If they refused you still have some time left. Sounds like you accept inevitable which is always a good thing!
Actually, now I've thought about it, they only refused because you'll then no longer require their services as once it's done you'll be buying a pair of clippers. Very cunning.
That must have been horrible watching him going through that. Great that's it's all working out so well though. Is this going to be a life long condition he'll have to deal with?
Definitely easier in some ways but more difficult in others as they grow up. I'm glad going down the shops isn't such a drama anymore though. No need to pack bags with nappies and food and all the baby stuff, just shove them in the car and go.
Any fixes will always be artificial (Barring new tech), so in that sense, it'll always be something he has to be aware of but hopefully his quality of life shouldn't really be impacted. Interestingly, the Olympic snowboarder Shaun White had a milder form of the same condition so that's something. (From brief reading, I think they were able to fix his without artificial bits)
Childhood is the fucker, really - because he'll simply outgrow the artificial valve and conduits they put in. We're already seeing this now - his blood O2 readings were about 90 - 95 after surgery (95 - 100 would be "normal", with anything under 90 being "low" for normal people). They've now dipped to being 85 - 90. If that trend continues over the next 4 - 6 weeks they'll need to look into doing "something". Hopefully something key hole, like a stent to enlarge his existing conduit slightly which should see him through to his next big OP, which is likely to be next year.
Next years a big one in itself, because they'll also try and fix the hole in his heart and fit a valve. The surgery in December was literally just adding a conduit to allow blood to the lungs - so comparatively basic, but they had some complexities/complications to deal with.
And then it's all a bit unclear but we're looking at open heart every 5 years until he's a bigger teenager when hopefully they can do one last one.
You won't regret it nearly as much as you think you will, and later, you'll find you actually miss it. :)
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