Day Twenty Three

I am used to random queries from my daughter. 

My favourite ever was: “Is Hitler in the school toilets?” The answer, which should come as no surprise to you, was no. Let’s face it, however desperate a time-travelling Hitler was for a fuhrerdumpf he’d never have got past reception, would he?

Today’s question, which has been unravelling nicely over lockdown, like my sanity, wasn’t quite to that standard. 

“If I sleep on my back, I won’t get taller, will I?” my girl asked, several times. Phase 1 was launched.
“No. You won’t,” I replied.

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it?” Phase 2 had been initiated.

“Yes.”

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it, because I can still ride my trike and my feet can reach the pedals.” Boom! Phase 3 was deployed and detonated.

I don’t know where to start with the flaws in her logic. Quite how choosing to sleep on her back could affect her height is beyond me. And wouldn’t it be getting shorter, not taller, that would make reaching the pedals a problem? There's also the small matter of her being 21, so her growing years are over, let alone the fact she had spinal fusion surgery at the age of 10.

But pointing this out would be a dangerous plan. Best not to get sucked in. A Prader-Willi person on a questioning jag reminds me for some reason of that quote from The Terminator, you know the one...

"That terminator is out there. It cannot be bargained with. It cannot be reasoned with. It doesn't feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.".

Actually, on second thoughts, that's a bit extreme. A PWS person would stop when it was teatime. But you get the picture; they can go on a bit. The best tactics in this situation, is to agree, firmly, and leave the room quicker than Adolf jettisoning his kampf.

The only problem today was the Second Front. Running away from one child only put me in the line of fire from the other.

My boy had decided early on that this Monday would be an ‘appalling, anarchic attitude and backchat during his home school lessons’ kind of Monday. 

Attempting to supervise him on a piece of work that should have taken just a few minutes saw me eventually resort to several embarrassing clichés, including: “It’s your own time you’re wasting.”

But the smart little bastard can always burst my bubble. Right when my emotion level was bubbling around ‘abolutely livid’, I warned him: “Don’t laugh. If nobody else is laughing then it’s not funny,” I said.

He didn’t miss a beat: “Tell Uncle Ian that.”

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Johnny Nash - There Are More Questions Than Answers

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You've got three more days of this and then I'll stop, I mean that's worth something, isn't it?

Home

She’s home. 

“Just like my estimate, Mummy,” she told me pointedly, as she walked from the car to our front door. 

She’s got a bag full of paracetamol, ibuprofen, some slightly stronger painkillers, and a selection of sachets and tablets with...er...‘moving’ qualities. (Poowatch Update: she’s been discharged without the Significant Event actually happening yet.  We are ready and waiting for the bomb to drop. I’m whistling the Dambusters theme).

I had a Facebook Memory thing come up the other day. You know, where a blast from the past from a certain number of years ago pops up in your timeline and you can re-share it. (I like to call these pics ‘Inexorable March Of Time Photos Showing You How Fast Your Life Is Flashing Past And How Much Closer You Are To Death’, but yes, let’s go with Facebook Memories). 

It was a picture of my daughter in her hospital bed seven years ago, a few days after surgeons had bolted titanium rods to her spine. Lying next to her is her little brother. 

I looked at her today, when she had a little rest on her bed to recover from the car journey. And had an idea, calling her not so-little-any-more brother over to carefully climb onto her bed, to 're-enact' that original post-operation pic. 

Three things struck me: 

1) She's even braver and more determined than she was then
2) He's no longer off the scale on the chubby cheekometer
3) She did it. She endured. And came out smiling. Again.

Welcome home, sweetheart.

Song is Hannah Peel - You Call This Your Home

Day 6

My daughter spent another shaky morning coping with PWS anxieties as she continued to recover in hospital after Friday’s spinal surgery.

I’d ordered her meals, you see. Breakfast, lunch, and tea. But having been told she might be going home today, she said we should cancel the latter two. It wasn’t a suggestion - she was insistent. The bee was well and truly trapped, buzzing in her bonnet.

I explained that we could easily cancel later if she was discharged. And that in hospitals, this happens all the time. And that the next patient in her bed might need her meals. And that it was better to have it in case she was still here. And that she’d been even more upset if everyone else had a dinner and she didn’t. And then I realised that of course she’d stopped listening before I’d aired even the first of these salient points, and was in floods of tears again.

I told her I was going to cancel her food, walked around the corner, twiddled my thumbs, informed nurses of my pretence (telling them under no circumstances to cancel ANYTHING), and returned to her bedside. 

