Overwhelmed with enthusiasm for her return to school
Miss Z is back at school! It has been over a month since her surgery and today will (hopefully) be the first day that she is back at school normally – taking the bus and staying the whole day.
Even though her recovery was totally straightforward and did not involve any major dramas, I found it a challenge. This actually had very little to do with Miss Z, who has amazed me with her ability to bounce back after such major surgery. No, this was probably much more self-imposed.
First, I committed to returning to work too soon after Z came home from the hospital. Miss Z was sent home on a Thursday, and I was back at work on Monday. Working as a freelancer and from home, I’m acutely aware that if I’m not working, I’m not being paid. I also know that if I’m absent for too long, the client might decide that they can manage without me. With a chronically ill child, it is a difficult balance to maintain, between looking after Z and keeping up with my career. For me, it often leads to working odd hours (I’m generally most productive late at night) and in odd places (including at Z’s bedside in the Emergency Department).
I also think that bringing Z home post-surgery highlighted the increasing difficulty of moving and positioning her as she gets bigger and heavier. Particularly in the early days after Z came home, we only lifted her by hoisting. Fortunately, thanks to the extensive home modifications we did last year, this was possible. But anyone who has had to use a hoist for manual handling knows that it is time-consuming and that it isn’t always very easy. Trying to get a hoist sling in the right position underneath Z while she is lying on her back is difficult, and I often felt like I was causing her more pain by rolling her and pulling the sling than if I’d just lifted her myself.
Added to this is our ongoing transportation challenge. Miss Z is no longer safe to go in her carseat – she doesn’t fit properly and it would be dangerous for everyone if QB or I tried to lift her into the car ourselves. So, we’ve relied on Maxi Taxis, which is fine – or at least it is when they turn up on time and the taxi is clean and the driver knows how to secure Z’s wheelchair properly, and the air conditioning is working, and money is not a concern.
However, you can’t use a taxi to take Vegemite to school. Or to pop out for a few items from the grocery store. Or to pick up a package from the post office. Well, you probably can take a taxi for those things, but it isn’t really practical… So, this has meant that I’ve been unable to leave the house during the day, unless Miss Z had an appointment. Most weekdays we had one of Z’s carers come for a few hours in the afternoon, so I could run errands and get things at the shops, as well as ferrying Vegemite to all her after-school activities.
And finally, throw in the fact that Miss Z was waking several times a night, needing pain relief and repositioning. I’m no stranger to getting up at night to tend to Z, but the multiple times and for longer periods – as we waited for the meds to kick in – left me frazzled.
So, getting Miss Z back to school has been a huge relief. I’m once again able to do all those little things, like filling up the car, dropping off dry cleaning and shopping. I feel so efficient! And this morning I also started to book all those appointments that I’ve let slide while Z was recovering – hair, physio, dentist, etc.
Getting back to normal will be a much-needed breather.
Except…
The Orthopaedics team phoned me this afternoon to reschedule Miss Z’s next appointment. They needed to move it so it fit better ahead of Z’s surgery.
Wait, what? Didn’t she just HAVE surgery? Didn’t I just get her back to school after a month of recovery?
However, this is our new life. Growth rods mean that the rods grow with her. And the surgeons have decided that she needs them extended every four months. So, she’s due for her first rod extension in May.
The good news is that the surgery is much quicker and easier.
The bad news is that it will entail an overnight stay in the hospital.
And the even worse news is that we’ll be staying overnight in the “23-hour ward”. I’ve got no idea why it’s called that (maybe because you’re not intended to stay for a full 24-hours?), but it is an excruciating place to spend the night. It is all one long room with bed after bed (at least 20, probably more) full of children who have just had minor surgery, so they’re all miserable and noisy. The parents with the miserable children are mainly those who rarely, if ever, spend time in the hospital, so don’t have the hospital etiquette that those of us who are “frequent flyers” tend to have (and yes, I am biased against non frequent flyers). And the nurses aren’t used to dealing with complex care kids, so I’m usually up at all hours explaining how Z’s feed pump works or some other minor issue).
(In case you’re wondering, children’s hospital stay etiquette includes such basics as: don’t gawp at my child, don’t have long, loud conversations on the phone, don’t invite your whole extended family to visit late in the evening, don’t turn your bedside tv up as loud as it can go, silence your damn phone overnight, and do not expect the nursing staff to jump at your beck and call.)
New goal for 2019 – convince the Ortho team that Z doesn’t need to spend the night after rod extension surgery. We’ll get this first one under our belt and then I’m going to start lobbying.
In the meantime, I’m going to enjoy our breathing space… while it lasts.
oneofthewonders 