your situation, and might make you thankful for some of the little blessings you took for granted.

Perspective is something I think about a lot, and with that in mind, consider this.  That precious little heart-baby didn’t just become part of my life, Michelle and I also became part of his.  From that perspective, when God chose a family to raise a child with a complex heart condition, for however long we have, He chose right when He chose us.  There has never been a doubt that Alexander is in the right place, and I am so grateful for him.

“Why us?”

Because Alexander is our son, that’s why.  In the end, it could be no one else.

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Originally published on “Joshua’s Hope”, 2015.

Posted in CHD, Congenital Heart Disease, Health, Heart Dad, Right Atrial Isomerism, Uncategorized | Tagged , , , , , , , , | Leave a comment

We Didn’t Know

Posted on September 29, 2015 by Matt

The more heart families we get to know, the more I think about a simple division that exists for parents in our situation; those who knew about their child’s condition before they were born, and those, like us, who did not.  Alexander was born in May of 2009, and as time passes and I see new families step into the shoes we wore six years ago, I find myself giving a lot of consideration to those early days after Alex was born.  I remember it being very difficult at times to sort out my feelings, though the passage of time allows for some internalizing and self discovery.  I don’t think I realized it at the time, but it turns out I was angry.

I think my family and friends would tell you I’m a pretty calm guy.  I actually don’t remember the last time I got really mad.  I don’t like conflict, and typically try to solve problems through compromise and consensus building instead of arguing a point.  I don’t like feeling angry.  But it turns out, I was, and here’s the strange thing…  I wasn’t angry at the world for putting us in this situation, and I wasn’t angry at God for putting this plan in place without running it by me first.  I was angry because most of the other parents we spoke with knew this was coming, and we didn’t.

For a long time, we just accepted that Alexander’s CHD was simply missed during the routine prenatal Ultrasound.  After all, the heart of a baby is a tiny little thing, and surely the differences between a healthy heart and a CHD heart are small and subtle when seen through sound.  After a while though, things began to suggest that Alex’s condition was more conspicuous than that.  Right Atrial Isomerism is very complex from a physiological standpoint.  It’s one of those CHD’s that bring with it multiple complications, and lots of fun acronyms (ASD, VSD, DORV, TAPVR, etc.).  There are also several anomalies present not related to his heart.  His liver and stomach are reversed, and he’s got no spleen, just to name a couple.  Surely some sort of flag should have gone up in the Ultrasound right?  Looking back, things started to hit home when Alexander was moved to the NICU at our local hospital for evaluation a few hours before being transferred to SickKids for the first time.  The sonographer performing the echocardiogram was very honest.  “I’m not qualified to offer any feedback.  I don’t understand what I’m seeing”.  If it was so obvious just after Alex was born that something was really wrong, why didn’t they see it before?

Well, it turns out some signs were present.  During our first prenatal ultrasound the results stated that the pictures of the heart were “unclear”.  They needed to schedule a follow up after he developed a bit more to get a better look.  I’ve often wondered if the initial pictures were in fact, unclear, or if the radiologist simply assumed they couldn’t be right.  We’ll never know.  It was during the second ultrasound that it appears the mistake was made.  “We got a clear picture, and everything looks fine…”

It wasn’t until after Alexander’s Glenn/Coles procedure that we eventually decided to ask the blunt question.  After one of Alex’s cardiology clinic appointments, we simply asked his cardiologist.  “Should someone have seen this coming?  Should we have known about Alexander’s condition before he was born?”  Our doctor paused, I think considering his response.  He then deferred to the cardiology fellow shadowing him… “What do you think?” he asked the other doctor.

“In my opinion, the physiology of the top part of the heart could have been missed in a routine prenatal ultrasound.  However, under no circumstances should the single ventricle physiology, or the configuration of the pulmonary veins have been missed on a follow up ultrasound focused specifically on the heart,” he said.

Our cardiologist agreed.  He then asked us a question I’d never really considered.

“Now that you know, you need to ask yourself… what would have changed?” he asked.

It was such a simple question, and I should have had an answer.  I know that Alex would have been born at Mount Sinai and immediately moved to SickKids, but in the end everything worked out okay with him being born in Newmarket too.  So what would have changed?  Why was I angry about something I really hadn’t properly considered?

“We would have been prepared,” was all I could come up with.  Our doctor smiled, likely at the absurdity of my response.  We wouldn’t have been prepared, nobody can be.  Sure, we might have been all set up logistically.  Grandparents would have been on call, time would have been booked off from work, maybe we would have had a pediatrician all set up… but prepared?  I doubt it.

And what about all the countervailing “what ifs?”  What if we’d been assigned a different cardiologist?  What if we never met Alex’s amazing pediatrician, who we actually pretended to know just to get an initial appointment?  What if the added stress to the end of Michelle’s pregnancy had resulted in something catastrophic?  What if we’d been told Alexander was unlikely to survive?

I admit, I assess these from the position of a parent whose child has done extremely well given the complexity of his disease.  It’s easy to look back without regret given that Alexander has, so far, exceeded even the most optimistic predictions.  I also realize now that not knowing was likely the better situation for me personally.  Months of additional opportunity to consult Dr. Google about Alex’s diagnosis would not have been beneficial.

It’s okay that we didn’t know.  I might feel differently if we had, after all I doubt anyone has ever said “I wish we’d been surprised,”  but I’ve accepted the way things worked out; in large part due to the conversation we had with our cardiologist that one day in clinic.  What would have changed?  Probably nothing.  What I have trouble accepting is that for a long time I gave in to anger, and even jealousy that other parents knew about their child’s CHD ahead of time, and we didn’t. It sounds ridiculous, I know.   I’ve given a lot of thought to this over the years, trying to understand the reason why.   All I can come up with is that it’s for the same reason parents snap at nurses sometimes, or fly into a rage when a custodian rearranges the furniture in the CCU waiting room, disrupting the temporary home base they’ve built for themselves.  It’s a simple reality that we’ve all faced at one time or another.

It’s easier to be angry than scared. 

There’s another reason I’m okay with how things worked out for us.  When people ask how we cope with Alexander’s CHD, I’ve often said that Alexander’s condition has just always been there, that he’s always been our heart baby.  That’s not entirely true.  I hold dear a photograph that immortalizes a memory of my young family sitting in our hospital room in the hours after Alexander was born.  It was only for one day of naive bliss, but for that one day Alexander was simply our beautiful new baby boy.  His older sister was not the sibling of a heart baby, we were not heart parents.  We had no idea what was to come in the next 24 hours.  I don’t regret what became of that family; in fact I treasure our experience since more than anything.  But I also treasure the memory of that day, and the perfection of a single moment in time, a moment made possible because we didn’t know.

Originally published on “Cardiac Kids”, 2015.

Posted in CHD, Congenital Heart Disease, Health, Right Atrial Isomerism | Tagged , , , , , , , , , , , , , | Leave a comment