~ The Conundrum of the Youngest ~

What a kid. My youngest son never fails to amaze me. He’s been a walking list of ailments his entire fourteen years of life. I have had to slowly peel away the “onion rings” of his symptoms in order to get to the source of his real problems. I’ve raised all three of my kids alone. With the middle son’s special needs and the complex health profile of my youngest son, I’ve found that there is help out there, however nothing’s handed to you on a plate. You have to go and find it. You have to ask questions. You’ve got to self advocate. And, you have to keep a watchful eye on your child, keep notes, and keep going to health professionals until you get over the finish line with the answers.

My son started coughing at two weeks old.

There began the first part of our medical mystery tour together. In his first five years, we were in and out of doctor’s offices because of his cough. We got different diagnoses: hayfever, flu, childhood asthma, and he took lots of medicine. We tried different branches of alternative medicine: he was diagnosed with sour stomach, gluten allergy, and wheat intolerance, and we tried eating in many new ways. We tried Chinese herbal medicine as well, and they all did help a bit.

But nothing stopped the coughing. When he did catch the flu, he and I would spend long, frightening nights as I tried to keep him alive through his continuous bouts. We spent many nights at A&E.

I kept taking him back to the doctor. He was put on nebulizers, and given a blue and orange inhaler to take daily. At one stage, when things were at their worst, I spent $600 taking him to the doctor in one month. I was determined to get to the bottom of it. And, we did. Finally, on the umpteenth visit, we got a doctor who listened to his chest, and listened again, and said, “I think I hear a heart murmur.”

Those words set us on the course to finally learning what he really had, which was Congenital Heart Disorder.

We were put on the short list for surgery. Four months later, the youngest son underwent double bypass open heart surgery to have a closure of the large Atrial Spetal Defect, and repair of a partial anomalous venous drainage.

It was a harrowing ordeal he came through with flying colours. After the operation began a lengthy recovery process

It takes kids who have heart surgery a year to get over the anaesthetic, five years to get back to their pre-surgery weight, and ten years for their bodies to get back to their pre-surgery state.

My son had his surgery at the age of five, so next year he will pass the ten year mark. However, back in 2010, after the surgery had fixed his heart and healing was underway, he was still coughing.

This time, the rounds of visits were confined to a doctor and a homeopath. I felt he was allergic to something, so I requested of my doctor that we be sent for allergy testing. The result was, he was allergic to cats, dogs, fish, dust and egg. On a scale of one to ten, he was allergic to eggs at a ten. Eggs were off the menu. He was put onto daily antihistamines. Our homeopath prescribed homeopathic tinctures to help him get over flus and colds. All good except he went on coughing.

Long story short, we discovered the youngest son had asthma, not the ‘childhood’ variety, but the real kind.

Leapfrog a few years to last week. After years of the youngest son being teased in the family for being deaf, I finally decided to have his hearing tested.

To my surprise, we discovered he has a retracted eardrum and a loss of hearing. I thought, that makes sense of a lot of things. We’re seeing the specialist in four months, at Otorhinolaryngology.

This week, I followed up on another worry. I’ve always worried that the youngest son injures his ankles easily. A recent sprain wasn’t getting better, so I took him to a physiotherapist and a podiatrist. Turns out, he has a twisted pelvis with one hip more forward than the other. And he has an in turned foot. That explained a few things. Nevertheless, with daily exercises and an insert in his shoe, we can fix what could have been a developmental problem for him, in future. I’m so grateful. (I’m also thinking, what the heck with this kid?)

However, with each new diagnosis life gets easier. We gain new tools. Getting the answers is the thing. And from here, all is possible.

Talk to you later.

Keep on Creating!

Yvette K. Carol

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Failures I consider valuable negative information – Dr. Goddard

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~ A CALIFORNIA ADVENTURE ~

A few months ago, our family got some great news. The youngest son had been chosen as a “heart kid” (a child who has undergone open heart surgery) to go along on this year’s ‘California Adventure.’ A trip to Disneyland is organized and run each year by Koru Care Charitable Trust NZ, ‘making dreams come true for seriously ill and disabled children.’

I overheard a conversation the youngest son was having yesterday with friends while playing Fortnite. One member of the squad asked, “Why do you get to go to Disneyland?” and another answered, “It’s his reward for surviving heart surgery.” That’s the truth and yet, my youngest felt bad about accepting the gift. He said he felt someone else should be going on the trip in his place because he ‘didn’t deserve it.’

And so, I gently reminded him of the terrifying journey of the first five years of his life. It was an endlessly harrowing ride for me as his chief nurse and caregiver.

The youngest of my three boys was born in 2005, with complex congenital heart disorder (or CHD), although we did not know that at the time. The first clue came when he started coughing at three weeks old, though he had no other symptoms of ill health.

The cough would come and go from then on, however when he did contract the flu, then his health would plummet fast and the cough would become life threatening and continuous. It took me five years to figure out what was wrong, as we went down the road of misdiagnoses and educated guesses, and countless trial treatments.

Finally, after trying everything, I told our doctor the whole story. She listened carefully to his chest. Her diagnosis of a heart murmur then led us on to the hospital tests, which finally confirmed the actual problem was a sizeable hole in his heart or atrial septal defect. The medical part of our journey began there.

