“I’ve got a great idea,” I said to Mr August in 2013. “Let’s gather all the things Happy Chin hates most in one place – loud noises and bright lights, needles, tubes and wires randomly inserted in or attached to him by people he doesn’t know, pain he doesn’t understand, little or no control over what’s going to happen next, bad food, uncomfortable beds and no access to a nearby fridge. Then let’s take him to spend three weeks there.”
No, I didn’t really say this, but I might as well have. Because we were going to hospital for a major operation on Happy Chin’s brain.
Any parent who’s ever been in hospital with a child knows exactly how stressful it is. We’d only ever been for MRIs, but these were conducted under general anaesthetic, usually involving one of us sitting on Happy Chin while the other pinned his legs down, the anaesthetist ducking and weaving like Muhammed Ali trying to get the cannula in. The bigger HC got, the harder it became to get him under, so the drug payload kept getting ramped up. One memorable MRI in Melbourne involved a Valium tablet taken upon waking, followed by a 10 minute walk across the park from apartment to the hospital, HC falling asleep on the concrete steps outside the waiting room, a quick trolley transfer, a Ketamine jab and some Midazolam in his IV line. By the time he was wheeled into MRI and actually given the GA he was completely comatose. After the procedure the doctors all stood round his bed going, “Geez, he’s a bit drowsy isn’t he? When will he wake up?”
But major neurosurgery was another thing altogether. This was an operation that would take 12 hours and would open his whole brain in an attempt to remove a large tuber on his right frontal lobe, which appeared to be the source of his seizures. EEG wires would be attached to the tuber and MRI tests conducted throughout the operation to make sure the surgeon got as much of the tuber as possible, along with any other smaller ones showing up on the scans. If successful, the operation could dramatically reduce HC’s seizures and give him a much better quality of life. However, it was carefully explained to us that even with the offending tubers gone, he might still experience seizures, as the brain had 18 years of deeply ingrained seizure patterns. We weren’t to hope for developmental changes, that ship had sailed for Happy Chin, we were told.
We decided to be optimistic. Even if we could eventually wean him off some of his anti-convulsants, surely that would be worth it for him? The side effects from these drugs were many and unpleasant.
How little we knew of what was to come in the weeks ahead, and how fortunate we didn’t know! I for one would never have had the courage to go ahead. If I had known, I also would have packed:
- Valium (because you can’t really go taking your child’s Valium in the hospital, it’s not a good look)
- Three weeks’ worth of home-cooked meals in takeaway containers
- My mother (she had sadly died seven years earlier, but boy she would’ve been handy to have! My sister did fly down from Queensland for five days which was brilliant, but more on that later)
- At least 25 dolphin and fish shaped helium party balloons
- Two of those big puffy jackets for us to wear (Happy Chin scratched the hell out of our arms during the first week while he was fighting whatever procedure it was he didn’t want)
- A really experienced psych nurse, preferable one with a good working knowledge of the Vulcan Nerve Pinch. We were actually assigned a psych nurse after the third day, as things had gotten pretty hairy by then, but Happy Chin promptly decided to settle down and the poor man just sat outside the room, waiting for something to happen and listening to music on his iPod
- The Wiggles (only for the first two or three days, to distract HC from ripping off his bandages. I reckon we might not have had to splint his arms to the bed if the Wiggles had been there)
- Bob the Builder (to repair all the bits of the hospital that HC broke)
- Bob the Bartender (for me and Mr A)
- A suitcase full of chocolates for the incredible nursing staff
In any event, to borrow a line from Marvin the Paranoid Android, the first three million years were the worst. Actually, it was more like three days, but time goes very slowly in hospital. Our brave boy had come through like a trouper, with a tuber the size of a plum removed that had been sparking off seizure activity every two minutes. Imagine living with that for 18 years! Every time you went to do or think something you’d be interrupted by brain noise, a kind of 24 hour insomnia. A Grand Central Station of the mind.
