Laura

The First 24 Hours – Owen Update

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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 waked into 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.

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Laura 

Stay tuned next week for Laura’s next post about Owen’s recovery progress.

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Brace for Impact

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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.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.

Marathon Friends

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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.

For more information you can “like” us on Facebook or to order a copy, contact: emisakbari@gmail.com

On-line sales will be up and running soon and I will do my best to plaster that site everywhere!

Laura 

Laura is a regular blogger for Cardiac Kids, to learn more about her and read Owen’s story click here 

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.

Laura

Laura is a regular blogger for Cardiac Kids to find out more about her or to read Owen’s story, click here.

Check back in 2 weeks for a post from Melissa 

Planes, Trains and AED Defibrillators

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At the best of times, road trips with the kids can be stressful. Parents take painstaking care that there are plenty of snacks, activities, DVDs and music. All in the, sometimes vain, attempt to squelch the dreaded, “Are we there yet?”. These days, our jobs have been made a little easier with iPods and iPads, personal gaming systems, in-car DVD players and shrinking laptops. The worst thing that could happen is forgetting to bring enough chargers. But traveling with a baby or child with a heart defect becomes something very different.

I grew up spending summers in Finland, taking road trips to Florida, and driving to cottages…when I had children, I had no doubt I would do the same. In fact, my two eldest children have both been to Finland twice. My expectations and plans all changed when Owen was born.

Traveling with Owen is an adventure, in and of itself, but the planning is a virtual tour de force.

Traveling with a Heart Defect in 6 Easy Steps

Step 1:

The first step in planning a trip with our son is location. We cannot travel just anywhere. There has to be access to a children’s hospital, ideally a children’s hospital with a cardiac unit. Should Owen get sick we need to know that a hospital can manage his unique physiology. Even a simple blood test can be nearly impossible with Owen’s system. On Owen’s first trip to Florida, it took two nurses, a doctor, a shift change, followed by another doctor to get one vial of blood. All in all, this entire process took over 5 hours in a children’s emergency department.

The children’s hospital requirement limits us incredibly. This rules out pretty much all South American travel, some Northern Ontario cottage trips and even several European countries. It goes without saying the countries that do not even treat Owen’s heart condition, just allowing these babies to die, are out of the question.

Step 2:

Second step is medication. Owen is currently on 8 different medications, 3 of which require refrigeration. This means that I have to be able to keep the meds cold on the way there and at our destination. Not as easy as it sounds as the kind of cooler required to effectively keep the meds cold are large and cumbersome. Once the refrigeration issue is addressed, quantity becomes a concern. Because Owen receives all his medication through his feeding tube, his meds are in liquid form. Pills are easy to count, therefore you know if you will have enough. But when the medications are in liquid form it can be more difficult to determine. Especially given the medications do not always come in the same sized bottles, it becomes serious guessing game.

Step 3:

Next step…milk. Owen has a feeding tube, and does not orally consume enough nutrients to sustain himself. He receives a feed overnight of a special nutrient enriched formula. So, we need to make sure we have his feed pump, the pump charger, feed bags, formula, feeding tube extensions, emergency feeding tube…are you still with me?

Step 4:

Step four coincides with the previous. Owen receives a feed overnight of 600mL, slightly more then a water bottle. Tube feeding parents will know what I mean when I describe the “Fed Bed Phenomenon”. The tube that connects the child to the feed bag is called, in short, an extension. This extension has two ports or openings, one that a syringe fits into for medications and one that the feed bag fits into. Fed Bed Phenomenon happens/occurs when the meds port opens during the night thus resulting in the formula being pumped into the bed ALL NIGHT. Waking up to a bed full of formula and stomach contents is messy to say the least. But at home we have mattress protectors and washing machines…but a hotel room?

Ok, so we have a location, medications, feeding matters and its complications sorted out. Next…equipment.

Step 5:

Owen has an oxygen saturation monitor and a defibrillator (you can also add the feed pump to this category). The sat monitor is important in determining when a cold or other illnesses require medical attention. The defibrillator…well, that just doesn’t warrant an explanation.These are easy enough to pack…but again just more to carry and more to find space for.

Step 6:

Finally, incidentals. These are things that most parents probably already think about, like thermometer, fever reducers, first aid kit. Ours is a little more extensive. Owen can only take acetaminophen because ibuprofen causes him to have stomach bleeds. That’s easy enough. Heart kids are at a much greater risk of dehydration. We try to make sure we bring an electrolyte solution. Should Owen start throwing up, I immediately put him on a slow continuous feed to prevent dehydration which can be deadly for a heart kid, especially one who has already had a stroke. Travel can be hard on the healthiest of kids’ tummies, so we must be prepared.

Despite this epic packing list, I am pleased to say that we have been able to travel as a family. We recently returned from a successful trip to Florida to see grandparents and go to Universal Studios. Traveling with heart kids is not easy, but worth it. As long as we are prepared for every potential disaster…easy peasy, right? Our goal is to give Owen as normal of a life as possible. Family trips are part of the deal.

