Sunday, November 20, 2016

Code Brown

Anyone who has spent any time with me will know that the bane of my existence, my arch nemesis, my long standing rival is…POOP💩.

I have been changing diapers since 2003.  It’s now 2016. I have 3 kids. Do the math. No matter how you slice it, it doesn’t add up.

Since 2003.  I kid you not.

For a second, I thought about not writing this post.  My kids are getting older and some issues I believe do cross the line of privacy.  Perhaps, this topic does to some degree.  I do, however, feel this is one I need to talk about.  I need to talk about it because nobody wants to talk about it.  Vacating ones bowels is gross, messy, smelly, nobody admits to it…but we ALL DO IT!!  I have written about my son’s pooping issue before in 2012 Blog Post. We are now in 2016 and quite literally in the exact same potty training stage.  The non-existent one.  I have met a lot of people during our journey with a special needs/medically fragile child, but I have yet to meet someone who has a child with a similar problem with elimination.  And that is why I have to talk about it.  There are people out there, frustrated, struggling, feeling like failures, at the end of their rope, I know there are…I am talking to you! 


The Poo Odyssey…

Let’s back up a little.  For those of you who do not know our poo story, I will give you a quick synopsis…

My youngest son, Owen, was born in 2008 with Hypoplastic Left Heart Syndrome.  From the very beginning, his ability to eliminate waste was an issue.  He was 2-3 weeks old when we had to try suppositories and laxatives. Owen is now 8 years old, and still struggles.  He is not toilet trained and does not get the urge to go.  His stomach is very distended, as is his entire digestive system.  We rely on gravity and high doses of Polyethylene Glycol 3350 (Lax-A-Day, peg flakes)to keep his system moving.  He has had an in-house “clean-out”, an O.R. disimpaction, a biopsy, barium enema, and several other tests in a desperate attempt to find the source of his stooling troubles.  The only diagnosis that has come from all of these procedures is that he has a motility issue.  Well, duh?!  But why?!

Owen has a severe and critical heart defect.  Having a fully functioning heart is needed to  maintain the rest of the human body.  Owen is lacking in that department, thus, other systems in his body cannot work properly…his gastrointestinal system is what his body has decided will suffer.  Some children will have kidney function issues, liver problems are very common, feeding and growth, having a severe heart defect will mostly likely cause issues with other bodily functions.

So, in short, my son cannot poop because of his heart.

Enter the C-Tube…

In the next few months, Owen will have a cecostomy tube inserted.  The C-tube will be a port that goes from his tummy to his cecum(beginning of large intestine).  Much like a feeding tube (or G-tube) goes from outside the body directly to the stomach. This will allow me to flush out his bowels from the top down.  Everyday, 200-400mL of saline solution will be pumped into his c-tube. For about an hour or so, Owen will have to sit on the throne and wait for everything to come out.  I know, sounds like a party, we are thinking of putting a TV in the bathroom.  You would think this would be devastating news….but it is not.  This could potentially be a life changing procedure. This could mean that for the first time in his life, Owen could become dry.  He could potentially wear underwear and not worry about soiling.  He would no longer have diaper rashes so bad that his skin breaks.  His clothing would stop having a lingering odour and require multiple changes throughout the day.  His grade 3 teacher would not have to change him at school.  He could go swimming at the beach or pool and not have to be embarrassed by dripping.  His stomach would shrink to its intended size and he would stop having pain.  He would not need a grown up to escort him to the bathroom and change his diaper.  We would no longer have to worry in public when he begins to emit strong, unpleasant smells.  As an 8 year old still in a diaper, it is a matter of time before he begins to feel shame or he gets teased for it.  But most importantly, this procedure has a good possibility of teaching his body what it needs to do.  If his G.I. system can be retrained, he could learn to go to the bathroom on his own.

This. Is. HUGE!

But first things first…the procedure.  


In the meantime, let’s talk shit…



Monday, October 24, 2016

Parenting Heart Kids VS Heart Healthy Kids

Parenting and raising children is hard.  