“It’s done. I’ve cancelled your meals, just like you wanted me to, OK?”

She looked at me. “But what if I’m still here?” And crumpled again.

It was a repeat of yesterday’s waves of emotion. They crashed over her again and again as I chivvied her along to complete her tick-box of tasks for the day (getting in and out of bed, walking to the loo, walking up and down a set of stairs in the school room, and getting into the wheelchair for the porter to take her to the X-Ray department). I told one concerned nurse that her upset definitely wasn’t pain meltdown, it was brain meltdown, and ‘getting on with stuff’ was really the best tactic. When emotions get the better of my daughter, her tired distress simply has to wash away by itself, and the only effective thing anyone can really do is to wait it out. “We might as well do what we need to do in the meantime,” I explained. So we did. 

I should probably point out that this kind of cruel-to-be-kind parenting includes a fair dollop of bluster on my part. It was a long, hard morning, and I ended up outside, with my head resting against the plexiglass of the covered walkway as the rain pelted against on the other side, taking deep breaths and fighting back my own waves.

By lunchtime (yes, lunchtime, the lunch that I ordered against orders, and that my daughter tucked into with gusto, eyeing me up as clouds of smug ‘I told you’-ness floated off me), she was back to her smiley self. Still stiff and sore, but giggly as we sat and played a game of Uno with a member of the play team.

And the good news is, she’s signed off by doctors and the physio, and her meds are bagged and ready. She can come home. Well, (and this is something which my boy thinks is the greatest reason EVER), she can come home, but only after she’s had a poo.

And, as you can probably guess, despite helpings of prune juice, laxatives, and hot peppermint tea, there is still no sign of the Captain’s log being updated. *Insert joke about 'Klingons on the starboard bow' here*.

My husband has signed in for the Night Shite Shift. I have actually run away and returned home for the night, leaving him to face tomorrow’s impending unholy trinity of ‘WHICH DAY AM I GOING HOME?/SHOULD I ORDER MEALS OR NOT?/WHY CAN’T I POO?’.

Never, in the field of human conflict was so much owed by so many for one poo. 

Song is Chuck Berry - Too Pooped To Pop

Day 5

Photo depicts thumbs-up afternoon calm after morning storms...

Oof. It had to come. This morning was challenging, and when I say challenging, I mean mind-meltingly, patience-batteringly awful.

It wasn't the pain my daughter felt from Friday's major spinal operation, because she's handling that like a little Rambo. She could so stitch up her own mortar wound and bomb the shit out of some racial stereotypes, no problem. Today, for example, 72 hours after being sliced open and de-scaffolded, she's sat in a chair for breakfast, lunch and tea; walked to the play table to play board games with her dad; pottered along to the toilet three times; and had a sit-down shower and hair wash.

No, today's hot potato was an anxiety/stubborness issue. To be more specific, a Prader-Willi Digging Her Heels In And Not Accepting That Something Stuck In Her Head Like A Lump Of Granite Isn't Necessarily Correct problem. Otherwise known as a Fecking Fixed Idea.

It had been bubbling under since her admission. She was understandably very keen to ascertain when exactly she'd be going home. A succession of nurses and doctors have revised their answers as her recovery has progressed. But the general consensus of  'Probably Tuesday or Wednesday' somehow got mis-translated in my daughter's head to 'Wednesday', then to 'Definitely Wednesday'.

And now, of course, it's looking like it's going to be tomorrow. A day before what she's decided is the right day.

So I spent the morning mopping up tears and trying to explain that she really shouldn't feel bad about going home from hospital earlier than expected. My explaining and cajoling had bugger all effect, and just to twist the knife, I was brutally informed that hospital food was nicer than my cooking.

However, thankfully, three and a half hours of tidal upset later, she suddenly, inexplicably decided to shake it off. The immovable thought became movable.

Tuesday or Wednesday is now acceptable.

Fuck. What if it's Thursday?

Song is The Attack - We Don't Know

Day 4

The parental shift rotation plan for Saturday night worked a treat, and I felt lucid and human again after a proper night's kip at home. The relentlessness of the last few nerve-shredding days eased.

My husband and I did the swapover thing. I handed him a small, farty boy, and he left me at my daughter's bedside, informing me that she'd been performing miracles for the physio again, sitting in a chair and even managing to walk along the corridor and back.

I saw it for myself before too long, when the nurse said she should try another little walk. I held my girl's hand as she took slow and careful steps, wearing her funky trainers and her less-than funky hospital gown. She wasn't wobbly. My bottom lip was.

