~ 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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