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Monthly Archives: July 2015

Say my name say my name…

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There are many strange things about being a parent in hospital with a sick child, but the strangest is this: you get more kids.

So many people – medical professionals I’ve never met before – call me “Mum” now that I live at The Children’s Hospital, Westmead. I feel like some sort of super-fertile Duggar with a scrubs-clad insta-family. Wouldn’t their mums be offended if they heard these people calling me “Mum”? Is it that hard to stick out your hand, say your name, wait for me to tell you mine, and then use it?

You find La in not-best humour. I told a registrar this morning that “We will not be continuing this conversation.” (I know! Can you believe it? I said that to a DOCTOR!!!) I marched up to the driver-side window of a man who honked his horn in the enclosed car park — scaring me so thoroughy I almost needed some of the sick female Junior Cost Centre (JCC’s) nerve drugs and an adult nappy — and shouted, “Pull your head in…it’s a HOSPITAL!”

For light relief I abscond to linen closets to watch Amy Schumer. A trip to Westfield Parramatta yesterday bore fruit: a muscle-melting Chinese massage and DVDs of seasons one and two of Masters of Sex. That Michael Sheen is srs thinking woman’s crumpet; so very much unresolved sexual tension in one medical body.

None of that going on here, though:we’re all business. The little girl is very unwell and faces a long road to recovery. Goals include managing to walk more than 10 metres unassisted, sitting upright for longer than half an hour, dressing herself, and remembering my and Seriousimo’s phone numbers, which she used to be able to reel off at lightning speed.

Her Amplifed Musculoskeletal Pain Syndrome (AMPS — diagnosed last Thursday by Dr Jeffrey “Great”ow) requires an intense regime of nerve medication, physio and hydrotherapy. So you’ll find us here, she and me, in our six-bed room for at least the next couple of weeks.

Yep, what we gain in medical expertise and treatment we most certainly sacrifice in privacy. JCC had to hear the troubled young teen a few beds over regaling her social worker with tales of how her father calls her “fat and a c***”. The responsible allied health professional in the picture should have taken that conversation to a room with a door.

The tiny Spidermen, fairies and Batmen I pass in the vast atrium make me feel like a lumbering Gulliver. They bounce along in beanies with their IV poles and naso-gastric tubes, singing Pixar songs. So many tiny superheroes waging war against unspeakable f*cking illnesses, flanked by worried parents in abayas, rats tails, neck tatts, stilettos, hijabs, suits and ties. That’s the thing about illness — it doesn’t discriminate, it’s blind to all the distinctions we’re often unable to see past.

And me? We’ll I’m no-one’s muse right now. My grooming extends to a daily wash, my nutrition needs are met by Starbucks Mocha Frappuccinos (the “S” word, I know…but needs must, people, needs must) and my only nod to fashion is making sure I’ve sponged the food stains off my favourite red fleece each morning. I know — who are you and what have you done with La Triv?!?

Leaning in

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My back’s sore. Scrunching, plastic-covered mattresses on pull-out beds are not conducive to fresh-as-a-daisy sleep. I’m weighing up the grim reality of the shared parents’ shower against languishing in my clammy, personal hygiene-free zone for a few more minutes. Maybe longer.

I’m at The Children’s Hospital, Westmead, with a sick daughter. I’ve tried to tell her that she’s “sore, not sick”, but she’s 10, can’t walk, can’t go in a car, feels constant nausea. Her pretty little face is pale with pain. The “re-framing” that’s the bread and butter of my professional life isn’t washing this particular issue away.

Seven weeks ago, on a Sunday, she complained of a “sore tummy”. I told her she’d be right. Her father gave her a Buscopan, asked lots of kindly questions and cuddled her. 

The next day her lunchbox came home untouched. And the next day, we went to RPA, and the whiplash-inducing ricocheting between emergency rooms, adolescent wards, infectious wards, waiting rooms, post-op recovery wards, specialist centres and ambulances began. 

