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)

Monday, 21 November 2016

It's all going on!

Today was one of those days when you leave to drop the kids at school and don't make it home again until after you've picked them up at the end of the day.

Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.

We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.

The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.

The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.

The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.

So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!

And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.

Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!

Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)