Wednesday, 27 November 2013

Has anyone seen my bucket of sand?

Has anyone seen my bucket of sand?
It was here earlier, I'm sure.
I think I lost it after that phone call from genetics.
It's got a head-shaped hole in the middle.
If you find it, send it back.
I miss it.

I had a call from the genetic counsellor today. It was expected. I'd requested it. Hugh was last seen by genetics at 10 months old; so much has changed since then, I felt they needed an update in case these new developments pointed towards some hitherto unthought of genetic condition.

My first meeting with the genetic counsellor had floored me. It was the misnomer you see- counsellor. I'd gone to that appointment expecting different things; counselling, support, information, understanding. Instead I was questioned about the lack of Hugh's development and interrogated about the cause of death of various family members. The purpose of the appointment was to construct an elaborate family tree and to get all the relevant information before the meeting with the Consultant Geneticist; it certainly wasn't to counsel me or to make me feel better about my failings as a parent. I left that appointment feeling like I'd been brutally stripped of any dignity I had left; I was no closer to finding out why my son was so delayed and still had no clue about what the future might hold for him. It took me a good 15 minutes of crying in the hospital toilets and a strong cup of tea in the canteen before I'd stopped shaking enough to be able to drive home.

This appointment would be different though. I knew what to expect; a question and answer session where I could elaborate on the developmental progress Hugh had made and draw their attention to some of the new diagnoses he'd had since our last meeting- most notably epilepsy.

"So Mrs Murphy, when we last spoke there weren't concerns about Hugh's hearing or vision... Is that still the case?"

"Ah, no- he's been registered blind since then."


"When we last spoke Hugh was 10 months old. He needed support to be able to sit. How has he progressed since then?"

"Ah, well... He still can't sit. 
Or stand. 
Or crawl. ... 
He can roll from his back to his front sometimes".


"And he's three and a half now, I understand. At 10 months he was making no speech like sounds or babble. Does he have many words now?"

"Erm.. No. He doesn't speak. Or sign. He has no meaningful intentional communication, unless you count crying and smiles."


"He'd had a normal EEG and ECG when we last met,anything new there?" 

"He's developed epilepsy. Life threatening epilepsy. He stops breathing for minutes at a time."


And on it goes ...

"Any feeding issues?" "He's fed via a tube".

"Any hospitalisations?" "Hundreds"

And on. And on. And on.


What I learnt in the course of that 45minute telephone conversation is that for all intents and purposes, my son has made no discernible progress in most areas of his life since he was 10 months old and in the remaining areas he has actually regressed or deteriorated. 

And he was already significantly delayed at 10 months old.


Conversations like this used to happen regularly. Each time I'd feel depressed and miserable, then drag myself up and just keep on going. Until the next appointment. When I was asked to recount his failings again.  But it's been a long time since we've met anyone new.  It's been a long time since anyone's asked if he was full term, if it was a normal delivery. Everyone knows Hugh now. Hugh's just Hugh- he does things his own way, in his own time. I know he is so far off track that we can't even see the target with binoculars. I know there's no way we are ever going to hit any recognisable milestones within a socially acceptable timescale. I no longer compare him to typical three year old boys and feel sad. In fact, apart from the occasional pang when a month old baby overtakes him developmentally (usually with eye contact or an amazing ability to hold their own head up) I don't really compare him at all.

You see, Hugh's health took a nose dive shortly after our last encounter with genetics. He had chest infection after chest infection. His seizures became more frequent and severe. He was in and out of hospital, week in, week out, often rushed in by ambulance. He repeatedly stopped breathing for minutes at a time, starving his tiny little brain of oxygen. Cocktails of powerful anti epileptics were pumped through his veins.  

Until at 16 months old, 
He could no longer feed orally and was fed via a tube, 
He could no longer roll, 
He could no longer use his hands,
He could no longer hold his head up,
He could no longer smile.

Setback, after setback; seizure after seizure; illness after illness; Hugh has fought back. And miraculously made progress.

And since he doesn't tick boxes on the regular developmental charts, he's decided to write his own.

Does your child...

Have a beaming smile that could light up a room?  [Y]
Ensure everyone they meet falls in love with them?  [Y]
Have the most fascinating hands in the world?  [Y]
Use said hands to grab shiny things and try and eat them? [Y]
Have everyone wrapped around their little finger?  [Y]
Use fake crying to get out of things they don't want to do?  [Y]

Now that's progress! 