Just do not forget to pack extra iPod chargers.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

Be sure to check back next week for a post from Crystal

 

 

Owen’s Story

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Owen – 5 years old

Owen was born on June 25th, 2008 with HLHS (Hypoplastic Left Heart Syndrome).  My newborn son was born with half a heart, a condition not compatible with life.

I have written those words probably a thousand times. They still hit me like a ton of bricks.

We were a typical family, almost ideal! Short of a white picket fence, we were the quintessential family.  I was a stay at home mom with two kids, a boy and a girl.  My husband and I decided to add one more to our family. His heart defect was caught in the 18 week ultrasound. Devastated does not even begin to describe what we felt. Surprisingly, we were lucky. Owen was diagnosed in utero. This meant that we were able to prepare ourselves, our families but most importantly our 2 and 3 year old children. Owen was born via planned c-section, quickly stabilized and taken immediately to the Hospital for Sick Children where a team of doctors and nurses were waiting for him.  His brother and sister were able to get a quick visit with their baby brother while I was still in the operating room. My sister carried my 2 year old in and my husband carried our eldest who at the time was not quite 4. They would not officially meet him and touch him until 6 weeks later.

This was the beginning of our “new normal”. Owen was quickly transferred to the Hospital for Sick Children.  My husband never left his side.  My sister stayed with me. She sat by my bedside until I was discharged.  Owen was born via c-section and thus I was also recovering from major surgery. It had been barely 12 hours after Owen’s birth that my husband called to tell me that the doctors needed to “intubate”.  I did not know what that meant…he told me Owen needed a machine to do his breathing for him. I was taken by wheel chair through the tunnels once a day to see my baby. I was post-op, post-natal, drugged and hormonal.  I could barely focus my eyes when looking at my son.  The monitors and machines pumping medications, counting his respiratory rate, heart rate, blood pressure, you could barely see a baby underneath all the tubes. After 4 days, I was discharged and went immediately to be by Owen’s side.  In four days, my husband sounded like a doctor, I had no idea what half the words he was saying meant.  Within days I was a virtual cardiologist.  Quickly, my husband and I began taking shifts.  One would go eat and sleep while the other was with Owen. There were times that I would sleep in the car in the hospital parking garage.

Owen’s heart defect is fatal without immediate medical intervention. Within 12 hours of being born, he was put on full life support.  By 8 days old he had survived open heart surgery, crashed, arrested for 20 minutes, had more surgery then had a stroke.  The number of procedures and tests he has been through is more then I can list. His future is filled with more of the same.  And yet this little boy smiles everyday.

When a baby is born fighting for his life, there is an entire community also fighting.  My two older children have been very much affected by having a very sick brother. They have learned about illness and death far too early.  They have learned that Owen will monopolize most of my time.  Both parents will not be at their sports events if the rink is too cold for Owen or the soccer field too hot.  Our family cannot travel to beach resorts because Owen has such a complex heart that should he get sick, the hospitals there, will not have the means to care for him.  The summer that Owen was born, they lived with my parents.  Owen’s health was so precarious, my husband and I were there night and day. When he became more stable, my husband would return to the hospital every morning after dropping the kids off at school, only to leave a few hours later to be there to pick them up. He had taken the year off work in an attempt to maintain some consistency in our kids’ lives. The reality was, their mom could not be there with them.  I was living, what seemed like a world away with my very sick boy.  We spent hours alone in a small room singing songs and watching videos.  I still remember the first time he laughed.  I knew every wrinkle, every spot, every scar on his body.  My only purpose was to do all that I could to keep him alive. I would crawl into the hospital crib with Owen most nights when he was not sleeping well.  I would spend weeks without having gone outside that when I finally ventured out, my eyes would hurt from the sun.

My baby sister got married that fall, and I was not able to do the things an older sister would do during that time…I did not get help with bridal showers, bachlorette parties or put together wedding favours. I was not able to get my dress properly fitted so my cousin did the best she could stitching it by hand. My other two children turned 3 and 5 that fall.  I take pride in creating and crafting and making each birthday party an occasion. I hand craft invitations, make my own decorations but not that Fall.  I bought their loot bag goodies at the hospital gift shop. While I was at the party, someone was sitting next to Owen.  There was somebody next to Owen 24/7.  Owen was never left alone.  He was muscle relaxed, sedated and completely unaware of his surroundings, but I never wanted him to be alone.  If he was going to die, he would not die alone.  Someone who loved him would always be by his side.

These are moments our family will not ever get back.

This is the reality of having a sick child. Nothing in our lives is the way it used to be.  Owen’s heart is always in the back of our minds.  Everyone in our lives is effected one way or another.

So, Owen’s story isn’t really just about Owen. It is about everyone who comes into our lives.  All of our family and friends.  The friends who have become family because of Owen’s heart.  His school, his therapists.  The nurses and doctors who keep him alive and care for him.  The organizations and charities we fundraise for. The generosity of strangers who have heard our story.  The media who shares his our story   and the strangers who read it.  Congenital Heart Defects is about everyone, because if your heart does not work properly, nothing else does either.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

Be sure to check back next week for Crystal’s first post!