Full stop.  

I have had the experience of raising both heart healthy kids and a heart-not-so-healthy kid.  I have vague memories of living in a world where I new nothing of congenital heart defects, oxygen saturations, warfarin, transplants lists….ignorance was bliss.

The reality is, those days are done, and living with a heart kids is a whole other dimension. After consulting with other heart parents, I present to you 5 very common situations most parents can relate to…and how heart parents deal.

Parenting Heart Kids VS Heart Healthy Kids

1) Imagine…you are doing the dishes…ok, let’s be real, you are on Facebook.  In the the other room you hear a sound.  “AAAAAHCOOOOO!”

Regular Mom:  Aw crap!  This kid better not be getting sick, again!

Heart Mom:  I need a BP, HR, RESP rate and an o2 sat check, STAT!

That time Owen got an ear infection
in Florida that lead to an allergic
reaction to penicillin
And you think I exaggerate…sadly, I am not.  I do not know how many times Owen has been admitted to the hospital for the common cold.  For heart kids, turns easily into pneumonia, bronchitis, lung collapse, RSV…all of which can be fatal.  Toddlers are sick, A LOT.  With immature immune systems, growing lungs and the need to lick everything in sight, it’s not surprising.  But for kids with a heart defect, some of which have compromised immune systems to begin with, this normal phase of most every kid’s life has turned into warfare, where every season brings a new mine field to navigate.

2) One of your older kids runs up to you, “Mom, Abby is sleeping on the couch.”

Regular Mom:  Dammit!  She will never fall asleep at bedtime!

Heart Mom:  Runs, nay flies over to check for breathing.

Paranoid?  Not in the least.  For kids with heart defects, this is our reality.  There are several heart defects where sudden death is not unusual.  There are a lot of of households who have AEDs(defibrillators) in their homes for this very reason.  Parents are taught about indicators of heart failure and when to call 911.  But the truth is, every child is different.  Unfortunately, the text book signs and symptoms do not always apply.  We are hyper vigilant to any changes in behaviour, sleep patterns, breathing, skin colour, energy levels…our greatest fear is that we miss something and we lose our baby.

3)  The kids are running around playing on a beautiful summer day.  Your 6 year old son runs up to you and says, “My heart is beating fast!”

Regular Mom:  That means that you are working up a sweat, kiddo!  Keep running!

Heart Mom:  Does a heart rate check and calls 911.

In the world of raising a child with a heart defect, this scenario is GOLD.  This ties in with number 2.  As parents, we fear that we will miss a sign or symptom when something is terribly wrong with our baby.  Babies cannot tell us when something is not right and as parents we play a guessing game…which sometimes feels a little like Russian Roulette. As our babies grow into children, we send them out into the world and a new fear emerges…that someone ELSE will miss the sign that something is wrong.  Our greatest hope is that our child will tell someone they need help rather then relying on someone else to figure it out. When your child can tell you something feels wrong or funny or different there is a sense of relief that comes with it.  We cannot see what is going on inside their bodies, however, when they can begin to tell us we can act on it. 

That time Owen hit his head
and required a CT Scan to rule
out a brain bleed
4)  Once again you are on Facebook, or perhaps this time binge watching a new tv series. You hear a loud BANG!

Regular Mom:  Stops and listens for crying, then carries on with what she was doing.

Heart Mom:  Is off and running…

A lot of heart kids are on blood thinners.  There is nothing more stressful then having a kid on blood thinners.  Nose bleeds turn into ambulance rides, bruises turn into massive hematomas and bumps on the head turn into brain hemorrhages.  I’m sure you get the picture.  Every cut is a virtual blood bath…if CSI ever came into the house of a kid on blood thinners, we could illuminate the world.

5)  Your family sits to plan a vacation…you have been saving for a while and everyone is excited.

Regular Mom:  Ok, everybody…start brain storming!  Where should we go?  A cruise?  An all-inclusive resort?

