Nuclear

Example photo of a SPECT scan

Today was just the average kind of Monday. You know, one of those where you catch a train to take your kid down to London to have radioactive dye injected into her. That sort.

Yes, today was the much-anticipated SPECT scan. (I know it sounds like a truncated version of the latest James Bond film - even more so when the section of the hospital it’s taking place in is called ‘nuclear medicine’) but SPECT stands for Single-Photon Emission Computed Tomography. 

It’s a very particular and specialist kind of scan (yeah, I know, you can tell I’m not totally up on the science), and she was having it to try to establish the cause of pain she’s been having in her back. Just before Christmas, doctors were due to operate on my daughter’s spine and remove her titanium rods (inserted during a spinal fusion operation seven years ago), because they believed the metal was pressing on her nerves. But right at the last minute, they changed their minds and decided she should have this scan before any decisions about surgery should take place. This was the genesis of today’s strange adventure. 

At midday, we reported to University College Hospital, London, for her to have the dye injected. The syringe came in a futuristic-looking pod, presumably designed not to break and spill dangerous Hulk-creating gamma rays if dropped. I expected it to be green, or at least to glow, but the dye was disappointingly indistinguishable from the water they injected with it to flush it into her bloodstream.

My daughter, of course, was blasé about the needle. What was causing the persistent, overriding worry today (and there is usually a persistent, overriding worry), was the instruction to report back to the hospital three hours later for the actual scan, having drunk ‘around two pints’ of fluids in the meantime. 

I bunged her a couple of tomato juices and a cup of tea along with her less than 500 calories ‘leggero’ pizza lunch at Pizza Express, then insisted she take a sip of a drink every time she played a card in our after-dinner game of Top Trumps at a café near the hospital. All the while she was fretting: concerned she’d not drunk enough, and then anxious about having drunk too much. It didn’t help that she had no clue whatsoever about how big a pint was, despite my repeated attempts to impart my expert knowledge about the quantity of this particular measurement of liquid. At least she was allowed to go to the loo, because if bladder control had been added to the equation, we both might have had some sort of breakdown.

So it was that we returned to the hospital, lightly frazzled, and ready for the fray.

The chap who dealt with her was lovely. He talked her through what was going to happen, and helped get her comfortable, lying her down on a flat stretcher-like bed in front of what I can only inadequately describe as a ‘giant photocopier in the shape of a sideways claw thing’.

And here was where she came into her own. She had her feet tied together, a strap put across her stomach to hold her arms against her side, and she had to lie still for 17 minutes, whilst the camera slowly scanned her up and down, just millimetres from her face. Then after a quick readjustment of her position and the machine’s ‘camera claw’, she had to do the same again.

My girl, my little bundle of anxieties, completed the task perfectly. She didn’t move a muscle for each 17-minute pass. I praised her all the way home on the train. This was in amongst a word for word, worry for worry repeat of the drink shenanigans (she'd been told to imbibe another two pints after the scan, which meant that there were at least 20 people in our train carriage treated to a practical demonstration of just how many times a teenager with Prader-Willi Syndrome can repeat themselves in a 50-minute journey). 

On Friday we see her consultant at the Royal Orthopaedic Hospital in Stanmore. Whether he’ll actually have seen the scan from UCLH before then is another matter. I’m going be persistently pestering his secretary on the phone between now and then to try to convince them that this is a sensible idea. Wish me luck.

Had to pick a Bowie track today, after the sad news of his passing. I’ve gone for New Killer Star. (‘Nuclear’, you see). 

Removal

I put the phone down, and sat down. If I’d have had any brandy in the house, I would have necked one, despite me knowing that it would be bad to have booze breath on the school run.

The hospital had called with an operation date. The three month waiting list turned out to be a bit of an overestimation, and a cancellation has bumped my daughter up the queue.

The metal in her spine is being removed (I don’t know what titanium fetches at the scrap yard, but the NHS needs all the funds it can get). The titanium rods and bolts that were fused to her spine seven years ago, providing the scaffolding for the bendy bones to knit around and straighten up, are coming out. The nerve pain they’ve been causing should disappear along with them. And her posture shouldn’t be affected - the rods did their job a long time ago and are basically redundant. I feel like I should send them for re-training and give them help with writing their CV.

It’s December 11.  

I’m calm. I am.

I’m not.

