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:
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…