Heart Mom:  Ok, here is a list of Children’s Hospitals who have a paediatric cardiac unit…

Welcome to travel CHD style!  It may not seem like a big deal, but I speak from personal experience.  You are VERY limited.  Even now, if I walk into my local hospital emergency room, I will have to explain my son’s medical condition to all staff (yes, including doctor’s) because most of them will have only heard of Hypoplastic Left Heart Syndrome in passing, if at all.  That is very common to all hospitals.  Some of the more complex heart defects are so severe that most cardiologists will not be able to treat our children without consulting with a specialized paediatric cardiologist.  If you are travelling in a country or city where you have access to only a standard hospital, you could very much get into trouble.  We had one experience in Florida.  Owen became ill rather quickly and we set off to the nearest hospital, which for the record, had a children’s cardiac unit.  Even with all my research and preparation, it took over 5 hours, two doctors and two charge nurses and one shift change to get blood work.  Luckily, Owen was fine and was given antibiotics…however, just prior to discharge, the doctor confessed to having become nervous watching Owen’s heart rate.  This situation could have been much worse on a cruise ship or island vacation.

There it is folks.  We are not over protective, sheltering helicopter parents.  We are just trying to keep our kids as healthy as they can be…we know the fragility of life and how quickly things can change.  We are the medical experts on our children, we have seen them through every procedure, engrained every word their cardiologist has said into our memory, we have become doctors ourselves.  

We may seem a little crazy, but frankly, our kids drove us to it.


*names have not been changed to protect the innocent

Thursday, September 24, 2015

Mission Completion

After Owen was diagnosed with a heart defect, we were told the only chance of survival was a three staged surgical intervention…the first starting at 7 days old.  Those first days in the hospital were a whirl wind of emotions, a crash course in cardiology, a test of sanity, an experiment in sleep deprivation and a stress endurance test.  My husband and I quickly realized that looking at the big picture, all that Owen would have to endure in order to survive, was seemingly impossible.  We had no idea how a newborn baby was going to sustain 3 open heart surgeries.  So, we got realistic, we stopped looking at all he had to survive and only looked at the next step.  Whether it was getting Owen successfully to the next surgery or to the next procedure, our mission never extended past a few months.  There were times when we could only set goals as far as the next minute or the next second.  He had to stay alive just one more minute….


After a long 6 years, Owen has survived all three stages.  We saw him through every surgery, every procedure, every complication, every victory.

Exhale.

After the last and final stage of his heart reconstruction, Owen’s recovery was swift.  He was on his feet and walking 3 days post op! Owen did struggle with fluid draining issues but that is a fairly common complication and in most cases easy enough to manage.  After being admitted for a short 12 days, Owen was discharged and back home.  This was a record breaking short stay for Owen.  We were beyond thrilled with his eagerness to get back to his home routine and back to school with his friends.  We discovered that Owen had more energy than he had ever had before.  His running around did not stop from morning until night.  He is able to play outside in the snow and enjoy all the things healthy hearted children love about being outdoors.  He was cashing in on six and a half years of lost outdoor time!

So, now what?
  
Almost 7 years ago,we naively thought that once the 3 stages were completed, Owen was done.   But it is not over, not by a long shot.  He will, for the rest of his life, have a specialized cardiologist monitoring him very closely.  There are medications he will be on for the rest of his life.  It is almost certain that he will require more procedures…but when?  There is no answer.  For six and a half years we were living with the goal for getting Owen to the final stage.  His entire life was about getting to the fontan.  Now that we are here, we are left in a strange new world.   The number of adults who are alive with Owen’s defect is very small.  It was only in the mid 1980’s when the possibility of surviving this defect was made possible.  There are no older adults with his defect.  They do not exist.

None.  


