Countdown to Fontan

For anyone who follow this blog for the original reason – the story of a little boy with a serious heart defect – rather than for my ramblings about knitting / baking / books / nonsense, this is an important update:

The new Evelina logo - I rather like it
The new Evelina logo – I rather like it

We went to the Evelina for the Jam’s latest cardiac check yesterday* and he’s well. Oxygen saturations are 85% (scary enough to set off the alarms for ‘normal’ folk, but very good for him); he’s also gained weight and got a bit taller. I learned that an ECG is much quicker if you tell the person doing it that the Jam’s heart is on the right-hand side of his chest.

Our lovely consultant – Dr Mathur – then broached the subject of the long-expected third operation, the final stage which will complete the Fontan circulation. It’s not urgent but there’s nothing to be gained by waiting so he agreed to give us the Jam’s birthday and Christmas then schedule it early in the New Year. We’ll get confirmation of the exact date in December but it’ll probably be mid-January.

I intended to write about how I feel about this news, but to be honest I’m not sure yet. I don’t want to hand him over to the surgical team – despite their undoubted brilliance – yet I know it has to be done. If it has to be done I’d rather get it over with sooner rather than later. He seems well now and there will be a lengthy period in hospital after the procedure, but apparently after that he will be stronger and more energetic, so it’s the best thing for him. It’s not a ‘fix’ – there’s no such thing for HLHS other than a heart transplant, and that brings its own issues – but he will be (relatively) better afterwards. I worry that he’ll be in pain or frightened or bewildered that we let them hurt him. I worry about darker vaguer outcomes that I refuse to consider. I worry, but luckily my little man is strong, happy and much braver than me….

* We always try to make the most of the day in London so then we went the London Transport Museum, but that’s another blog post…


7 thoughts on “Countdown to Fontan

  1. Your little man is a bright and happy boy. He has such a strong and determined spirit. He also has special parents, grandparents and family. He has so much love in his life. xxx

  2. I remember being where you are now. My son has a single ventricle defect also, and he had his fourth Fontanniversary in April of this year. He’s 8 now, and while soccer is too much for him, he plays a mean game of baseball, gets As in school, and his sats (which were in the 80s pre-Fontan) now run around 96%. I was in a state of fear when I was where you are now – I think I always was until it was behind us. I look forward to hearing you tell us how pink your son is after it’s over. Thank you for sharing your story.

    1. Thank you for your comment – it’s lovely to hear from families who have made it to the ‘other side’! I was going to say your son sounds amazing, but that’s stating the obvious. What’s better is that he sounds like a normal kid – how wonderful!

  3. Yes, our lives are almost completely normal now. In fact, just today I was talking with a woman whose son went to preschool with Corey, and when I mentioned his CHD, she said, “I had no idea Corey has a heart defect!”

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