Tuberous Sclerosis Australia Reach Out Magazine October 2016

Personal Stories
Personal Stories
Bump head hospital ow!
Liam’s epilepsy surgery
Selina Spowat. Selina writes about her family
at www.happychinblog.wordpress.com
’ve got a great idea,” I said to my husband in 2013.
“I“Let’s gather all the things Liam 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
Liam’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 Liam while the other pinned
his legs down, the anaesthetist ducking and weaving like
Muhammed Ali trying to get the cannula in. The bigger Liam
got, the harder it became to get him under, so the drug payload
kept getting ramped up.
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
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 Liam’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 Liam, 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 (Liam 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, preferably 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 Liam 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
Liam 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 he broke)
• Bob the Bartender (for me and my husband)
• 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 trooper, 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.
The first three days post-surgery included Liam ripping his
surgical dressing off, pulling out his arterial IV line and being
so puffy his eyes swelled shut. But by day four and five, Liam
was back. No longer encumbered with bandages and drips, he
was free to wander about the ward.
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 Liam’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.
Nearly three years on, Liam 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 general anaesthetic) after
neurosurgery was fairly fraught. By his level of agitation
beforehand, I’m sure Liam 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 Liam 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,
Liam 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.
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OCTOBER 2016 ISSUE 104
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