Song is Patty Griffin - Hurt A Little While

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Snakes

We drove back from the hospital. A theatre emergency had called my daughter’s consultant out of his clinic, which meant that an appointment and X-ray that should have taken around one hour ended up taking four. But we were on our way home.

My girl chatted away, asking her usual litany of questions, which I did my best to answer, although my mind was racing. I’d just been told something unexpected and frightening. She’s got to have another operation.

It was there again: that low-level panic I remember from before. It sat in my stomach like a sleeping snake, ready at any moment to unfurl and slide up and squeeze me by the throat. 

She, on the other hand, was happy. “Dr Gavin said that if ever there was anything wrong later my metal rods might have to come out of my back, didn’t he?” she reminded me, recalling, pretty much word for word, a conversation she’d had seven years ago.

“You’re right,” I answered, keeping my voice neutral and calm. Putting my game face on.

When my daughter was 10, she had a spinal fusion. Titanium rods were bolted into her back to help straighten, anchor, and fuse her spine, which had been bent by scoliosis into the shape of a C. We spent an unbearable, unthinkable day in a hospital room waiting to hear if her if her operation was a success. The risks were terrifying: fractions of millimetres were involved, and if something went wrong, paralysis was a possibility. But the surgeon came out of theatre, sweaty and exhausted, and smiled, and the relief, the relief, the relief.

So now we face a repeat. Like a one-off Christmas special after that Bafta-winning drama of seven years ago. The metalwork needs removing. She’s been having pain for about a year, very occasionally at first, more frequently in recent months. The high pain threshold from her Prader-Willi Syndrome means that if my daughter says something hurts, the chances are anyone else would be in agony - so we got it checked out. And after months of infuriating delays and clinic cancellations yesterday we finally got our answer. Her CT scan results revealed the bolts at the top of her spine are pressing on nerves, which is causing the pain across her shoulders. They need to come out.

“Will my back be bendy again?” my girl asked. She was wide-eyed, not with snake belly panic like me, but with excitement, partly because she’d just watched a Topsy & Tim episode where Topsy had her appendix out, but mainly because she kind of likes hospitals.

“No,” her specialist explained. “The spine fuses after the operation, so it’s already set. The bone is straight and the metal isn’t actually doing anything now, so no, your back won’t be bendy if we take it out.”

She nodded, satisfied. “Will I get lots of presents when I'm in hospital?” The girl can prioritise, I’ll give her that.

It’s a two hour op, not a seven hour one like when the rods were inserted. The waiting list is about three months (although I’ll believe that when I see it). She’ll have to have six weeks off school.

I’ve calmed down a bit. We can do this. When I say ‘we’, it’s me and her dad I’m trying to give a pep talk to, because I already know she can do it. We deal with things the best we can in her determined, amazing wake.

I’m letting sleeping snakes like, for now.

Song is Etta James - Crawlin' King Snake

Photograph

She’s a lot scruffier in the picture on the left. Her collar was crinkled. The plastic, moulded body brace that encased her torso for so many years is hidden, but I recognise the awkward way it made her clothes bunch up, giving her that American-footballer-bulked-up-shoulder-pad look. You might be forgiven for thinking the haircut was homemade (it wasn’t, but upon reflection, I might be going back to see if the hairdresser will give refunds ten years later). I like her expression. It’s a bit timid, but she’s happy. I remember her being very excited when she came home with the school photo order form. My daughter’s first school photo. Copious copies were ordered. 

She’s impossibly grown-up in the new one. Although she is wearing a borrowed tie, because, of course, on school photograph day, she lost hers. There’s some metalwork you can see (the braces on her teeth), and some you can’t (the titanium rods that have straightened her scoliosis-bent spine). She looks still, and poised. It’s a bit misleading, because she’s still the same head-bobbing, funny-walking, flappy-handed, lolloper.

Two things strike me.  Firstly: bloody hell, that’s a good gig isn’t it, getting the contract to do the school pics? Are there School Photo territory battles, like the Glasgow Ice Cream Wars? If a new firm comes to town, are they sent a threatening photo through the post, with the letters made up of tiny, cut up passport-sized specimen pics of smiling kids in their best jumpers, spelling out: “PITCH FOR MY PLAYGROUND PATCH AGAIN, PAL, AND I’LL SHOW YOU A NEW PLACE TO FIT YOUR FLASHGUN"?

The second thing? My girl has come a long way in a decade. We all have. 

Song is World Party - Photograph

Houdini

My daughter used to wear a cast covering her torso. She had a series of moulded, rigid body braces, which attempted to slow down the curvature of her spine.

