Thursday, 23 July 2015

Surgery Lotto!

So I can't remember how much I've told you about the heart surgery that we've had pending for some time - in fact I think it just ticked over a year a couple of days ago.

I could check back, but frankly I can't be bothered, so I'm going to assume I last filled you in about when her platelets were low for a minute then righted themselves.

We were just hanging around waiting, waiting, not planning anything. First you'll remember it was meant to be before the end of the year - last year. Then it was decided by the surgeon to wait 6 months after chemo until the blood counts had recovered. This meant more like Jan but we had to wait until the surgeon came back from holidays so that would be more like the end of Feb.

Then of course the end of Feb and March came and went and we were told that because intensive care had been so full, and they need a spare intensive care bed before they can operate, the list had not been moving. Then they did a scan and found the aorta was thickening a bit which can narrow the passageway. This bumped us up the list a little.

About the end of April we got a call to come in for a day of 'pre-admission'. This is where they do the official bloods, scans, information, consent etc so it's all ready to go. These tests etc are valid for 4-6 weeks. We were then on alert, expecting the surgery to happen within about 4 weeks...and, nothing.

I had pretty much given up expecting a call when I got a call to say that Jacinta had made it to the top of the list. It felt like when you're waiting on the phone and you hear "your call has progressed in the queue", or even on those modern ones that tell you, "you are second in the queue" etc. The lady in the office who rules the surgery lists was checking our availability for the following week and the week after. Things were getting exciting. This was about the middle of June.

So I was checking in with her every couple of days. Then Jacinta had a runny nose which went away again, and they can't be sick with a cold if they're having bypass surgery. I was to ring back on the Monday to work out a day for that week. Instead I rang back on Monday to say that she had the biggest green snotty nose I'd seen in some time, and she wasn't up for surgery.  Later that week we had a follow-up with the cardiologist and they said we'd need to wait 2-3 weeks.

By this time I was kind of going a little spare, since life had been on hold for the better part of a year. We'd been trying to book life in and we couldn't pin ourselves down to a date. So once again we resigned ourselves to waiting.

The next exciting thing after she nearly got better again and then worsened was that the weather turned really cold and she got croup. Now throughout the cold virus she'd been working harder than usual with her breathing. We've had croup before and managed, but croup on top of heart failure (which we remember is not when your heart stops, but when it is failing to some degree) is a tricky business.

Here she was, nearly better, I was about to ring back the Lady of the List and report that we were better, and instead she suddenly worsened to the point that I rushed her into hospital for help with breathing. She was coughing and spluttering and just couldn't get a good breath in. We stayed overnight and with the help of a dose of diuretics got better enough to go home again, with instructions to watch and come in again if she worsened.

While in there they had taken swabs of the mucous (lovely!) and tested it for usual viruses. All were negative. Having ruled out such viruses as RSV (which is a nasty cold that can turn into bronchiolitis in already sick children), the surgeon started talking about operating regardless of the cold she has, since she might not avoid sickness and wind up in ICU from the sickness. So they sent us home to await a call.

I thought she would get better now, since she'd been sick now three weeks, which is quite long enough for a cold. Still, she kept on with the runny nose and the noisy coughing. Once again, the following week we had to report in again, with a croupy cough combined with increased work of breathing (which is fancy talk for puffing and panting).

I had called the List Lady before I took her in to ask her advice and she made noises suggesting that if we were on the ward long enough we might make it onto the inpatient surgery list. Apparently there was no room on the list for this week so it would be at least next week or the week after before there was a spot. Happily for our immediate sanity, but sadly for the cause of getting the surgery done, they agreed with my suspicion that the heart needed support until the surgery and sent us home on a dose of diuretics.  Surgery hopes once again dashed!

So that was yesterday that we arrived home, and I decided to call up today to see what the lie of the land was for the next couple of weeks. The List Lady said that she'd see what the cardiologist thought about proceeding while she was unwell and she'd call me back today or tomorrow. She called me back within a couple of hours to check exactly what kind of cough Jacinta has, because there's a spot on the list for tomorrow and if the anaesthetist is happy to go ahead, she can have the surgery.

So all of a sudden we're all systems go! Straight to bed to get up again for a middle of the night feed, then fasting completely from 6am. Arrive at hospital at 7am and if they're all happy, surgery at 8am is my assumption. This afternoon has been a whirlwind of organising. We're keeping the family together tomorrow. After all these hospital admissions we've had over the last year it's cruel torture to expect any member of the family to be on their own while Jacinta's in surgery, especially since it's very much a known quantity and when you're 7, you have a definite opinion on what kind of support you think your sister needs.

The surgery will take longer than the last operation was originally supposed to take. Going over the scar tissue is a very delicate business so they take their time. Also finding veins is much harder the more you do it, so that can take a while. So they've told us to get out of the hospital. It'll basically be a work day that we have to kill, so we'll see how much fun we can get up to!

And as for feeling like I've got a million things to organise and we're forgetting stuff, and trying not to feel terrible about the operation etc. well, it's there of course. I'm making a conscious decision to chill. I'm going to bed, I'll wake myself up for a bit, go back to bed, try to get a decent amount of sleep, and carry on tomorrow. Let's see how we go! (And fingers X we don't get cancelled....)

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