Archive for the ‘Heart Kids NZ’ Category

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.

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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.

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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.

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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.

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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.

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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.

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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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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

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Today is Halloween in California where the youngest son continues his dream trip, ‘A Californian Adventure’ thanks to Koru Care NZ. The charitable trust is run by volunteers, who raise funds to send a group of seriously ill and disabled children on the trip of a lifetime to Disneyland each year.

When your child suffers so much due to ill health, as the parent, you want good things to happen to them.

Yet, as the parent, you’re also a bit jaded, and you tend to think, will this trip really be the ‘trip of a lifetime’ or will it be a series of disappointments? However, I’m happy to say the Californian Adventure has been all they promised and more.

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As was detailed in A California Adventure and Californian Adventure, Part 1, in the first week, the kids had been to meet the California Highway Patrol, to see the Hollywood Walk of Fame, to Universal Studios, and SeaWorld, and in the last blog post, the team were on their way to Disneyland. Imagine being a child at Disneyland for the first time, and you can stay all day through to the evening and go on as many rides as you can handle! Ha ha, I can hardly imagine the joy.

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The next day, they went to Knott’s Berry Farm, renamed “Knott’s Scary Farm” for the Day of the Dead. And, then, they visited Disney California Adventure Park.

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I love the fact that the kids aren’t being treated like kids. They aren’t expected to be in bed early every night. The team of adult carers have taken the kids out to see the sights in the evenings as well.

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They’ve given them a taste of the nightlife. They stayed at Disneyland, Knott’s Scary Farm and Disneyland California Adventure until after dark, so they got to watch the parades and ride the lighted roller coasters at night.

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They’ve dined in cool restaurants, seeing the bright lights along the way, and they’ve attended different dinner theatre, things most of these kids would never normally get to do.

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In the second week, they had another fun educational visit, this time to the LA Coast Guard and then a day at the San Diego Zoo.

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Today was a free day, and they’ve been at the beach all day. Tonight, they’ll have to fasten their seatbelts, because they’re going to a Halloween party! Then, the kids have one more day at Disneyland and California Adventure before they finally depart LAX for home.

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I expect the youngest son will come exhausted, satiated, and also, that his life will be forever enriched by this formative experience.

I’ve enjoyed watching on from afar and getting to live every minute vicariously through him, even the scary ones. I’ll let the pictures speak for themselves. The trip of a lifetime? It’s proving to be the trip of at least two!

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44877107_2379645158715632_414595559609860096_nI think one of the greatest things Korucare do with this trip is make it ‘device-free.’ The kids aren’t allowed to take phones or ipads or any sort of handheld gaming devices.

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They are thrown together for two weeks and without their phones and what-have-you, these kids are forced to communicate. And, it’s a beautiful thing to watch. You can see through the photos how close they’ve grown.

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These days, with the research done on the effects of the internet/personal phones/devices on our kids, the research has shown a decrease in the ability of children to hold a conversation.

What a brilliant idea, to make these vacations device-free. It really brings the group of kids together in a way they rarely get to experience, one-on-one, in the moment, and interacting with one another. It’s healthy for them and they need that reminder about how to function in real time with other people.

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At an event like this, where the kids are not allowed to bring their phones, you see them instantly revert to sitting in groups on the floor talking, and playing handgames, it’s the most heartwarming sight in the world. I’m so thrilled and pleased and honoured our family was one of those chosen for this special life-changing event.

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Thank you, once again, to all those who contribute to KoruCare NZ. We’ll never forget this.

Thank you!

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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“Reach high, for stars lie hidden in your soul. Dream deep, for every dream precedes the goal!” – P. Vaull Starr

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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

Last Saturday, the youngest son left New Zealand along with twenty-six other kids, on this year’s ‘Californian Adventure.’ The trip is organized and run each year by Koru Care NZ, a charitable trust based in the South Island of New Zealand, whose mission statement is ‘making dreams come true for seriously ill and disabled children.’

As the last days counted down before departure, the tension began to mount, which escalated into pure adrenalin. We all got swept up in it. The tide of enthusiasm skipped from the kids, who were racing from all parts of the country to meet at Auckland International Airport, to the parents, whether through the Facebook page they’d set up or via those who could be there in person.

The kids were so happy, it was a force to be reckoned with.

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The photos started flooding into the Facebook page, which has became my favourite port of call every day since. The organisers have been brilliant, because through the steady stream of pictures, we parents have been able to follow along for the ride.

Part one of their grand adventure has been spectacular.

The first day in California was a free day, to give everyone time to get over the jetlag. There were pictures of kids swimming in the pool and eating ice creams and visiting the local food joints. In these pictures, I can see the youngest son is still finding his feet, still feeling a bit awkward with his new companions. Their second day, they took a bus ride to visit the California Highway Patrol where the kids watched demonstrations by the officers and learned about the work they do. They received souvenirs and were allowed to take photographs sitting on the bikes and cars.

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At this stage, the kids and the adults were visibly starting to relax more in the photos, and it seemed they were getting to know one another. I could tell the youngest son had befriended the other heart kid he was sharing a room with. In the pictures, the kids were chatting and getting on.

The whole group dynamic seemed to be becoming more like a family.

The fourth day, they took a bus tour to see the Hollywood Walk of Fame. There was a video taken of the kids screaming when they saw the Hollywood sign. The excitement was infectious. They went to Universal Studios, where they visited Harry Potter’s World and the Staples Centre. In these photos, the youngest son is having fun. There is a hilarious video posted on the KoruCare page of my son and others standing in front of a huge transformer.

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The robot knocked off the son’s cap and said, ‘Pick up your hat.’ The son picked it up and the transformer knocked it off again. This was repeated four times to greater and greater laughter from the crowd, and the funny part was the transformer laughed each time too. The group of kids around the youngest son seem tight-knit, and everyone’s in a great mood. The footage absolutely made my day.

It constantly amazes me how much joy my son’s good fortune is bringing me. I’m so happy for him I could burst!

Today, being the fifth day of their Californian Adventure, the Koru Care team visited SeaWorld in San Diego. That would have been the first time my son has ever seen a display like that, and I’m sure he would have been in awe and wonder.

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The way the trip has been organized, every morning the kids are told where they are going that day, they have no idea beforehand. The youngest son’s carer had explained the intention behind it being ‘that every morning will be like Christmas morning.’

I wish I could be a fly on the wall for tomorrow morning. Because tomorrow they get to go to … drum roll, please … Disneyland!

33674968_10155287787936744_7223338404287610880_nThe reactions should be priceless. My son will be over the moon. As his cousin was pointing out to me today, ‘This is a big step up from having gone on his first roller coaster ride, this year.’ In January, the boys and I had visited our first ever fun fair. The boys couldn’t get enough of the rides, and the youngest son said it was the most fun he’d ever had. So, for a treat, in May, I paid for him and friends and family to go to Rainbow’s End for his thirteenth birthday. He spent a delirious day going on every ride. That was when he went on his first rollercoaster. And here we are, in October, and he’s about to go to Disneyland! He’ll be in seventh heaven.

I’m so grateful to the good folk who do all the fund raising for these trips and the running of Koru Care Nz What an incredible organization. Support in any way you can. Thank you!

 

Me with Al0001

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“May your dreams be larger than mountains and may you have the courage to scale their summits.” -Harley King

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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

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.’

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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.

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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.

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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.

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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.

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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?

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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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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

 

 

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.

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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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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com