Our agenda is a little bit different now.  While we cannot ever act as if his heart is fixed, we can continue trying to give him as ‘normal’ a childhood as we can.  We let him play and go to school like other 6 year old boys.  We sign him up for sports just like we do his brother and sister.  We do our very best not to limit him or stop him from trying anything he wants.  We work on teaching him to listen to his body when it says, “I need to catch my breathe”.   We expect him to tidy up after himself, put his dirty dishes away and put his laundry in the hamper.  Owen will always have challenges in his life, be it heart related or side effects of having a congenital heart defect.  While we can never become complacent and must remain vigilant in monitoring him for signs of trouble, we can breathe a sigh of relief that for now, there are no major procedures in the horizon.

*Originally posted May 27, 2015 on the Cardiac Kids Blog

The First 24 Hours...

After 6 hours of waiting, we walked in...not sure of what to expect.  I mean, I had images in my mind of what he would look like, after all, we had walked into to the CCCU 4 times prior post-surgery.  But this time, he was no longer a baby.  This time he was a 6 year old boy. 

The boy that was wheeled into the operating room high on medaz, laughing and giggling was switched with a boy, covered with tubes and wires, seemingly struggling to take every breath.  He was, for the moment still, excepts for his gasps.  Then he started writhing and ripping at tubes, punching the air and his eyes were filled with panic.  We immediately went into CCCU Mode.  Every instinct to grab and pick up your child is ignored, you push your emotions to the side, you become a medical advocate for this child in front of you.  What medications are being pumped into him?  What are his vital signs?  What is being done for pain?  What is the immediate plan?  Is this in-drawing normal?  How much O2 is he on?  After a few moments, he stopped, almost as suddenly as it started.  After a short ten minutes of peace, he once again began writhing.  It was indescribably painful to watch.  I had to fight
off my own panic to help him calm down and settle.

Owen has been through so many procedures in the past that the sedatives are no longer as effective.  He is much more alert and aware then the majority of kids who have just had major reconstructive heart surgery.   They could no longer give him sedatives...as he was beginning to have apnea-like spells, signalling that if he received anymore medication, he would stop breathing altogether and have to be intubated.  He was breathing through his mouth and his lips were beginning to crack and split.  You could see his tongue and mouth were completely dry.  Occasionally he would suck a few drops of water from a sponge.   


This is how our night began.  Every 10-15 minutes he would awake in a panic. At one point in the early morning hours he had kicked off one I.V. resulting in the foot of his bed covered in blood.  Every time someone spoke or walked into the room he would bolt into the air.  Ripping at the central line in his neck causing it to ooze blood.   We quickly learned, that when he did wake up, our face was the first thing he had to see, otherwise, calming him from his hysteria was much more difficult.  I took first shift, I am by nature a night owl and the late shifts were always mine.  Brian, is an early bird so these shifts work well.  There is never a moment that Owen is without my husband or myself while in the CCCU.  By early morning, Owen was so exhausted that his bouts of sleep were stretching from 10 minutes long to 20 minutes.  Though, every touch would cause him to jump.  Any sudden noise would wake him.  We had assumed as many nursing duties as we were legally allowed to do.  The lights were dimmed and everyone spoke in barely a whisper.  All to make this, the first 24 hours post op, as painless as possible.  

*originally posted on February 17, 2015 Cardiac Kids Blog

Monday, February 16, 2015

Brace For Impact

The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. 
Insert P-A-N-I-C.
These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.
But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…
We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.
This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.
*Originally posted on January 6, 2015 on the Cardiac Kids Blog