* Disclaimer
The first appointment with the genetic counsellor might sound horrendous, but she was just doing her job. I'd misunderstood what that job was. I was struggling emotionally to come to terms with what was unfolding around me and that appointment tipped me over the edge.
During our most recent conversation, she was friendly and helpful. She didn't make me feel that Hugh wasn't achieving what he should be, I just felt deflated after the conversation as it brought the cold hard facts to light. She didn't make me feel that way.
Just felt I needed to clarify that in case anyone felt the genetic counsellor was to blame.*

Ethans Escapades

Friday, 22 November 2013

In the event of an emergency ... Please don't panic

I like to plan. I like to plan what I'll say in certain situations, what I'll do. I think of possible outcomes and plan how I'll respond, I deliberate on the alternatives and plan how I'll react. As a child, I remember meticulously planning my emergency exit strategy in the event of a fire; questioning my mum as to whether the chair would successfully break my bedroom window and how I'd manage to heave the mattress out of the window to break my fall, though I reasoned if this wasn't possible that broken legs were preferable to being burnt alive. 

Planning stops me panicking. If I'm prepared then I'll react appropriately. The first few times Hugh stopped breathing, I went into a blind panic, screamed, cried and called 999. I didn't try to resuscitate him, it didn't even occur to me; I was panicking too much. A state of panic is not a helpful state to be in. So now, whenever I go out, I plan how I'll respond if he stops breathing. I know where the oxygen is in the car, I have exit strategies for different buildings I go to, I always have half an eye out for places to pull over when I'm driving, it keeps Hugh safe and it keeps me sane. I know how I'll respond because I've practiced it in my mind. I won't go to pieces, I won't panic. And I rarely do, to be honest. I wait until he's safe in hospital, and all is quiet, and then I'll cry.

What I haven't planned for though, is what if something happens to me? Not as in, if I die- that's a whole other stress and panic and worry that will eventually become a blog post if I can stop crying about it long enough to write it (but if you want to read someone's else's take on this in the mean time, my good friend has summed it all up quite nicely here) - but what if I'm in a car accident, or my car breaks down, or I'm stuck in a traffic jam on the motorway and I can't get back to Hugh? Previously this wasn't an issue- invariably Hugh was with either me or Stephen, and the few hours he spent away from me with a carer, I was rarely ever more than 10 minutes away from him anyway, always nearby, phone in hand, ready to get back in the event of an emergency. But he's at school now and spending regular time away from me each week.

If I got stuck on the M42 and couldn't get back to school,there's a multitude of people who would look after Sean- grandparents, uncles, friends, neighbours... The list is endless. He doesn't take much looking after- he'll tell you when he's hungry, he can dress himself and go to the toilet by himself. The biggest problem you'd have is that he'd talk the ears off you! But in the event of an emergency Sean is sorted!

But Hugh? 

What if Stephen was in Ireland? And I got run over by a bus and broke both my legs? Or fell ill with appendicitis? Or got trapped in a lift? What if ... What if ... What if? There are any multitude of (mostly implausible) things that could happen to stop me being able to care for Hugh temporarily. So what happens then? How do I plan for that?

And this is the point I start hyperventilating. Apart from feeding him via his tube, anyone he is left alone with also needs to be able to resuscitate him (either with a bag and mask or giving mouth to mouth) and administer emergency medicine in the form of buccal Midazolam. 

There's a wonderful service called +cers who run an emergency service for carers. If you care for someone elderly or disabled, you can register with them. They'll write a detailed care plan and should you collapse whilst out walking the dog, the police- or whoever finds you- will be able to ring the number on the handy little key fob they give you and the +cers service will ensure that the person you care for is looked after for a period of up to 48 hours (longer on bank holidays). It's  great service and they're a lovely team. I'd really recommend them if you care for someone with less complex needs than Hugh.

They don't do tube feeding however, which for a short period of time isn't a massive issue for Hugh- with cheeks the size of his, he's hardly in danger of starving any time soon. For tube feeds they'd ask a community nurse to come and give them. So it's not ideal, but its manageable.

But they don't administer buccal Midazolam. Which is a much bigger issue since its necessary to keep him alive. 

So that's that plan out the window then.

Time to hyperventilate again. 

So how do I plan for Hugh's care if something happens to me in an emergency?  First- I'll keep praying that nothing ever happens to me! Failing that though, I guess it's Acorns Children's Hospice or the Community Nurse. It's not the best or most detailed plan in the world, but right now, its all I've got.

I'm not giving up on finalising a good plan just yet though. I've requested life support training again- it's always good to have a refresher- and I'm hoping some family and friends will be prepared to learn as well. They've done it before, long ago- before Hugh's seizures became really frequent and before we knew what a threat to his life they posed.  Our community nurse can train how to administer buccal Midazolam too. So then, in an emergency situation, if I suddenly developed amnesia or was kidnapped by aliens, there'd be a well trained army of people to help out with Hugh too.