But the scoliosis got to the stage when it could be alleviated no longer, and the huge spinal op that doctors had been putting off finally went ahead. The cast was replaced by some titanium scaffolding inside, and the body armour was thrown on the scrapheap.

But she was encased, night and day, for nearly a decade. 

Sometimes I feel constricted, too. Having a daughter with a disability that you cannot change, a condition you cannot cure, a hunger you cannot satisfy, is a different kind of straitjacket. You can battle, and struggle, and fight, and the straps only tighten. It's not always easy to breathe.

But sometimes I escape. When she achieves things I never thought possible, when she surprises me with her thoughtfulness or humour, and when she is purely, uncomplicatedly happy, I can feel the clasps unlocking and the straps loosening.

She’s in a school production at the end of the week. She’s helped me do a Houdini again.

Video is The Kinks - Set Me Free


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Email

My daughter was on a mission this afternoon.

Earlier, she'd asked me to charge up her iPod touch, and now she was appearing at the doorway every few minutes with a spelling query, so I'd already guessed she was emailing someone.

When she asked me how to spell 'operation', I twigged what she was up to.

It took her about half an hour. When she announced, loudly, that she had finished, I called her into the bathroom, where I was bathing her brother, dodging handfuls of soap bubbles and telling him that if he peed one more time in the bath it would actually have more wee than water in it.

She stood at the door, pushed her glasses up from the bottom of her nose, cleared her throat, and read this out.

It's an email to a friend of mine who told us recently that her son, George, might have to have the same spinal fusion operation that my girl had.

I love that she's put 'Operation' as the subject header.
I love that she's somehow managed to change the date to 1970.
I love that she's felt it necessary to point out that the operation made her wet the bed.
I love that she's told him she cried. The op was tough - she's not glossing over this.
I love that she simply cannot write this without referring to at least one mealtime.
I love that she remembers exactly what books I bought her.
I love that she's thought to tack on a bit about 'fill'ing better.
I love every phonetically and not-so-phonetically spelt word.

Most of all, I love that she wanted to send this in the first place.

Video is The Pretenders - Message Of Love


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'Oops

'Oops

Three years ago, my daughter had an operation.

It was just the small matter of ratcheting her scoliosis-twisted spine straight, and drilling in and bolting titanium rods millimetres from her spinal cord so her bones could fuse around the metal (see previous post Straight).

It was just the most agonising day of my life as she was wheeled into surgery that could potentially have left her paralysed. 

It was just seeing her in the recovery room, her cheeks and chin distorted from having been operated on face-down for seven hours, and hardly recognising her.

It was just coping with a few terrifying, helpless, morphine-fuelled days of recovery afterwards before she finally returned to any semblance of her old self. (See previous post Phantom).

A few months later - during which time I had popped out her baby brother - my girl had to have a second op.

This was to stick some more scaffolding onto the bottom few vertebrae, and this one was a lot less traumatic.

It only took two and a bit hours. And when we saw her come round in the High Dependency Unit, she gave us a little smile.

The following morning, the consultant on duty was doing his checks. To appreciate what happened next, you have to bear in mind that most children who have a spinal fusion operation (or adults for that matter) feel like they’ve been flattened by a tsunami after this surgery. But Prader-Willi Syndrome, as well as coming with an insatiable appetite, also features a high pain threshold - which in this case was definitely a good thing.

“I don't suppose she's managed any breakfast?” the doctor asked, expecting an answer along the lines of: “No, she’s not felt up to eating anything yet.”

There followed a small pause, then she looked at me, as if she was asking permission to speak.

I nodded, encouraging her. She smiled, shyly, and looked up at him. “Yes!” she said. “I had 'oops."

He looked amazed. But his eyebrows raised a whole inch higher when she added: "And I had tuna bake for tea yesterday. That was LOVELY.”

Video is clip from Life On Mars - "I'm 'avin' 'oops".

Video is David Bowie - Life On Mars

Phantom

We came home from the hospital four days after my daughter’s first spinal fusion operation.

It was major surgery, to correct a dangerous curvature of the spine. It was a draining, nerve-wracking, terrifying, experience for us as parents, and a painful and confusing one for her as the patient. 

Now we were back at home, all of us still shell-shocked. She was morphined up. Sore, spaced out, and sorry for herself.

And there was one extra problem. Someone who has Prader-Willi Syndrome doesn’t physically feel full up. So the main way to deal with this - the only way to deal with this - is by distraction. 