Marathon Friends

Friends and family are a lifeline and pillars of support when faced with seemingly insurmountable obstacles. I have always said (as have many others) that weddings and funerals bring out the best and the worst in people. This adage also applies to having a sick child. My family and I have been very lucky to have a large circle of support to help get through our struggles with Owen’s heart. I don’t just mean the big things either, like child care for my older children or preparing meals on a daily basis, even the smallest of acts of kindness can make the biggest of differences. An extra large coffee in the surgical waiting room can do wonders. The support does not end out of the hospital. For babies born with congenital heart defects, their battle is life long. There is no cure. Their journey, their life is the ultimate marathon. We have some truly amazing people in our lives that have been there for the long haul.
But then….there are those extraordinary people who turn up and write a children’s book about your child to raise funds to help your cause. And that is exactly what happened to my family.
I met  in grade 7 (only a few short years ago). We remained friends all through junior high and high school. In fact, she was the one who introduced me to my husband (again, only a few short years ago). As with most of my school friends, we lost touch in university being separated by cities and provinces. But then along came the Facebook era and we were reunited.
And then Owen was born. My life became a whirlwind and still is. So, Emis asked if she could write a book about Owen. Honestly, I never really thought about it much. I was like, “Sure”. Fast-forward a few years and the “The Mighty O” is officially launching.
To say that I am grateful would be an insult. There are no words to describe my feelings of gratitude and awe. The amount of time and energy put into this project is astounding. I have literally contributed only by giving birth to a very sick little boy. She has taken this project from just an idea to publication. Emis, and project “The Mighty O”, have partnered with Cardiac Kids to bring her little book idea to fruition and ready for sale.
I am ecstatic to announce that, as of October 24th, 2014, “The Mighty O” will be available to be purchased. All proceeds from the sale of this book will be going to SickKids Foundation and Make-A-Wish Canada in honour of Owen’s battle.
Books can be purchased on-line at: 
For more information you can “like” us on Facebook or to order a copy visit:


Busy Waiting

Most people think when you have a heart defect, you get it fixed and you’re done! And that would be correct for several defects. But, for those of us who have children with complex congenital heart defects this is not the case. Far from it.
Complex heart defects often times require several surgeries to correct the defect. “Correct” meaning change the anatomy of the heart so that the defect becomes survivable. It is important to remind you that there is NO CURE for heart defects. Heart defects will always be there in some way. Even when a child becomes an adult, their heart is not like a healthy adult. He/she will never have a normal heart.
But I digress…several surgeries. So, when there are multiple surgeries, there is a lot of down time. This down time is not nearly as delightful as it sounds.
In the case of Owen’s heart, the treatment is generally a 3 staged reconstruction of the heart. The first stage at birth, the second at around 6 months and the last around the age of 3. With the exception of the first stage, the last two are based on weight and health of the child. The time frames of the surgery of 6 months and 3 years is an average. Owen is 6 and has yet to have the final stage. He is a bit of an exception and is not typical of the defect.
With the potential of surgery years apart your life as a family can be put on hold. Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.
Read that again.
Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.
That means, we are waiting for our kids to start deteriorating. We are waiting for them to start becoming blue more often. To lose their breath more easily. To become more tired. To eat less. To become more cranky and irritable. To get colds more often and take longer to recover. We are waiting for our kids to start dying.
In the meantime, you cannot plan for things much more then 2-3 months at a time. Because, like us, you never know when this “deterioration” will start. In general it is a slow deterioration. Though, it is not impossible for an illness, such as a common cold or flu, to kick start it quickly, very quickly. For Owen, it has been this past summer….but it has been a long time coming.
Owen, ideally, should have had surgery years ago. But years ago, he was in such terrible heart failure, surgery would have killed him.   He has been on medications to improve his heart function and under the watchful eye of a cardiologist. The decision has been made to take the risk and repair his heart.
Yet, we are still waiting. Because now we are waiting for a surgery date. We are holding our breath. Owen is starting grade one, his school year will be interrupted. His brother and sister’s lives will get   flipped upside down. Our extended family will be on call. My husband will have to take a leave of absence from work. All three kids will have to, in some way be prepared….
But once this final reconstruction is complete, another round of waiting begins. Because kids with complex heart defects are never truly out of the woods. Some will need a transplant at some point, some will need several more procedures and surgeries. All will be under the care of a specialized cardiologist. All require waiting. We are permanently busy waiting.
Originally Posted September 2, 2014 on the Cardiac Kids Blog