She was up again to sit in her chair to eat tonight's tea. Earlier, she'd discovered the menu's spicy halal page and had made a beeline for the beef madras. She finished every last smidgeon of sauce, then requested her first foray to the loo (although I don't think the moving effect of the madras could have been that instantaneous).

So she's done three walks today. Oh, and that was after coming off the morphine drip first thing this morning. Two days after major spinal surgery, she's taking paracetamol but not strong painkillers. She gets pale and quiet after each exertion, but she seems to be using power naps to recharge.

I know her syndrome comes with a high pain threshold, but it's not just that. She seems driven. So where's it coming from? Well, she's obsessed with not staying in hospital any longer than she did for her original operation seven years ago. So the determined little bugger is willing, persevering, and pushing herself to her limits.

I can only watch and marvel.

Song is Etta James - Take It To The Limit

Day 3

The physiotherapist eased my daughter into a sitting position, and let her breathe steadily for a few moments. She stationed herself on my girl’s right, I was instructed to go left, and between us, with guiding hands on her bum and under her arms, we helped her to her feet.

There she stood, 24 hours after they’d wheeled her through the theatre doors for her spinal surgery. A day, not even a full day, from the end of her op to remove the titanium metalwork in her back. It was only for a few seconds, but she took a couple of hesitant steps before she sat back down, and we helped her get back onto the bed for a rest. She squeezed the morphine pump, so I knew it had hurt. 

We were in a room in the HDU (High Dependency Unit), which is where patients go after surgery when they leave the recovery room. With our own dedicated nurse, and the unit quiet due to there being no new admissions over the bank holiday weekend, it felt like my girl was getting VIP treatment. I can’t say the same for my squirmy night on another uncomfortable mini sofa bed (they all seem to be mini, so maybe I should face facts and admit perhaps it’s me who’s maxi) by my daughter’s bedside. But it’s kind of churlish to complain. I think my girl probably wins in the ‘who’s got the stiffest back’ stakes.

My grey-faced little stoic had done it again. A succession of medical staff throughout the day did the same double take when they heard she’d already managed to stand up. 

It wasn’t long before we were given the go-ahead to return to the ward. The porters trundled her bed back to her space on the adolescent ward, and another stage was complete.

By the afternoon, the colour was returning to my daughter’s face and she was voluntarily demonstrating to the physio (who was passing, having just seen another patient on the ward) how she could lift her legs and hold them three inches above the bed as she lay flat. This was jumping ahead from the ‘wiggle your feet’, and ‘raise your knees’ exercises she’d been told to do.

Her dad turned up with her little brother in tow. My boy had been warned that his sister would still be delicate, and that he was not to jump on the bed under any circumstances, so he stood by her bedside, giving her a wide-eyed look. I gave him a tour of the various tubes and machines (less of them now), explaining what they did. He was particularly fascinated with the lower leg inflatable massager thingies* (*not their technical name), and his sister’s ‘giant bag of wee’, the latter, leading, inevitably, to an excitable discussion about poo. Everything with that boy leads to an excitable discussion about poo, but I suppose I should be thankful that at least it was relevant.

For now, I’m home. I’ve just watched Indiana Jones with the little swashbuckler, and put him to bed. I’ve got a few pit-stop style things to sort, but I’ll be hitting my own lovely, lovely bed soon, for a proper night’s sleep. My husband’s feet will be sticking out of the pull-out bed by my girl’s side tonight. (He’s 6ft 2in, so they really will). We’ll switch tomorrow. I'm missing him. The times we have to tag team are the times I most need him close. 

There was one final amazing and impressive occurrence for the day. I got an email with a photo attachment, saying my daughter had managed to sit up and eat her tea, feeding herself. The facts of the message weren't what shocked me, though. No, the astonishing thing was that my luddite husband had sent me an email for the first time ever.

Video is R.E.M. - Stand

Day 1

I didn't expect the day before my daughter's spinal op to be so much fun.

Five minutes after we checked into the teenage ward, we were  invited to the 'Bubble Show' next door in the younger children's area. Bubble Dan and Bubble Janet had a big donut-shaped trough of liquid, some de-stringed badminton racquets, a less-than-consistent ability to produce giant bubbles, and completely horrifying levels of enthusiasm. They were like Rod, Jane, and 'we don't like to talk about Freddy since that investigation'. My girl loved them. I had difficulty stifling my hysterics. Then they made me into a 'human bubble tube monster'. I still smell of Fairy Liquid.