Her slight body has offered up eight sets of blood work and three urine and faecal tests. It’s posed patiently for a CT scan, an MRI, an abdominal x-ray. And it has lay prone for a gastroscopy, four ultrasounds and a colonoscopy. 

And you’ve guessed by now where this is going: right now, some of the best paediatric medical minds in Australia don’t have a blind clue what’s wrong with her. 

They do know she has coeliac disease. Investigate anyone that many times from mouth to anus and you’ll find something. It’s just a shame for her that “something” ended up meaning no cake (real cake) for the rest of her life. 

But in the grand scheme of all the things that are shames right now, that’s the least of them. 

The larger ones are: the pain. Oh, and did I mention the pain? And the surgeon who – carelessly, within her earshot – told us, “We’re seeing this abdominal thing more and more in bright, high-achieving teen and pre-teen girls.” What the..?!? In other words, I can’t find the cause, so to save my medical face, my diagnosis is that she’s making it up.

We broke up with him. 

We’ve got big love though; we’re polygamous with many others, always hopeful that the next specialist — the next brainbox we’re sent to, or who walks through the ward door — will be the one to fix it, crack the code, find the silver bullet, blow us away with his or her brilliant diagnostic mind.

A tall, motherly young doctor with red hair and pale skin treated her last night. She was from Ireland. She reminded me of a girl I went to school with, someone I thought was the very best of people, and I told the doctor so. I also told her she was beautiful and then I cried. She responded, “Oh, bless you…we’ll keep you!”

I’m grateful for acts of kindness like that: people “checking in” (and I don’t mean in the Facebook sense), friends bringing presents for my daughter, offering us meals and to take care of my son. Many of these friends face significant challenges of their own. Though, who in middle age doesn’t?  

Each time someone asks how we’re going, I respond in one of three ways. I deliver the latest “news review”, a succinctly edited verbal digest of the symptoms, treatments and next steps. Or I tell them I don’t really want to talk about it. Or I cry. The point at which a compassionate inquiry intersects with an image of her pain-creased face and the dull torture of not knowing is most often a teary one.

I’m grateful too for flashes of my little girl of old. A quirky observation about a fellow patient’s shoes. A jocular re-telling of a wisecrack from her beloved (former) Top Gear hosts. A flash of energy big enough to make her want to grab her dog’s front paws and pull him upright for a dance. 

There are things I hate. Being called “Mum” by medical professionals who are not my children. Sleeping next to snoring strangers. The smell of other people’s babies’ shitty nappies being changed two metres from my head. The interminable waiting — for appointments, results, consultants to visit the bedside. Us delivering the symptoms synopsis, again and again. The drugs treating symptoms and not a cause — because the cause, whatever it is, is all bushel and no light. The drugs we say yes to in desperation, even though the thought of them going into a 10-year-old’s body scares us witless. Her plaintive sobs, angry railing, jarring yelps from pain. The helpless, helpless feeling of being the parent of an unwell child.  My irrational anger, always white hot, often misdirected, sometimes blinding.

There’s always someone doing it tougher, I tell myself. I’m not sure we “deserve” to be here. Kids’ hospitals are places of great energy – the life force of children, even sick ones, is almost palpable here – but they are places too of unspeakable sadness. A sweet girl opposite my daughter in a previous ward — gamely studying for her HSC — evidently had breathing problems.  Turns out she has cystic fibrosis and a life expectancy of 38 at best. And we’ve seen even worse than that. 

Australia’s treasurer, like many of his colleagues in government, sees the world in black and white. “Lifters” and “leaners”. One lot are good, one lot are bad. Such dichotomies ignore life’s inevitable and essential shades of grey. They make us think it’s good to soldier on alone, bad to ask for help. They make people who find themselves needing to lean – on family, friends, employers, ambulances, the public and private health systems – question their right to be at an angle, asking someone else to help take their weight.

We’re in a leaning phase right now. We don’t know how long it will last. We don’t know what made it happen. We don’t know much at all. But at the end of the day the only black and white that matters is “sick” and “well”. And hopefully we’re leaning towards the latter.