Sunday 27 November 2016

Ramping up for Monday

So we got the call on Friday to say that the operation that was in pencil for Monday is now in pen.
I wrote down the instructions, which haven't changed. I mentioned to the List Lady that I was happy to sign the consent form on Monday before she went under and was told, "Gee, youu're relaxed!" Meh, just practical.

Then we had the call from the surgeon - on speakerphone with three girls who were itching to get out of the car and meet their friends at the park - explaining that he won't just go in and snip the membrane, he'll also need to dissect from both sides and widen the dodgy valve to stop the flow from making the membrane build up again. More involved but no more risky, he says.

Bit of trivia: the most common side effect of cardiac surgery is infection. About 30% of cardiac surgery patients require antibiotics as part of recovery.  Another major side effect is brain damage. (Awesome) Apparently this is not common, but happens from time to time. I guess when people are stopping your heart and mucking around with it there's a chance the flow might get interrupted somewhere along the line.

So I decided we were going to squeeze as much fun into the next few days as we could, to make Jacinta so sick of fun she'll need a week of lying around in hospital to make up for it.

Who's ready for some FUN?

We started with the Challenge Christmas party. Challenge are an organisation who support the families of children with cancer or blood disorders. They run many fun events throughout the year, on top of the work they do in hospital and out. The Christmas party is amazing. You go to a racecourse and it's basically a free carnival with all the trimmings including food and drink, plus Santa who gives the kids a really cool present.
Would you believe I forgot to get a photo with Santa?
(To be honest, she enjoyed the slide more...)
We were so funned-out by the end of it Jacinta flaked in the car and my husband and I pretty much flaked when we got home. We had planned to go to another festival in the evening but opted for a 'family night in' which is code for 'movie, effort-free dinner and some tasty snacks'.

Today's plan was to go to the Myer Christmas windows - super early in the morning so there are no crowds. Then maybe a play centre. Then we had work to do. Presents for the dance teachers, food for the week's lunches, all the washing in the world to get done. I told the girls that this week they can have gluten (i.e. sandwiches in their lunches) because Jacinta won't be home to miss out or sneak it for herself.

So what actually happened was we all slept in, had the laziest morning we've seen in months, finally got dressed and out the door by about 1pm straight to the play centre. Played for a couple of hours then realised that we'd need to be home before 5pm to get Jacinta fed, showered and into bed for the early start. Shopped for teacher presents, cancelled grocery shopping (there'll be time while she's under, let's face it) and had a quick fish n chips at the playground. Then home, shower and bed.

Now it's an early night, early start, no breakfast (solidarity with the fasting sister) and straight in to the hospital. Can't quite believe it's happening to be honest, it's all been so fast.

This time we'll be trialling a tag team arrangement at the hospital. Really not sure how it'll all go, but I guess we'll see. No-one but me has ever spent a night in hospital with her, but she's not breastfed anymore and it really divides the family in half when we keep reinforcing the idea that Jacinta stays with Mum and the other two go with Dad.

I have my fingers crossed that the old 'pull a temp and crazy heart and resp rate when Mum leaves the room' will not apply - especially since she's been spending one day a week with Dad and her sisters while I've been studying for the past few months.

And although you'd think it would get easier, with so many familiar faces and familiar lingo and routines, it doesn't. I wonder if we're at the worst stage - with Jacinta fully able to hear and understand everything we say and indicating by yes, no and emphatic facial expressions how she feels, yet not able to have a conversation about it. Knowing, at the very least, how much this is all going to hurt, and none of us able to do anything about it other than offer cuddles for comfort, especially when the necessary morphine has her bouncing off the walls.

But, you do what you have to and hopefully this time it will be the last. They say there's no such thing as false hope, only false despair. (Well, I believe that is Raymond Veras' saying, actually.)
I'm running with it!

And there's even a rainbow...(no unicorn though)

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