We spent the rest of the afternoon getting our bearings; chatting to nurses (as they took blood and did 'obs'); playing board games; and completing a One Direction jigsaw dating from before the Harry and the boys' balls had dropped.

It was discovered that there was free wi-fi. "This is completely AWESOME!" was my girl's response, already firing up Topsy And Tim and Eastenders on the iPlayer.

It was only when I took her into the wet room to shower her tonight that her anxieties began to fizz a little. She was tired, excited, and a little bit overwhelmed. But she held it together. Struggling to get her to listen, stand still, and turn as required, I soon realised my clothes would soon get soaked, so I took the easy option, stripped off, and joined her. Which she found fecking hilarious, principally because of my 'wobbly' tummy. Thanks, darlin'.

She's nil by mouth from midnight. And first on the theatre list. She's announced she wants a late breakfast and lunch "as soon as possible after I wake up, because I am definitely not missing out, no way".

She's asleep next to me. I'm perched on a plasticky miniature sofa bed which I fully expect to lose a finger to later when I muck up the pull-out procedure. (The last time that sentence was uttered, I didn't lose a finger, but I did get pregnant).

It was just the consent form that made me wilt. The risk bits. The words the surgeon pointed to so they weren't said out loud in front of my girl.

Sod it. I'm gonna think of bubbles, boy bands' little bollocks, and catch-up dinners. And just carry on looking at my girl. Here, fast asleep in a dark, noisy ward, cuddled up with Toffee Bear (a veteran of the 2008/2009 original surgeries), in her new, bright blue nightie, a big day ahead of her.

Big days come around and we've got through them before. We'll get through this one, too.

Song is The Small Faces - Don't Burst My Bubble

Ready

It’s here. My daughter’s spinal op is all set for tomorrow.

Well, at least, as long as it’s not cancelled at the very last minute, which is something I'm refusing to contemplate. We’re about to head off to hospital, as we have to report in today. If they say my daughter’s op is off, then I shall simply stick my fingers in my ears, tra la la for a bit, and possibly stage a sit-in.

Her anxiety levels seem relatively low. But she does like hospitals.

Seven years ago I spent a terrible, interminable day waiting as surgeons cut my daughter open, inserted titanium rods and bolted them onto her spine to act as scaffolding to correct her scoliosis.

Tomorrow, I’ll be spending two hours fretting whilst they remove the metalwork to ease the nerve pain she’s been feeling intermittently for the last year.

My tactics this week have been simple: I’ve worn myself out going for long swims and long walks. I’ve clocked up 25,000 steps a day, and when my head has hit the pillow at night I’ve been so tired that I’ve instantly dropped off into oblivion.

I’ve got a feeling that tonight I won’t get a wink. I’ll have a camp bed by her hospital bedside, and the worries I’ve been burying will surface and swirl.

Maybe I’ll take my trainers and pace around the hospital corridors.

She’s ready. I’m going to have to be.

Song is Aretha Franklin - People Get Ready

Decolonisation

We headed back from the hospital.

In the boot was a bag of scrubs and ointments that have to be administered to various parts of my daughter’s body in the five days leading up to her upcoming operation. The lotions and potions are to rub on her hair and skin, stick up her nose, and swill down her throat, all to minimise the risk of her developing an infection after her back surgery. They came with an explanatory booklet with the catchy title: 'A Patients’ Guide To Staphyloccuus Aureus Decolonisation', which sounds like something Douglas Adams and Philip K Dick would have come up with if they’d written a novel together.

My girl’s pre-op assessment was complete. She’d been weighed, measured, had her bloodpressure done, had nasal and groin swabs taken (yuk!) and is now, officially, paperworked up to the eyeballs.

The ever elusive date is still to materialise, but the vague timetable has shifted from 'May/early June' to 'possibly April'.

My daughter panicked when the nurse said this. “April? It won’t be on the 13th, will it, Mum? Because we’ve got travel training at school that day.” (Travel training is where her teaching assistant takes her out to improve her road sense, trying to teach her how to safely cross roads, and how to catch a bus etc.).

“Sweetheart, you can do travel training any time - you do it every week, don’t you?”

“Yes, but I don’t want to miss the 13th. I DO NOT WANT TO MISS IT.”

“Right, I’ll speak to school and if the op does clash with it, they will promise to do it another day with you so you don’t miss out, OK.”

“Yes.”

“Are you happy with that?”

