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

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

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

Related posts:
Snakes
Straight
Phantom

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

Hills

The path leading to Outpatients

The Royal National Orthopaedic Hospital in Stanmore, Middlesex, is on a hill. Some of the corridors are on a serious incline. To get from the outpatients reception desk to radiology you could sit a wheelchair, give yourself a push with one finger, and get there faster than a back-peddling UKIP press officer. Maybe it’s the hilliness (not ideal when many patients have problems with mobility) that has led them to run as astonishing hospital car parking policy of not charging. I stood there, clutching my fistful of pound coins,scanning the horizon for a sign or a meter, unable to compute the sheer reasonableness of the situation.

We visited the sloping specialist centre because my daughter has been complaining of pain. People with PWS don’t often do this (unless they are talking about hunger pangs), as they usually have a very high pain threshhold. To give you an idea of how high her tolerance is, my girl was on her feet two days after a seven hour spinal fusion operation, and home two days after that.

It’s her back that’s causing the worry at the moment. Six years after her two ops, for the first time, she’s been saying it hurts. “I am in extreme pain, Mum,” she’s been telling me, although I’m not sure she knows what ‘extreme’ means, and to my critical motherly eye it seems to be more along the lines of occasional ‘mild discomfort’. However, ‘mild discomfort’ to someone with PWS might well manifest itself as ‘extreme pain’ to someone without it, so we decided it needed checking out.

First there was the rigmarole of the appointment with the GP, who had to make a referral. Next there were the phone calls trying to find out why she hadn’t yet received an appointment at the hospital where they carried out her original operations. Then there was the dawning realisation that the evasive admin staff were essentially telling me they had a completely unmanageable waiting list, and it would be better to try and get seen somewhere else, so then it was back to the GP to get referred elsewhere, and then there was another wait, and now, finally, we were here. If I have one piece of advice for any parents when it comes to hospital appointments it is this: chase it up. Hang on: two pieces of advice: 1) chase it up, and 2) chase it up again.

So we arrived, were sent down an indoor ski-slope to radiology, watched in horrified fascination as a snooty woman kicked off about having to wait for 15 minutes as she had a terribly important meeting to go to, were seen by a lovely nurse, and went in for an X-ray.

I stood behind the screen, peering over the radiologist’s shoulder, checking out the computer image of my daughter’s Wolverine-style insides. It’s still a shock to see the two titanium rods, bolted to her spine, which has now fused around them. It looks like one of those X-rays you see on YouTube compilations showing weird things people have swallowed; her scaffolding makes it look like she’s eaten a clarinet. Every time I see it, I expect Acker Bilk to burst in through the door, looking really angry.

Once the X-ray was done, we belayed our way up to the main waiting area and were soon seen by a consultant. He spoke directly to my daughter and listened carefully to us. He couldn’t see anything untoward from the X-ray, but didn’t fob us off because he understood the Prader-Willi pain thing. He told us further investigations were needed and arranged for a CT scan to be booked. 

That’s in February. The follow-up appointment’s in April. The wait goes on. 

At least we won’t have to pay for parking.

Video is Peter Gabriel - Solsbury Hill