Saying good-bye to the RCH

IMG_4854The first time I set foot in a children’s hospital was when Lil Z was 5 days old. During my pregnancy, there had been questions over a potentially enlarged ventricle in her brain, so after she was born, we were referred for a head ultrasound. I clearly remember sitting in the waiting room and thinking two things:

1. Nothing was wrong with my beautiful newborn girl.

2. Children’s hospitals were horrific places, the stuff of parents’ worst nightmares.

Ironically, I was only half right. The ultrasound showed that the ventricles in her brain were not enlarged and we were sent home happy that Lil Z was fine. However, six months later, when things were no longer fine, I discovered that children’s hospitals are not horrific at all, but in fact safe havens for poorly children like Lil Z.

I remember less clearly the first time I set foot in the Royal Children’s Hospital in Brisbane. Lil Z and I had arrived by ambulance and as we pulled into the hospital, Lil Z began seizing again. I wasn’t paying any attention to where we were as they wheeled her into the ‘resus’ room. I do remember not crying until I spotted QB waiting for us (he arrived, from work, just ahead of the ambulance). I remember a very tall doctor standing beside QB and me and explaining what was happening and what the doctors and nurses were doing. I remember the tension in the room rising when Lil Z stopped breathing. I remember sitting in the waiting room with our nanny while they intubated Lil Z – QB stayed with her and I know now that he didn’t want to leave because he thought she was going to die. I remember the Emergency Department nurse who looked after Lil Z and accompanied us up to the CT scan and then PICU. I also remember thinking that it wasn’t at all like Grey’s Anatomy – no one was shouting or running (or giving each other meaningful looks), it was all calm, calculated and extremely well-organised.

That was just our first experience of countless trips to the RCH. As the extent of Lil Z’s needs began to unfold, we built Team Z from the doctors and therapists based there. Not only were we regular visitors to the Department of Emergency Medicine (aka ER for the Americans or A&E for the Brits), but we had regular outpatient appointments and therapy sessions. I learned the best places for parking and how to navigate the rabbit warren of hallways, wards and departments. I learned that hot chips were the best thing to buy at the cafe and that ordering a coffee takes forever. Oh and those cute foil balloons in the corner require a second mortgage to purchase.

Yesterday, Lil Z had her annual ophthalmology appointment. Barring any unexpected emergencies in the next two weeks, that was our last ever visit to the RCH. At the end of November, the Royal Children’s Hospital closes its doors and merges with the Mater Children’s Hospital, to create the Lady Cilento Children’s Hospital.

The LCCH is meant to be bigger and better, with modern, state-of-the-art facilities and so on. I’ve only seen the building online, so I can’t judge (yet). However, I feel a real sadness for the closure of the RCH.

This is probably because after 3 years of regular visits to the RCH, I feel safe here with Lil Z. I know my way around. And most importantly, I know people and they know Lil Z. This is important to us.

The last time Lil Z broke her leg, I took her to DEM and ended up arguing with some junior doctors about what was wrong with her. Because Lil Z reacts differently to pain than most people, they didn’t think she had a fracture, but had a number of other possible diagnoses – everything from wind to a UTI to a shoulder strain. I was fairly unsuccessful at convincing them to do an X-ray first, when Dr. Kate appeared. Dr. Kate has seen Lil Z numerous times in the DEM – including looking after her when she had her first fracture – and immediately called for an X-ray, which revealed a fractured tibia.

Similarly, Dr. Ben in DEM has seen Lil Z several times and has been involved at least twice in stopping her seizures and helping her breathe. He knows her and that makes me feel safe.

Lil Z’s first OT and physio were at the RCH. She usually did very little except scream and cry through the sessions. But the support and advice the therapists gave to me during those early days was invaluable. I’m not sure how I could have made it through such a tough time without them.

Lil Z and I were waiting in X-ray the other day when a nurse walked by and recognised Z. She’d looked after us over a year ago, when Lil Z was having eating issues, and still remembered her. We had a long chat about how much Lil Z has grown, how Vegemite is doing at school, and the difference that a feeding tube has made to the quality of Lil Z’s life.

The occupational therapy team at the RCH has been a huge help – including making Lil Z protective neoprene gloves (cutting them out and sewing them by hand) during periods when she is fixated on biting or rubbing her fingers.

And we even have allies in the finance department, where one of the managers has helped us navigate the Australian Medicare system and the inexplicable intricacies and frustrations of private health insurance.

And it’s not just me. I won’t claim that Lil Z feels any affection for the RCH (and who would blame her), but her sister most definitely does. The Wonder Factory has been a life-saver for us over the years – a place where Vegemite can play while we talk to doctors or simply sit with Lil Z. To this day, Vegemite associates her sister going to hospital with playing at the Wonder Factory and eating hot chips for lunch – much better than the anxiety or boredom she could associate it with. The fact the Wonder Factory won’t exist at the LCCH has been a huge disappointment for us.

All of Lil Z’s doctors will be moving across to the LCCH, and I’m sure most of the nurses and staff will be as well. I’ve no doubt that soon I will have just as many stories about the kindness and understanding of staff at the new hospital as I have at the RCH. But right now I don’t want to go through figuring out how to get to the outpatients department, how long it takes to get a coffee at the cafe, or where the disabled parking is located. I want the familiar, the known, the RCH.

It’s no longer my nightmare, it is my safety net.

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