“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.
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.
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?
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.
I missed my boy while I was in hospital for three days. Tonight, when I was doing his bedtime story, he suddenly pushed me off his bunkbed, announced he had a present for me, displayed his rear end, and did - in sequence - an armpit fart, a back of the knee fart, and an actual fart. I love him.
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.
My daughter had to go cross country, along open-sided covered walkways, to get to the theatre for the removal of her spinal bolts and rods. The nurse laid a London Marathon-style foil blanket over her to keep her warm as she lay flat on the trundling, wheeled hospital bed. The glittering green covering made her look like a disco caterpillar. I held it together until she went under. Right up until she drifted off, my girl was asking the anaesthetist whether she was totally sure that she wouldn't grind her teeth. If that was the uppermost worry in her mind, that was fine by me. But as she was whisked off by the bustling, efficient team in scrubs, I stepped outside with the nurse and crumpled, running through my whole repertoire of sobbing gulps and gulping sobs. I felt better when my husband arrived and the two of us went for a drink. I could have demolished a triple brandy, but made do with a head-buzzing double espresso and a large black coffee. We waited. Paced a bit. Played on a snooker app on my husband's ancient phone. And then, three and a half hours later, three and a half long, long hours later, the nurse appeared, smiling. We headed to recovery, dizzy with relief. The surgeon told us everything had gone smoothly. I got to my girl's bedside, breathless. She was pale, puffy-faced, and spaced out, but she and Toffee Bear were safe. She wiggled her toes on request. Toffee Bear couldn't manage it, but then again he's always been a lazy bastard. It's a couple of hours later, and we've had intermittent drunken loquaciousness, a couple of waves of tears, repetitive questioning, some declamatory finger-wagging, and even some tired smiles. In other words, she's been a post-operative, morphined-up version of herself. Her chief concern has been the fact she missed breakfast and lunch because of her morning op. I've just been allowed to spoonfeed her a bowl of Weetabix, and you'd have thought it was nectar from the Gods. We've a way to go, but we're on the way.
She’s home. 