Once he was sufficiently awake, however, he reacted to the dressing on his head like I react to Tech Support’s rap music – take it off right now!! I don’t think I’ve ever seen a more confronting thing in my life than Happy Chin ripping a surgical dressing off his scalp 20 hours after major surgery to reveal a livid 10-inch scar running over his head from ear to ear. After a few attempts to replace it under combat conditions, and with sedation proving ineffective, we held an emergency in-room conference with nursing staff. They suggested the idea of forgoing the bandages and spraying the wound with OpSite, a kind of spray-on dressing. If we kept HC’s (and our) hands as clean as possible, then the wound would heal without infection. Which is exactly what happened.
Happy Chin’s next major objection was to the arterial IV line in his neck, which brings me to the second most confronting thing I’ve ever seen – HC yanking the line out of his jugular vein. Blood spurted everywhere. I slammed my fist on the emergency button and nurses came running. Mr A had nipped out for an hour’s sleep so I was on my own, and I remember just slumping to my knees on the hospital floor and sobbing, simultaneously trying to press on HC’s vein while he tried to bite my hand. (It was shortly after this that we were assigned the psych nurse)
The Paediatric Neurology nurses at Melbourne Children’s are some of the most flexible, unflappable, innovative and compassionate people I have ever met. At every stage they worked with us to create solutions, they were calm and they listened. They asked us our opinion, and were genuinely receptive to suggestions. We were forced to be extremely creative with Happy Chin’s care, some things (like an ECG) were just impossible, but even though he was without a doubt an extremely challenging patient, we never felt it was any bother to them. My hat was off to them three years ago and it remains off. I must remember to give them a pay rise when I’m in charge, as well as teachers.
On Day Three, poor Happy Chin’s face was so puffy from the surgery that his eyes swelled shut. This was not a high point for him. He couldn’t even watch his DVDs. My sister had arrived by Day Two, so we three played tag team by his bed, listening to music, singing, reading stories and gently rubbing his back.
But by Day Four and Five, his Happy Chin was back. No longer encumbered with bandages and drips, he was free to wander about the ward. Or off the ward, as my sister can attest. She had settled in for what she thought would be a quiet afternoon with HC, waving Mr A and I off to buy groceries and take a brief nap before the night shift.
Now, at Melbourne Children’s they have a thing called a Code Grey. This is for the highest level of emergency and basically summons a pack of burly security guards to deal with the danger. My sister had three Code Greys with Happy Chin that afternoon.
Turned out he’d discovered during his perambulations that there was a vending machine in the corridor outside the ward with coke in it. And anticipating a bed-bound HC, my sister had worn high-heeled boots that day. She had three fruitless sprints down the ward after him and three lots of explaining to security that he really wasn’t a danger, even though he was engaged in a full frontal assault on the vending machine trying to persuade it to give up its coke.
Nearly three years on, Happy Chin still has his zigzag scar as a reminder of that harrowing couple of weeks. When he looks back at photos of the trip he says “Bump head hospital ow!” I don’t think he understands what an ‘operation’ is. He thinks he bumped his head and woke up with an ‘Ow’ in hospital.
The first MRI scan (under GA) after neurosurgery was fairly fraught. By his level of agitation beforehand, I’m sure HC thought he was going to bump his head again while he was under and wake up splinted to the bed, with a 10 inch scar and tubes everywhere. He’s had three general anaesthetics since then, and the memory is slowly fading.
While we were in hospital I met a mother whose 16 year old son had a brain tumour. They’d been through four lots of neurosurgery in three years. The prognosis wasn’t good. I can’t even imagine what that must have been like. We feel very lucky to have our Happy Chin well and bouncing round the place, being weaned off so many medications that are no longer necessary. Despite the neurologist’s prediction (or perhaps because of it, Happy Chin doesn’t like being told he can’t do stuff), he has made some major developmental leaps, has improved language and communication skills and his aggressive behaviours are massively reduced.
We had to fight hard to get him this life changing operation and it was without doubt the hardest three weeks of my life. On several occasions we just broke down and cried together over what we had done to our boy. Even now, the sight of that scar can reduce us both to tears.
At one particularly low point I remember thinking, “This is much too hard. I can’t do this anymore, I’ve changed my mind.” But we got through it, and as a result I’m not much scared of tough things anymore.
In that spirit, I’ve decided to run in this year’s Point to Pinnacle race. It’s the world’s toughest half marathon – 21.4kms uphill.
Care to join me? After all, how hard can it be?