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teddyhasaspecialheart

~ My Little Boy's Fontan Journey

teddyhasaspecialheart

Tag Archives: Children’s Hospital Westmead

Two sleeps

23 Monday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 11 Comments

Tags

anticipation, CHD, Children's Hospital Westmead, chronic illness, Fontan, HLHS, Open Heart Surgery, staph, surgery

“Two more sleeps til my operation, I’m scared I might die.”

Ted’s words today came at me like a very sharp kick in the guts.

There is no terror in the bang, only in the anticipation of it.

Alfred Hitchcock

Anticipation is indeed something that can terrorise even the littlest of people.  Knowing Ted, this is why I chose only to drip feed tiny bits of information to him about his operation. I don’t know how he made the correlation between his surgery and the very real risk of death but he did. And it was a very sad thing to hear.

We are doing our best to put his mind at ease, all the while hiding our own very real fears. This is a challenge in itself. One of the hardest things on the day of surgery is making the very long drive out to Westmead pretending to be chipper for Ted’s sake but feeling the dread building with every kilometre. Such a hellish drive. Then the long walk to the anaesthetic bay, that’s another journey we try to make fun for Ted while fighting back massive sobs.

Today and tomorrow we have to wash Ted in this weird pre-op stuff that smells like flea shampoo (he is Staph A positive) but it has the added bonus of giving him cute hair: 

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Rich and I will spend the day with Ted tomorrow being an only child for a day, doing fun things ahead of Wednesday. Wednesday won’t be fun. Today after dropping Tabitha at school at 8 o’clock in the morning I let Ted have this green frog cake full of sugar and rubbish. Just because.

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Today we won!

13 Friday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 6 Comments

Tags

CHD, Children's Hospital Westmead, HLHS, needle phobia, play therapy, pre-admission clinic, public hospital, surgery

Ted and I left home before 8 o clock this morning and we got home late in the afternoon. It was a very long day for Ted but from start to finish he was the bravest of the brave. I never expected our day to run so smoothly.

As I mentioned yesterday, my relationship with the hospital is one of love and hate. I love our team of amazing specialists, the doctors and nurses who are our heroes at The Heart Centre for Children but I absolutely hate the bureaucracy of the public system.

While we are private patients in a public hospital this means nothing other than for billing purposes. We still get lumped in a shared room with 5 other kids and their families. Excellent for disease control, not to mention privacy… Everything is geared toward the lowest common denominator. Instead of hold music when you ring the hospital you get patronising recordings about keeping hot drinks away from young children and why shaking babies is not safe. Toys are often fixed so that they can’t be stolen. It is a bit of a freak show out there to be quite honest. I could go on forever but I won’t. Just yet.

Our day began with a dash to the hospital pharmacy where they charged me $78 for a small tube of numbing cream for Ted’s blood test. See that right there is really sad. Many children would have to put up with the pain when costs are that high.

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Things looked up from that point on because our amazing play therapist met us at the Heart Centre lobby and Ted immediately perked up and enjoyed playing with the toys. She stayed with Ted the entire day, we couldn’t have done it without her.

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After appointments with his anaesthetist and the genetic researchers (we are participating in the whole-genome sequencing project as well as the Fontan Registry)  Ted had an ECG.

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Then some x-rays

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Then it was the moment we have been preparing Ted for… the blood test. He blew everyone away with his bravery. He didn’t flinch. He played Angry Birds on the iPad and Karen and I spoke to him the whole time. He was truly amazing. Normally we have to restrain him with the help of a few others. The preparation paid off.

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After doing some Angry Bird craft in the waiting room we took Ted to the Starlight Room for a break. He loved playing with Captain Starlight and playing the drums like his Papa.

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We met with some more doctors and Teddy was beautifully polite and compliant putting up with a lot of poking and prodding for one little boy on one big day. 



 I promised Ted he could choose a small toy from the gift shop for being so brave and beautifully behaved. He chose the biggest toy they had. Of course.

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We have been given the all clear for surgery on Wednesday provided the cough remains as is and he doesn’t develop fevers or other signs of a cold. We have had to up the ante on the asthma meds as he was struggling a little today. We are praying the cough settles over the weekend as it does seem to be worsening a little today…

Unfortunately Ted’s big sister has a bad case of tonsillitis and his baby brother is the sickest I’ve ever seen him with croup. We have had a few emergency doctor trips with little Monte this week. I’m praying the poor fellow starts to improve this weekend. It breaks my heart to think of being apart from my other children next week especially when they are so unwell. Ted is staying with Grandma tonight, we are trying to quarantine the sibling germs.