“Yes. As long as the op isn’t on the 13th.”

“Right. Remember, they’ve only said April - it could be any day in April. We just don’t know until we get a date, so there’s no point in worrying.”

“Ah, OK. Any day. Just not the 13th.”

Later, much later, when we were home, and the circular conversation had run its course, my girl headed for our TIVO box, and searched out her treasured saved programme folder of Topsy and Tim episodes.

“I’m watching the one where Topsy has her appendix out,” she told me, solemnly. “It’s like practice for me about being in hospital.”

She’s practised about a dozen times so far. Topsy and Tim are intensely irritating little shits, aren't they? Still, it could be worse. It could be Patch Adams.

Song is Jill Scott - Prepared

Teeter

My face. Teetering.

We have the go-ahead. My daughter will have an operation to remove her spinal metal work. 

It’s more than three months since her op was cancelled with just three days notice. It’s more than 10 weeks since she had a scan which would prove whether she definitely needed the procedure or not - but which no-one would tell us the outcome of. It’s been long enough for my girl to rack up astronomical repeat numbers for the question: “Will I have the operation?” It’s way past breaking point for me, after scores of phone calls trying to get someone, anyone, at the hospital to tell me what was happening.

At first I waited politely. Then I started phoning. Again and again. Again and again I was promised someone would phone me back. Again and again they didn’t. When the consultant’s secretary and I were frankly getting sick of the sound of eachother’s voices, I contacted PALS (the Patient Advice and Liaison Service) to ask them to get answers on my behalf. Again and again the answers didn’t come. I pestered. I really pestered.

Do you know what finally worked? There was a moment, when I was leaving yet another message on another answering machine, where I was recounting the sequence of events yet again, when I got to my teeter point. (Not the moment when I go all wobbly after to much wine, that’s different). No, this particular teeter point is when I’m having a difficult conversation (in this case to a machine, but hey, it was still intense), and when I feel myself getting a bit emotional. What I normally do is take a deep breath, make a decision to rein in the inner tumult and pull myself together. But not this time. This time, a little voice in my head whispered: “Fuck it. Let it go.” You know, like some sort of X-rated version of Frozen.

So that’s what I did. I didn’t stop my voice from breaking. I didn’t stop the tears from coming. I didn’t stop the anger from rising. I pleaded, I cried and I seethed, and it worked. A day later I got my answer.

It will be May, or early June. My girl is having a pre-op appointment this Thursday, which I snapped up before even hearing the time and working out the logistics of sibling school runs and early morning traffic and other extraneous bollocks. Nope, I was taking up the first appointment they offered, because that would mean she’d be ready to roll when a date comes up. 

We have the go-ahead. Finally. We don't have an actual date, but we have a ballpark and the ball is in it.

Oh, and I have something else. It's a recommendation to any parent lost in the labyrinth of NHS admin: Whatever you do, check, double check, triple check, pester, pester some more, pester again, keep on pestering, and sometimes, just sometimes, when you’re teetering, don’t step back from the edge - jump right off.

Song is Let It Go. No, not *that* one.

Interim

"Well, I was playing the clarinet, the phone rang, I jumped, and..."
My daughter's interesting interior.

I have a new favourite person.

It doesn’t take much for someone to get into my good books. Cake and alcohol usually works, although a new abstemious regime for 2016 means other ways are now needed to win my heart.

My new love is one of the back specialists at the Royal Orthopaedic Hospital, in Stanmore, and he wooed me with his words. Or more specifically, the words he used when he talked to my daughter, after she walked into her consultant appointment yesterday to discover he was a different doctor to the one she was expecting, and began to gently lose the plot.

This chap immediately ignored me, and talked directly to my girl, explaining how he was on the same team as her usual doctor, who he’d be working very closely with. Over the course of several minutes, in a calm, simple, and non-patronising manner - and without any prompting from me - he talked her down.

One of the offenders (left hand bolt)

He then explained to us both and showed us on the computer screen exactly what was going on with her back, answered my questions, answered her slightly more random questions, soothed her anxiety a few more times, and most importantly gave us both his full attention, respect and time.

For the first time I could properly see and understand how some bolts anchoring the titanium rods that helped her spine fuse in a straightened position eight years ago are pressing against the ‘membrane’ which protects the spinal cord. That’s what’s causing pain, and that’s why they need to be removed.

As I suspected (gggrrrrr!), the results of the SPECT scan (carried out a a different hospital a few days before) weren’t yet in, but my new best friend told us that he’d be surprised if they showed anything that could be behind my daughter’s discomfort.

