Well anyway, here's how we got on. John, Louise and I went to the appointment. We didn't tell Louise it was a doctor or that it was hospital as she's starting to recoil from the idea. The surgeon's rooms are in a suite in a different part of the city and there's no give-away medical clues apart from a model of the human heart sitting on his desk. To be honest, we came and went and I'd say Louise had no idea the appointment had anything to do with her at all as there's no examinations or scans involved.
He just asked us how Louise was and we explained her breathlessness on exertion which he was already aware of. He said that's exactly expected now that her lower body and limbs are bigger than her upper body meaning that the level of de-oxygenated blood that's circulating in her system is greatly increased causing her tiredness and panting.
First he warned us that in a child that's well, in order for him to subject her to such a big operation and all the possible complications, he has to feel it's justified. He feels it's justified. So if we're happy to consent, she's ready for surgery. Obviously we said we're happy to proceed.
This is what he's going to do:
The only difference in this animation is that Louise has hypoplastic RIGHT heart because of her tricuspid atresia rather than LEFT heart. This is good from Louise's point of view as the left side is a naturally stronger pump. He mentioned the little fenestration he'll make in the top of the heart which should give her a better outcome as explained in the video. That should either close itself eventually or need a small operation (not open-heart) to close it surgically at a later date.
Now he also mentioned the original pulmonary artery band which was placed in her first operation about 200 years ago. If you haven't ever read that post, I personally think it's the one which most captures Louise's story...read it here. Well up to this, the band has been doing a vital job of protecting her lungs. It will no longer be required so he'll remove it. The pulmonary artery exiting the heart will no longer be doing anything so I think he said he's going to just close that off from the heart to the site of the Gore-Tex shunt.
I'm writing all this partly to try and get it clear in my own mind too, it's not for the purpose of sounding technical. The cardiologist could probably write a whole post on his attempts at explaining the structure of the heart to me. I think he's given up at this stage though he seems to think I can read echo cardiographs as he's always pointing out this and that and this looks great and so on...I just nod and say 'Ooh...yes...' so as not to look too dopey!
After the operation, which is 5 hours, she'll be in ICU for a few days and then on the ward for however long the (very painful) three drains need to be kept in. They are vitally important as fluid or blood can cause congestion or infection.
She'll be in hospital from anything from a week post op (best case) to a month and a half (not so good). Of course I'll stay with her. John wants to take his turn too this time, before it wasn't an option as she was breastfed. Last time she was discharged a week after surgery so lets hope for that.
Louise will be on warfarin for up to a year which is a bit troublesome but the less troublesome medications haven't been tested on children so not used on them
Then he talked about the timing of the operation. He wants her to be 15 kilos which I'm pretty sure she is or very close to since I've just had to pass on most of her lovely clothes which I thought would last till spring to her gorgeous cousin. She's had a recent growing spurt, though I can see when she loses her baby fat she's going to be a slim little girl. I must weigh her tomorrow. We indicated that our preference would be earlier rather than later. He agreed with that because he said he prefers the children to be younger so that it will be less traumatic for them and there's some hope they won't remember it. He doesn't realise he's dealing with little miss elephant memory.
So basically we're on phone watch. I suppose the hospital will contact us. I know they have the play therapy and the psychological preparation. I don't know how long that takes. I've noticed hospitals like CHOP and Boston have those preparations too so I guess we should go along with it, though John's opinion is that her best psychological preparation will come from her own family. I tend to think so too.
Then ( and this is why I'm happy John came because I wouldn't have had the neck to ask this question) John asked him what was Louise's long term prognosis.
He said she should live many many years on foot of this operation, grow up, have her own children...
When Louise was tiny I was told that she'd be very ill advised to ever become pregnant!!
Now one of the world's best surgeons has said the opposite! I asked him again...would there be any implications if she ever was to become pregnant? He replied that one of his patients recently had a baby BEFORE her Fontan at the age of 32 and managed very well, so with the Fontan already in place it would be even better and they'd get her through.
I am absolutely delighted.
So now, I'm setting up a comfortable chair beside the phone...this might take a while...tick..tock...
BTW, if anyone would like to donate me a free iPad to keep me company in hospital feel free :-)
I don't think I need to remind you that prayers got us through before...we'll be grateful of them again. As you can see this isn't minor surgery.