The last four years in an 800 word nutshell

11 Sunday Jan 2015

Posted by carolyngalvin in Uncategorized

≈ 8 Comments

Tags

Bi-directional Glenn Shunt, CHD, Children's Hospital Westmead, Congenital Heart Disease, Fontan, HLHS, Hypoplastic Left Heart Syndrome, Norwood Procedure, Sano shunt, Single Ventricle Defect, The Heart Centre for Children, VSD

Ted was born with Hypoplastic Left Heart Syndrome. Essentially, half a heart.  There is no cure and his treatment is called a 3 staged palliation. Nobody wants to hear “palliative” with regards to their child, nobody.

This means that our little boy needed a series of open heart operations to enable his single ventricle heart to work well enough to sustain his life for as long as it can. After surviving his first open heart surgery shortly after birth we were told he had a 70% chance of making it to 5yrs of age, beyond that nobody knows.

We found out half way through the pregnancy. They encouraged us to terminate our son. We refused. We adored him. We begged for a referral to a cardiologist. We decided to name him Theodore because it means ‘a gift from God.’

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What we found out about Theodore’s heart horrified us, but we held tight to the belief that every child is a gift from God and through our tears we tried to focus on the positives. We wondered if he would be like his 3yr old sister and wondered whether we would have him in our lives long enough to find out.

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We had read the studies and we saw the pictures, we knew Teddy’s journey would be horrific.  We were reasonably prepared to see our tiny baby after a marathon Norwood-Sano surgery at 2 days old. The operation is the most complex of all CHD surgeries it took all day. We weren’t prepared for the complication at 10 days that saw him back in the operating theatre. His little chest had begun to heal but already he was going back in to have a pericardial effusion drained. He had only just been extubated and he was back on the ventilator.

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Quite the little soldier he recovered well, but once he was extubated this time it became apparent that he had suffered vocal cord palsy. We were told his voice may or may not return. He was banned from swallowing and for the next few months had to be continuously fed via trans pyloric tube.

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 At two months of age Teddy faced yet another open heart operation. This time a Bi-directional Glenn Shunt and a Pulmonary Artery Augmentation.  Following a cardiac catheter procedure we then had to prepare for the Glenn- the second stage of his palliation. Two weeks earlier Teddy’s beautiful room-mate Keeley had died following the Glenn. We were very scared to hand him over for more surgery as we mourned the loss of another heartbaby. We were still heartbroken after our dear friend Erin lost Pippa to HLHS following the Norwood.

 The operation was difficult but Teddy seemed to be doing well in the first 24 hours but then things went downhill and weaning off Nitric Oxide was not successful. We had never felt such terror. It took a lot longer than it should but eventually he was extubated. Unfortunately he was not the same little boy. He didn’t recognize us anymore, wouldn’t smile and just screamed and stared into the distance. We had neurologists examine him and he underwent a lot of tests. Fortunately God blessed us and little Teddy eventually returned to normal after a few very rough weeks.

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After many months he finally came home and by his first birthday he no longer had a feeding tube and his life became a lot more normal.

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By Ted’s second birthday he was doing a lot of the things other children his age could do. By three our little miracle boy was amazing doctors and delighting loved ones as he prepared to start preschool.

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Today he is a chatty little almost-four year old, however the capacity of his single ventricle heart is waning and he is often breathless and blue. He cannot keep up with his pre-school friends and he often cries about having a ‘special heart’ and feeling breathless. It is time for his Fontan surgery. It terrifies me to admit that, but it is time.It has been set for mid- February.

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 Seeing Teddy do his ‘ninja turtle dance’ makes us very happy. It is these small things that bring us joy these days. There are plenty of sad moments like realising how tragic it is that we get so excited when we read about a person with HLHS making it to their 20’s. As though it is some major achievement to get to 21?!

It is cruel and unfair that we are facing old age without our son, nobody wants to outlive their children. All we can do is pray for advances in medical science so people like Ted can live healthy long lives and that instead of 20 being an achievement, we’d like the average to be closer to 100!

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