Normal

It’s two weeks on from my girl’s return from the hospital following her spinal operation.

Her meds have been reduced to just the odd paracetamol, although whenever anyone tells her that she’s recovering well, she looks a little perturbed, and insists, solemnly, that she is still  “a bit stiff and sore.” (Translation: “Don’t you effing well minimise what’s gone on, and don’t even think about sending me back to school yet”).

She was up and about pretty much as soon as we were home. She’s still using a hard-backed dining table chair with a pillow tucked behind her, rather than sitting on the squidgy sofa, but I think this is now more to do with it feeling like her own personal seat of special importance, rather than a question of comfort.

We’ve been out for coffee, and for a glass of her favourite spicy Big Tom tomato juice in the pub (see pub garden selfie above). 

We’ve watched nearly three series of the BBC’s old teatime drama ‘Merlin’. It’s about Arthur and Camelot and is kind of like Game Of Thrones without the tits and violence. Well, alright, it’s nothing like Game Of Thrones, but it does have a dragon. 

We’ve also visited the book shop and proved that the removal of the titanium rods from her back has made absolutely no difference whatsoever to her inability to BLOODY WELL CHOOSE SOMETHING BEFORE WE BOTH DIE OF OLD AGE.

Today we went to see the practice nurse at our GP’s surgery, who carefully peeled off the waterproof dressings that have been covering her 15 in long scar. The wound looked nice and clean. 

She really could be back at school. But her surgeon told her she would need to recuperate for approximately four weeks following the op. Approximation is an unacceptable construct for my PWS girl. So the four weeks is set, the date is fixed more solidly than any metal rod ever was, and I for one am not going to mess with it.

I was thinking today what were the things my daughter has found the most difficult to deal with over the past few weeks. Was it the pain? The anaesthetic? The scariness of having a big operation? The change in routine? The hospital environment? Nope. There have been two things, two huge things that have really bothered her, and left her in a desolate, weeping state.

The first was a poorly constructed sentence in an Eastenders listing in TV Choice magazine. Yep. (“Mum, it says ‘Ian Beale takes Bobby to the police station to see if he will be charged or not’. But Ian didn’t do it! Why will he be charged? WILL HE GO TO PRISON?”) The solution, eventually, was me taking a biro and changing the listing to read: ‘to see if Bobby will be charged or not’. Believe me, if I’d have thought of this several hours earlier, we would all have been much happier.

The second massive meltdown came today, and involved a malfunction of the BBC app which is designed to allow viewers of the Horrible Histories quiz show Gory Games to play along and answer the questions on their tablet as they watch the show. It glitched, and crashed. And my girl glitched and crashed in turn. 

It all got a bit fraught. But as I’m typing this, in the aftermath of fraughtness, I can look at it objectively, and say that this was a good thing. In my girl’s PWS world, getting randomly fraught over inconsequential things is perfectly, naturally normal. Two weeks on from a major op, I’ll take perfectly, fraughtly, naturally normal.

Song is The Soundcarriers - This Is Normal

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