“So, I'm going to tell you what will happen now,” he said, again addressing my girl, who returned his gaze solemnly. 

He broke his explanation down into short sentences, pausing between each to check if she'd taken things in:

“I think before very long we will be sorting out this operation for you."
Pause...nod.
"I know you were supposed to have it before and our plans changed, so I'm sorry about that."
Pause...nod.
"I cannot say yet that you will DEFINITELY have the op, which I know you would like me to."
Pause...nod.
"But don’t worry - your mum will be able to call us when the scans come in."
Pause...nod.
"And after we’ve had a special meeting all about you, we can tell you what will happen."
Pause...nod.

"We’ll do that as soon as we can."
Pause...nod.
“And you need to know that your spine has fused so well that you will stay lovely and straight if we take the metal out.”
Pause...nod.

And then the killer finish.

“You don’t need to worry. I know it’s hard, but will you try?”

She gave her biggest, most forceful nod.

It wasn't the black and white decision she needed. But it was a damn fine interim explanation.

We both shook his hand as we left. I was this close to kissing him. 

Song is Frankie Beverly & The Butlers - She Tried To Kiss Me

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). 

Cancelled

I’ve taken a deep breath.

Everything has changed.

A doctor (well, a ‘Mr’) from the hospital rang at 5pm. Just as my girl was tucking into her tea, and 30 minutes before we were due to head to her school for the pupils’ Christmas Show.

He informed me that the surgeons had been at their usual Monday multi-disciplinary meeting discussing the week’s upcoming operations. 

He said they’d looked at my daughter’s case and decided they want her to have a different type of scan before they carry out any surgery. They want clearer evidence that removal of the titanium rods in her spine is completely necessary. Why they decided to have this discussion now, and only now, just three days before she is due to be admitted for her op, is a mystery. I had no questions, nowhere to go, no room to think. I listened to him and felt numb.

It's been exhausting getting my girl into a reasonably calm and prepared state. Telling her that the op is cancelled, and not being able to say whether she will have to have it or not in the future, was like letting off a bomb in the house.

And yet, and yet, after the floods and floods of tears, the questions, the confusion, the waves of anxiety, the anger, and with her eyes red, her brain whizzing, and the planned upheaval to her routine totally upheaved, she wrestled herself into a state that could be describing as ‘getting a grip’. (Prader-Willi Syndrome Bingo Alert: all this happened whilst she methodically ate a low-fat Thai green curry, Activia yoghurt, and a bowl of grapes).

“The show must go on, sweetheart,” I told her, in a West End musical kind of way. “You have to be grown-up, because you can’t miss your Christmas show, and you can’t be crying.”

She didn’t and she wasn’t.

The show was what the show always is: amazing. One highlight was a lad called Ted, singing fantastically off-key at a high volume to Jona Lewie’s Stop The Cavalry with the added lyric: “Wish I was at home for...I’ve got an itch...mas.”

But it was the sight of my girl, doing the Jingle Bell Rock, just an hour or so after her world had shifted seismically, that hit me, that lifted me, that let me fill my lungs with oxygen again.

Everything has changed.

I’ve taken a deep breath.

Song is The Fall - Jingle Bell Rock

Treasure

It’s the little things. The kindnesses. 

My girl is going to have a spinal operation in two weeks’ time, so she’ll be having some recovery time off school.

Luckily, her school Christmas Show is before the op, so she can still take part. But she’ll miss a planned class trip on the bus to have a Christmas lunch at Wetherspoons. 

“I really want to go, Mum,” she told me. I’d already done the usual Prader-Willi prep (checking menu, assessing calorie content, informing teacher of what was ‘allowed’). “I know, sweetheart, but it’s after your operation so you can’t, I’m afraid,” I told her. She wasn’t happy. 

Wind the clock on a few hours, and she came out of the school gate, beaming, and babbling: “Guess what, Mum? My teacher said that because I’m missing the special dinner with the class they’re going back again especially for me and everyone is coming and we’re going on the bus and it’ll be a nice dinner and they said it’s to welcome me back to school.”

“That’s lovely. What a nice thing to do.”

“And guess what, Mum, James gave me a special present because he’s having a birthday party but it’s a trampolining party but I can’t go because of my back but you told his mum that and James has got me a present instead and it’s a Smurfs DVD.”

They may be small kindnesses. But in anxious times, they’re treasure.

Song: Soul Brothers Six - Some Kind Of Wonderful

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
Straight
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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