Would you have preferred they told you the intricacies of the procedure after it was done?
A lot of it did come after, to be fair. They're pretty good at telling you just enough that you feel like you "know" and getting you prepared because, ultimately, the reality is that open heart surgery comes with some big risks. But, at the same time, they're well versed in how they act and talk.
A lot of just how poorly he'd been and how complex the operation was didn't really get exposed until we started getting CC'd letters to the doctor and our local hospitals etc. The bleed in ICU was another example of that - they called us as soon as his blood pressure dropped and they were starting emergency surgery by the time we got there (Which was all of 5 minutes) but the liaison nurse did a very good job of calming us down and talking us through the surgery (We didn't see anything for obvious reasons, but she was able to peek through the screens and update us).
Then, when it's all over, you play it down and feel silly for panicking so much - until, again, you start to get the letters with phrases like "Emergency exploration after critically low cardiac output observed". Before that, every time we met a new person in outpatients they'd read his file and say "Ooh, he was very poorly in ICU wasn't he, bless him" and we're sat their thinking "Uh, I dunno - we kind of thought it was all under control!".
But, yeah, by that time you're home and dry so it has less of an impact. And, let's fact, what the fuck was I gonna do even if they do turn around and tell us we're in the shit. At that point you're very much in their hands.
Can't really fully comprehend it Dan, followed your posts on Facebook with trepidation at the time. It's all a bit incredible. awesome in the old-fashioned sense of the word.
My boy was three in December. It's pretty wild being a parent. I get ups and downs on whether I'm any good at it but I think mostly ups.
And three! Mental! I can't wait for him to start "getting into things" and being a bit more interactive, although I'm sure I'll regret saying that soon enough
It does generally get more fun but indeed more effort, once they're mobile very little is safe. And once they can express free will and demand their own way, argh.
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.
