Day Eighteen

The amount of forward planning that goes into these blogs ranges from negligible to non-existent.

But I did actually think about today’s subject in advance, noting that it would be particularly appropriate for International Nurses Day. Yep, the International Nurses Day that was yesterday.

I’ll blunder ahead anyway.

It’s a simple story, about one encounter with one nurse. It’s not about the palliative nurse who took such care to explain everything when my mum was dying. It’s not about the nurse that helped distract my daughter as she had to fast for a morning when doctors tested her growth hormone levels. It’s not about the nurse that put her arm around me as my girl went in for her spinal operation and I almost crumpled. It was a definite crump, but not a full crumple. 

No, it’s this one.

Seven years ago, I spent five hours in a waiting room on a busy Saturday morning, hoping  a consultant paediatrician was covering what seemed like half the wards in the hospital could hold good on his promise to squeeze my daughter into his list. It was at a time when my girl had started going through bouts of sleepless nights, culminating in hallucinations, outbursts of laughter, anger, and even swearing. For f***’s sake, no-wonder I was worried - she hates swearing. Yes I do know it’s hard to believe with her being the daughter of Potty Mouth McGrew here. The sudden, terrifying, and totally uncharacteristic behaviours had me desperately worried that she might have a brain tumour. Spoiler alert: she didn’t. It turned out to be a mood disorder, which has since been managed fantastically well with medication.

Soon after we arrived, exhausted from four nights without any real sleep, feeling pretty hallucinatory myself, I asked to speak to a nurse in a side room, away from my daughter, so she couldn’t overhear. I told her what had been happening, and everything hit me and I broke. I absolutely broke. I’m not certain if I actually fell, but if I did the nurse caught me, because I ended up being held up and hugged tight. I couldn’t speak, she didn’t offer any platitudes, she just held me and waited. It took a while.

That’s it. There’s no spectacular ending for you. She didn’t perform a life-saving operation. She didn’t discover a hitherto unknown medical disorder. She just did exactly what was needed. Then got me a cuppa.

And that’s why nurses are f***ing awesome.

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

Song is Etta James - Something's Got A Hold On Me

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. The PWSA UK works with medical professionals, you know, to help them know exactly what do when it's a little more specific to Prader-Willi. 

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

Appointments

This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.

Appointments

The appointments. Oh, the appointments. It used to be filofax companies, but now it’s Smartphone calendar app makers that we keep in business.

There’s the district nurse, and the consultant paediatrician, and the physiotherapist, and the geneticist, and the endochrinologist, and back to the consultant, and the height/weight nurse, and the orthotics specialist, and the Portage nurse, and the consultant again, and the A & E doctor, and the Special Needs Education Co-Ordinator, and the educational pyschologist, and the dietician, and the master plaster caster, and the surgeon, and the ortho chap, and the physio again, and the dentist, and the teacher, and the teaching assistant, and the consultant, and the endo, and the physio, and the SENCO, and the foot woman, and the back guy, and the substitute consultant that hasn’t got a clue, and the GP who’s ‘in charge’ of all the notes but who you never actually see because you see the specialists, and the consultant, and the research student, and the social worker, and the orthodontist, and the endo, and the transition person, and the consultant, and the whatdoyoucallher and the whatshisname and the rest of them, and there’s no rest from them, and you just want to tickle along and not feel like you need your own private bleedin’ parking space in the hospital, and it’s always on a work day, and you’ve never got the right change, and sod’s law you’re back again the next day to the same place, but then it’s a different hospital, and then they’ve lost your notes, and then you feel like standing in the corridor and yelling: "ENOUGH!"

These are the appointments you have when you have a Prader-Willi person.

They come in batches at different ages, and you do get to have a bit of a break, and then you get to have a bit of a spate.

Somehow you fit the rest of life around them.

The appointments. Oh, the appointments.

Song is Etta James - In My Diary

Spongebob

The Spongebob diary is a source of great happiness to me.

It’s a notebook (which my daughter decorated herself with a drawing she did of Spongebob Squarepants). It’s filled in every day by her teachers or teaching assistants, who use it to let me know what she’s been up to, tell me about things she’s enjoyed, things she’s struggled with, and any problems that have arisen. They also use it to inform me of any activities coming up which involve food, so I know what she’ll be having and can adjust her snacks accordingly, or provide a low-fat alternative if needed. I reply, and it works well as a quick, easy channel of communication between us.

But it’s the incidental things I like the best.

Here’s a selection (Nanna and Grandad feature quite heavily):

“We were talking about names today, and she said ‘When Nanny is calm, she calls Grandad Mike, but when she’s angry she calls him Michael and he goes in the garden.’”

“We have had strict orders from her to write in her book that she would love a foot spa for her birthday.”(!)

“We are encouraging her to choose something else other than Hello Kitty, which did not impress her much.”

“She was very talkative today and told us some more amusing stories about Grandad falling asleep and spilling coffee on Nanna’s new carpet.”

“We looked at products that change today, and had a bit of messy time with shaving gel. She told us: “You’ll be in trouble with my mum because she’s just washed my jumper.’”

They’re just little snippets. But what I like about them is that I can hear my daughter’s voice. When her teachers describe her day and how she’s reacted to certain things I recognise her personality and her behaviour. She’s being herself; she’s acting in the same way at school as she does at home. I find this hugely comforting. And I’m confident the staff at her school ‘get’ her. They seem to know what makes her tick, which goes a long way towards making things tick along more smoothly.

It's not all sweetness and light. But there’s a phrase that - thankfully - is common to the vast majority of entries: "She had a good day today". It’s a simple sentence. But it’s a damn fine one.

Song is Etta James - In My Diary