But in her delicate state, it didn’t work.

She couldn’t concentrate enough to read, or play on her Nintendo DS. She was uncomfortable staying in one position long enough to do anything. In her drug-addled, confused state, her brain latched onto the one thing we never want it to: the fact she was HUNGRY.

At one point, she did a slow motion, shuffling, Day of The Dead zombie walk from her bed downstairs to the dining table.

“It’s dinnertime,” she said, her eyes shining out from her terribly pale and strained-looking face, gazing straight through me.

“No, you’ve only just had your dinner, sweetheart. It’s not time for food yet,” I told her.

“Yes. YES!” she replied. 

And then she picked up a knife and fork, carefully starting cutting her meal into bite-sized chunks, and tucked in, making appreciative “mmms”. Not stopping until she’d eaten every last scrap.

There was no dinner in front of her. No plate, no knife, no cutlery. She’d conjured it up in her head. I’d just watched her eat a phantom meal.

I was at my wit’s end. What the hell were we going to do? She needed to rest, but she kept getting up to “eat”. I’ve never felt so helpless in my life.

Then, the very next day, she picked up a book for the first time. (One of a set of 20 Animal Ark stories which we’d bought as a present for being brave in hospital). And challenged me to a game of Top Trumps. And needed less pain medication. And giggled. And was herself again.

No matter how dark a day is, the light always returns. Always.

Video is R. Dean Taylor - There's A Ghost In My House

Straight

People who can make stuff have my utmost respect.  People who can create things. Who can fix things. Most impressive of all are people who can fix people.

The picture I’ve posted today is the best example I can think of.

Have a look at these screws and trust me when I say they are very, very, carefully positioned. These have not been Black & Deckered into some rawlplugs and then given a hefty thump with a hammer to make them flush.

No. These little babies have been meticulously placed, to within an ‘nth’ of the spinal cord. I use the term ‘nth’ as the exact measurement escapes me. It was a ‘somethingth’ of a millimetre. Close enough to make me feel faint.

These are what have hoiked my daughter’s spine back to an angle which can medically be described as ‘still a bit wonky but by God a hell of a lot straighter than it was’.

It was a spinal fusion operation. After these rods and bolts were fitted, bone was laid over the scaffolding and given the chance to fuse with her spine, so it has now 'set' forever, at this new, improved angle.

This is what is inside my daughter’s back. This is what has stopped her spine continuing a deadly curve that would eventually have harmed her internal organs and started to crush her lungs. 

This is a genuine, 24 carat gold (well titanium), unequivocal, it blows my mind every time I consider it, will you look at the size of those bolts, they’re sticking in her spine for God’s sake, how the hell do they have the balls to even do that, the air conditioning failed in the operating theatre you know, seven hours it took, I have never been so frightened about anything, MIRACLE.

Did I mention it was free on the NHS?

Video is The Stranglers - Straighten Out

Cast

Every nine months, we had to get my daughter plaster-casted. Wrapped up in warm, Plaster-of-Paris-coated bandages, like a miniature Egyptian mummy.

The problem was that when she finally gained the strength to sit up, she was lop-sided. Scoliosis (curvature of the spine) was diagnosed, and like a sagging bridge, she needed some sort of scaffolding.

This came in the form of a body brace. A plastic strait-jacket which she had to wear day and night. As she grew, new ones were made to fit the exact contours of her wonky torso using moulds made at regular plaster-casting sessions. We used to return from the hospital with white flecks on our clothes and in our hair, like the oddest painter and decorator team you’d ever seen.

Later, when she learned to stand, she had to get up like a baby giraffe, spreading her legs out wide to get her balance, as there was no ‘give’ in her top half.

We could only hug her properly for half an hour around bathtime when we were allowed to take off the brace. My husband and I would fight for cuddles like drinkers jostling their way to a free bar at a wedding, knowing the money would soon run out.

We used to banish night-time fears of monsters by making up a story of how a big, bad wolf crept into her room and tried to bite her, but slunk away, after hurting his teeth on her cast. Mr Wolf told all his monster friends not to try to eat up the girl with the indestructable superhero armour.

She doesn’t have to wear it now. When she was first free of it, she felt vulnerable. And I wished I’d not told her that bleedin’ wolf story.

The video below is 'Cast - Alright'. I resisted the terrible urge to post something by Phil Collins from No Jacket Required. No, no, there's no need to thank me.