Downs With Ups

“Jane,” I said, exasperated. “Please answer Grannan.” Jane wasn’t going to though; she just sat there with a blank look on her face.

It was Sunday night and we’d just watched Peter Rabbit 2, after dinner. Halfway through the movie, Jane left her seat to go and sit in front of the heater. It was a perfectly normal evening, even for lockdown.

Mum had been asking Jane about her day the next day. Even with prompting, Jane wasn’t going to answer.

“Come on love, who will you be seeing tomorrow?”  Mum tried again.

Jane has spent the past 18 months attending a school leavers program with the same three people; there’s no way she could have forgotten their names. I thought Jane was being obstinate as she sometimes becomes when she’s tired.

I was now irritated. “Come on then, let’s go home.”

“Bye Grannan,” Jane said as we walked out the door.

As we drove home, I asked her again, “Who will you be seeing tomorrow, Jane?” Again, she looked at me blankly. I pulled over on the side of the road.

“Come on. I know you know their names.” Nothing.

“Okay then. What’s my name?”

I could see she was trying to say something, but words didn’t leave her mouth.

Even though it was past the lockdown curfew, I checked my mirrors. There wasn’t a single car on the road. Turning the car around, I headed off to Maroondah Hospital. Something wasn’t right and I suspected it was something out of the ordinary.

“Louise, aren’t you supposed to be knocking off?” asked one of the triage nurses.  Louise was taking Jane’s temperature. “Yeah, I’ll just make sure this young lady gets a bed first,” Louise replied as she removed the gadget from Jane’s ear. I was relieved to hear this because I didn’t want to wait in the potentially covid-infested waiting room, and I wanted Jane to be seen as soon as possible.

Moments later Jane was ensconced in a bed in the emergency ward. I’d been ready to put up an argument if the hospital staff were going to prevent me from being with her, thanks to the covid requirements. Fortunately though, I was able to stay with her as her carer.

We spent the night watching the various comings and goings of the ward. At one time, there were six police officers and six nurses looking after this one chap opposite Jane’s bed – he’d taken something and was off his head. No-one was able to communicate with him though for he was deaf. This created significant tension and he was throwing things around in frustration. At one point I thought he was going to lunge out at us, so I stood up in front of Jane’s bed.

“Would you like me to close the curtains?” asked a nurse.

“No thanks. I like to see threats if they’re coming at me,” I replied. She nodded soberly.

Jane was taken away around 2.00 am for an MRI, which is a harmless scanner but it’s big and as noisy as all get out. Jane had an MRI on her ankle several years ago at the Royal Children’s Hospital and they had movies to watch during the procedure.

This time there was no such option, and she was petrified. Once we’d managed to get her onto the narrow plank-like mattress, Jane wasn’t going to let go of my hand, even after I put her laminated photo of Keith Urban on her tummy for reassurance. The radiologist let me stay and gave me headphones to wear. My arm moved into the circular chamber with her and spent 45 minutes beside Keith as the MRI buzzed and whirred loudly doing its thing.

Hungry, sleep deprived and anxious, I sent the following text to family and friends at 8.47 am.

Hi there. I hope you are coping with lockdown. I haven’t been in touch because I’ve been looking after Mum who was in hospital for a week and two weeks convalescing. I thought you might be interested to know that I’m with Jane at the Maroondah Hospital having come here last night. Jane has had a stroke. We’re yet to see the neurology team to fully understand what has happened exactly and what impact it has had on her, but I’ll be in touch as soon as I know more.

And a little later, I sent this text as a reply to the understandable messages of concern I received.

Yeah it’s a shock. It broke my heart when she didn’t know my name. She’s sleeping fitfully and on a drip because they’re concerned about her ability to swallow. She was to be assessed this afternoon, but we probably won’t be here. A doctor mentioned that her stroke is something like one in a million – it’s called moyamoya. I’ve talked with the neurologist who told me this is critical, and it was a large area. He wants us to go to St Vincents because they have the facilities to operate if they can or at least observe any changes at this stage. On the plus side he said she has a young brain. Due to covid only I can be with her at this stage, which is a shitty thing, but I understand. I’ll keep you updated when there’s something to say.

While I was too distraught to Google it at the time, I eventually looked it up. Moyamoya is a progressive disease that usually affects women from East Asia. The name ‘moyamoya’ is Japanese and means ‘puff of smoke’ because that’s what it looks like in brain scans. The ‘smoke’ being the tangle of many, many tiny blood vessels that have formed to compensate for blocked, (carotid) arteries in the base of the brain.

According to Moyamoya Australia, if an individual has moyamoya, it is likely they will experience mental decline and multiple further stokes and, as a result of internal cerebral haemorrhage, it can be fatal.

So, why does Jane have moyamoya? Well, according to the Global Down Syndrome Foundation, people who have Down syndrome are 26 times more likely than the regular population, to develop moyamoya due to other vascular issues associated with the syndrome.

So here we are – at the beginning of a medical adventure of sorts and a novelty for the medical profession.  More to come…