We are a family that live by the calendar. There may be only four of us… five counting the au pair… and well, six if you include Ben, who has his own share of schedule-able events… but we seem to spend our lives going in different directions. I’ve tried keeping track of all our appointments, lessons, sessions, classes and other responsibilities in a range of ways, but what works best for me is a good old-fashioned calendar. If it isn’t written on the calendar, then it doesn’t exist.
The calendar records all of Lil Z’s therapy sessions and medical appointments – there are a lot of them, all at varying times, so there is no way that I could remember them all any other way.
All her therapists book her sessions by the ‘term’ (which coincides pretty much with school terms). Before the term begins, the therapists have a chat with me about the best days and times for Lil Z’s appointments. Then, we receive a list of appointment dates and times. I can record them all on the calendar at once and we can schedule around them. It makes life easy.
If only medical appointments were that easy.
Apart from her GP, all of Lil Z’s doctors and specialists are based at the new Lady Cilento Children’s Hospital here in Brisbane. The new hospital isn’t nearly as convenient or as close for us as the old Royal Children’s Hospital, but as I know people who have to fly to Brisbane to see specialists at the hospital, I won’t complain about the extra 10-15 minutes it takes me to drive across the city…
I also won’t launch into a rant about all the things that are wrong with the new children’s hospital. It is new and they are still ‘de-snagging’ all the little problems, so it isn’t really fair to complain… yet.
However, I will complain about our appointments because at the moment, they dominate our lives. Last week we saw the paediatrician. This week we saw the dietician. Next week we see the Neurologist on Wednesday and the Orthopedic Spinal Clinic on Thursday.
There is no coordination between departments to try to get two appointments on the same day. And there is NO flexibility on the day or the time. If you can’t make your assigned appointment, then you go to the back of the list and usually have to wait another 3-4 months for a new date. This isn’t so bad for things such as Lil Z’s annual ophthalmology appointment, where they are just monitoring the health of her eyes, but it is a big deal for other appointments, where they will be following up on medical issues and adjusting medications.
So, hospital appointments take precedence over everything else, which is fine because they are important. But then the timing catches us out. Several of Lil Z’s recent appointments have been at 8.30am – the same time I’m meant to be dropping her big sister off at school. And, incidentally, the same time the roads between our house and the hospital are solidly packed for the morning rush hour. And next week, the Ortho appointment is at 3pm, which is when I’m meant to be picking Vegemite up from school. Not particularly convenient scheduling.
So, I have to pay to put Vegemite into before or after-school care on those days. Yes, I’m lucky enough to have an au pair, but we only have one car, so even an extra set of hands doesn’t help…
And while we’re talking about paying, lets talk about the cost of parking at the hospital. We had a relatively swift appointment with the dietician today and were only at the hospital for an hour. Parking cost $17. It is usually even higher than that because none of the others run on time, so we are always at the hospital for a minimum of two hours. According to my rough calculations, by the end of next week, I will have spent $350 so far this year, simply in dealing with the logistics of getting Lil Z to and from hospital appointments.
At the end of the day, none of this really matters because we want the best care possible for Lil Z, and if that inconveniences us, then it is a small price to pay. But at the same time, it can be hugely disruptive for our family. It means that Vegemite gets juggled around. It means I lose yet more time off work. I’m not sure I would be able to cope with missing so much if I wasn’t self-employed, but being self-employed means that if I’m at the hospital, I’m not working and therefore not getting paid. And it means we’re spending money on parking, out-of-hours school care, and taxis, which could be better spent on equipment and therapy for Lil Z.
It’s frustrating because it seems like there really should be a better way. I know that most of the people using the children’s hospital aren’t there as frequently as we are. I know that if everyone got a say in scheduling their appointment, it would be chaos. But surely there is a better way to make it easier for kids like Lil Z with complex medical needs. Surely that can be taken into consideration?
It would certainly make my life easier. And my calendar tidier.