Me with Al0001

In October of this year, my youngest son will be going on the trip of a lifetime. He and eleven other lucky kids from across New Zealand have been chosen to go to Disneyland.

Two weeks ago, we received an invitation to apply for a place on the coveted annual trip with Koru Care New Zealand, through our association with Heart Kids NZ. Yesterday, we got the happy news he had been accepted, and we’ll happily do our bit to help raise money for the trip, as this is such a great opportunity.

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Koru Care New Zealand is a charitable trust established in 1983. It’s run by volunteers ‘making dreams come true for seriously ill and disabled children.’ Heart Kids NZ is another charitable trust. It’s committed to providing lifelong support to those born with congenital heart defects and heart disease.

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.

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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 get a diagnosis, as we went down the road of misdiagnoses and educated guesses and countless trial treatments.

Finally, after trying everything, I went back to our doctor with the whole story. She listened carefully to his chest. Her discovery of a heart murmur led to the hospital tests, which finally confirmed the problem was a hole in his heart or Atrial Septal Defect.

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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 in Pediatric Intensive Care, with a gash down his chest, in a lot of pain. His recovery process began there. Only three days out from the surgery, he moved to the high dependency unit and was already taking his first steps. Three days later we were released to go home.

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We’ve come a long way since those days.

They say it takes paediatric heart patients a year to get their energy back and a decade for the body to recover to the pre-surgery state, however, he is in good health these days. The difference with heart kids is that they are a little “fragile,” they don’t have the same stamina as other kids. They are also susceptible to emotional, developmental and behavioural problems.

My son has thrived since the surgery. Gone are the days and nights of coughing. He has quality of life and the prospect of a healthy future ahead, thanks to the wonderful doctors and staff at Starship Children’s Hospital.

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While we were in hospital, we joined the amazing Heart Kids NZ foundation. We put his name down on the list of kids interested in going to “Heart Camp,” a weeklong retreat each summer. From the age of eight, he has gone to camp every year. He’s learned adventure skills like kayaking, abseiling and rock climbing. He’s sat around campfires, and gone swimming, ridden the flying foxes and water slides. He’s made friends and had important experiences of independence. Because he was well known at heart camp, his name came up when Koru Care said they had places for four Heart kids on the Disneyland adventure.

Nat camp

My son was the right age and state of health to be eligible, so his name went forward with a lot of others. And we were lucky enough to get picked. He was excited when I told him the good news because he has never travelled anywhere or been to a theme park, and he’s always wanted to go. This sweet boy who has been through so many trials in his life, will get to go on the adventure of a lifetime, to Disneyland!

Thank you to Koru Care New Zealand and to Heart Kids NZ and to the medical staff along the way for making all of this possible and for making a boy’s dream come true.

Blessings come in many ways, even when they’re sometimes dressed as catastrophes.

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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If you can dream it, you can do it. ~ Walt Disney

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Comments
  1. davidprosser says:

    Brilliant news, he really deserves this opportunity.
    xxx Massive Hugs xxx

    Liked by 1 person

    • yvettecarol says:

      Yes! We are so thrilled, David. I don’t think anyone understands exactly how hard his first five years were, or how long it has taken for him to recover from the cure. We still have three years to go for him to reach the ‘before surgery’ state. However, we’re getting there.
      He had been hoping to go to a local theme park for the first time this year. He has never been because it’s so expensive, but he said he would rather get no gifts for his birthday if we could take him. So, that was the plan. Therefore, you get some of the gist of how big of a deal this trip to Disneyland is to him. It’s wonderful news! (((hugs)))) xx

      Liked by 1 person

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