In 2010, he underwent double bypass open heart surgery. The operation was later added to the “unusual casebook.” The “hole” in his heart was ‘more than just a hole, there was only a rim between the upper chambers,’ the surgeon, Dr. Elizabeth Rumball, told us later, ‘and his heart had grown a single vein from the liver to the bottom of the heart,’ something she had never seen before. Dr. Rumball had to figure out how create an autologous pericardial patch to fix both issues.

After six hours of surgery, my five-year-old woke up in Pediatric Intensive Care, with a gash down his chest, in a lot of pain. Only three days out from the surgery, he’d been moved to the high dependency unit and was already taking his first steps. Three days later, we were released to go home.

We’ve come a long way since those days. The youngest son starts high school, next year. One of the teachers asked me how having had the surgery affects him now. I said, he’s fine now, yet, he will always be that little bit “fragile,” and he won’t have quite the same stamina and energy levels as other kids. Child heart patients are also susceptible to emotional, developmental and behavioural problems. We haven’t had any issues there, so far.

He has to take daily medications and rest a little more than other kids his own age. But, generally he is healthy, fit and well. He bikes to school each day. And, wonderfully, gone are the days and nights of coughing. He has quality of life and the prospect of a healthy future ahead.

With a bit of gentle prodding on my part, the youngest son had remembered his journey and accepted that maybe it was acceptable for him to go on the California Adventure.

After another month and a half, I started the process of medical clearance for him to take the trip. I started on doing the paperwork, and buying the things he would need to take with him. I borrowed luggage and we went to get some money changed into U.S currency.

As the weeks have gone by, the pressure to have everything in order has increased. And in the last two weeks, I’ve been flat tack. Tonight, the bags are packed. The boy has had his nails trimmed, and he’s had a haircut.

Everything is done, at last.

On Saturday, he leaves on the California Adventure with twenty-four other lucky kids.

The youngest son said, “I don’t feel happy very much, but about this trip, I feel the happiest I’ve ever been.”

The joy! What parent doesn’t want to hear that?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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You don’t have favourites among your children but you do have allies. ~ Zadie Smith

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~ Different Milestones ~

As a parent, your children pass so many milestones which at the time seem incredible and wondrous: their first tooth, their first smile, first step, first day at school, first night away from home, passing the double digits, and so on. As a parent of a child with CHD, Congenital Heart Disorder, you have additional, special milestones. Surviving the surgery is the first one.

And it’s not a given. You come face to face with this brutal reality the first day you arrive in the Children’s Heart Ward for your child’s procedure. The specialists sit you down to explain the risks of open heart surgery. The real danger lies in what they call the “bypass.” The surgeons must stop the heart beating, and divert the blood, passing it through a machine while they work on the heart. This creates the threat of blood clotting. They tell you, your child may be permanently brain damaged or die. You have to sign a waiver at this point which basically says you agree to take these risks.

Next, the psychologist shows you a book of the photos of the surgery and graphic detail of the children’s chests afterwards. This is tough love; they say the preparation is necessary because otherwise, the shock for the parents is too great.

By this stage, you’re quaking in your boots, trying to look strong and brave for your child. You have to be the parent, even though you wish you could run home to your own.

Therefore, surviving the surgery is the first milestone.

My son was an unusual case, and patching the ASD (Atrial Septal defect) did not entirely fix the problem. When they took him off bypass the first time, and closed him, the surgeons saw the blood coming out was still blue instead of red. Something was still wrong. They had to open the heart again, stop the heart and put him on bypass for a second time.

They discovered an “anomalous” vein going down to the liver. This defect was “unique to him.” They replaced the patch so it covered the hole and the unusual vein. This time his blood ran red. My five year old had survived a double bypass.

He made it through that terrible first day in the Pediatric Intensive Care Unit. “OW! Mama it hurts!” were his first crying words. The second day, he said, “I need to get well!” He made it through the first few days in the High Dependency Unit, and taking his first painful steps walking in the ward. Surviving week one in recovery is the second milestone.

Then we went home and he managed the first six weeks at home when CHD children must not fall over or take a blow to the torso and getting comfortable enough to sleep every night is the tricky part. Third milestone, ticked!

It typically takes CHD children twelve months to regain normal energy levels. My son had only just started at school when he had to have his surgery. When he returned to school a month later, he could only do half days and I had to give him a piggyback home every day, because he was too tired to walk. A year later, he was at school doing full days and walking both ways. Fourth milestone!

In 2011, we returned to the Children’s Heart Clinic for a check up. Most patients get “discharged” at this point. 95% of cases survive into adulthood which is a good success rate. However my son had been added to the “unusual case book,” and as such, the surgeons asked us to return in five years, so they could check on him again.

This week, we went back for our second check-up. Returning to the ward brought all the memories back. We peeped in down the hallways. My son remembered that when I’d placed him on the metal bed in the operating theatre, he’d worried that the blanket wasn’t thick enough to keep him warm!

The nurse gave son a check up. We filled out a questionnaire. Yes, he still gets tight-chested sometimes when he runs, yes, he gets blue lips when he does a lot of exercise, and yet, that doesn’t stop him. He plays golf and soccer, he’s learning to play the drums, and he runs around as much as the other kids. He’s fit and healthy.

The nurse gave him an E.C.G. and then an ultra-sound. The heart surgeons conferred and finally announced he was officially “discharged.”

Son and I “high-fived” on the way to the car. Yes. He made the fifth milestone. “Onwards and upwards from here,” as my father would say.

What milestone has made your heart sing lately?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“It doesn’t hurt to be optimistic. You can always cry later.”

— Lucimar Santos de Lima

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