Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Monday, September 19, 2011

Charlie's happy heart?

I know, it's a weird title for a blog about a boy with a heart disease. I struggled over what to name the blog, and in the end decided on 'Charlie's Happy Heart' because he really does have a happy heart in the truest sense. He is a happy boy. The nurses and doctors at Sick Kids have told us time and time again that they have seen children with better heart function who are doing much, much worse. Matt and I love Andy William's song 'Happy Heart' (lyrics at bottom) and it's just such a fitting tribute to Charlie's daily demeanour.

For those of you just joining this party, Charlie (my 6 month old son) stopped eating well at around 4 months. He went to a paediatrician who misdiagnosed Charlie's condition 4 times before, after a night of endless coughing and crying and inability to catch his breath, we packed up the car for the Big Drive into the City, and took him to the hospital. It just so happens we live near-ish to the best children's hospital in Canada, one of the best in the world.

There, they did a simple chest x-ray (that's all it took, folks!) and fairly immediately admitted us and diagnosed Charlie with Dilated Cardiomyopathy. DCM is a disease that, for Charlie, affects his left ventricle, which does not pump efficiently. An average 'ejection fraction' (the amount of blood you take in versus what your heart can pump out) is about 60% - Charlie's is about 10%. It was a scary, scary day, and one I'm sure you'll hear about in upcoming posts.

That was three weeks ago. Since then, Charlie has been put on a protocol of 4 different drugs, which he may or may not be responding to. It's unfortunately too early to tell is anything is making a difference. He has an echocardiogram (echo) scheduled for Friday, when we may or may not learn more. He has a nasogastric feeding tube (NG tube) and gets some of each of his feeds through it (he becomes too tired to eat, or too uncomfortable, and refuses about half of each bottle). He is a charmer, a flirt, and fairly intelligent from what we can tell. He is meeting his developmental milestones at the late end of normal (we'll take it!) and we love him, love him, love him.

Thanks for reading this first post. I'll post about good days, bad days and exciting trips to the hospital. It's just my way of sharing this adventure.

Happy Heart, by Andy Williams

There's a certain sound always follows me around
When you're close to me you will hear it
It's the sound that lovers hear when they discover
There could be no other for their love

It's my happy heart you hear
Singing loud and singing clear
And it's all because you're near me, my love
Take my happy heart away
Let me love you night and day
In your arms I wanna stay, oh my love

Feeling more and more like I've never felt before
You have changed my life so completely
Music fills my soul now, I've lost all control now
I'm not half, I'm whole now with your love

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