If you want to find out more about the carers emergency response service you can do so here: http://www.cers.org.uk/

Thursday, 21 November 2013

Man Flu and Hugh

In the words of the Marks and Spencer's advert: It's not just a cold... It's a super-snot charged, nose clogging, breathing stopping, chest blocking, temperature raising sleepless night ensuing, germ fest.

You know the sort.

Except, with Hugh, even when it is 'just a cold', it really isn't just any old cold. 

Here's why:

• Hugh has to work hard to breathe when he's asleep. He's still really floppy, it's why he can't sit yet, he's got 'hypotonia' - floppy, not very strong muscles. Everyone's muscles relax a bit when they're asleep but when you're already floppy this can cause breathing difficulties. Hugh had his (huge) tonsils and adenoids removed to make more space and to make breathing easier for him, but he still has prolonged pauses in his breathing (apneoas) when he's asleep. We're still unsure whether this is just his brain forgetting to breathe (Central apneoa) or his floppiness making it difficult to breathe (obstructive apneoa), a long awaited sleep-study should tell us more. When his airways are blocked up (or partially blocked) with snot or inflammation this can make breathing even harder than usual. 

• Temperature and illness are seizure triggers. Seizures for Hugh mean stopping breathing and hospital admissions. 

• Cold - chest infection - pneumonia ... We all know how easily colds can go to your chest and cause chest infections, even in the most healthy of us. But, like the elderly, Hugh is vulnerable to this developing into pneumonia. Any chest infection is bad news for Hugh. Being unable to sit makes it more difficult to clear a chest infection- movement and positioning are key in getting the gunk off your lungs. Pneumonia in children like Hugh can be fatal.

Winter and starting school herald a dangerous time for Hugh with all those germs and all those colds to catch. He's been immunised against flu and hopefully that'll stave off the worst of it. 

Tonight, the first vestiges of a cold have appeared; grisly boy, running nose, slight temperature, so I'm on high alert. 
*Calpol's been given, 
*Temperature taken- I'll monitor this throughout the night, and adjust clothing/bedding as necessary.
*He's hooked up to the sats monitor (as he is every night) and in bed with me so I can keep a close eye on his heart rate and oxygen levels. So far oxygen's ok but heart rate quite elevated- this will be due to the slight temperature and the fact he's working so hard to breathe.
* I have the suction machine ready to suck up all the nasties if (and when) they block his airways
* I've done (and will again during the night) chest Physio to make sure none of the gunk sticks in his lungs, hopefully preventing a chest infection. 
* I have his emergency rescue medication to hand, in case he has a seizure.
* He's positioned carefully- head elevated, airways open to aid his breathing and I've brought his moulded bean bag to the bedroom in case he struggles and needs to be even more upright in the night. 
* There's a nebuliser in the house on standby if needs be, plus oxygen, and we have open access to the children's ward should he get very ill quickly. 

So whilst it is 'just a cold' and he'll no doubt be fine with a bit of calpol to tide him over the worst of it; I thought I'd share the level of preparation that's needed to manage  the common cold in a child like Hugh. 

Hugh really does like to take the notion of man flu to a whole new level. 

Thursday, 7 November 2013

Drum Roll Please ...

When babies reach for themselves in the mirror or bat at toys, you don't even think about the thought process and control of movement that goes into it- you take it for granted as just another stage in their development. But when your child struggles, you start to see the miracle that these simple achievements are.  

I remember about a year or 18 months or so ago watching a video of a friend's son playing with a toy drum. He's a similar age to Hugh and developmentally delayed as well. I was delighted and amazed at how he'd reached and used his hands intentionally to hit the drum, smiling then at the loud noise that resulted from his actions. I couldn't imagine Hugh ever doing that- it seemed too big a step for him. He had (has) limited control over his movements and his vision is so poor that seeing and then reaching for objects seemed nigh on impossible.  It also takes a level of cognition I wasn't sure was achievable- a simple understanding of cause and effect; the ability to formulate an idea in the brain and then work out how to do it before finally telling and making your limbs cooperate.

Then one day, Hugh found his hands. He loves his hands. He eats his hands. He holds his hands for hours on end.

Then he started to reach for things- familiar toys; first with one hand, then with two. Two hands working together.

And he started activating switch toys, first by accident when his hand knocked the switch.  And then with concentration and purpose.

Little by little.

Step by step.

Until this week, he did this:



I'm linking this up to the linky on Ethan's Escapades which celebrates 'Small Steps; Amazing Achievements', because it is, it really is!


Ethans Escapades

Monday, 28 October 2013

When Words Aren't Enough

Hugh’s fundraiser was on Saturday night.  I’m still not sure how much was raised; it was a lot though – an awful lot.  I am completely astounded by people’s kindness and generosity.  In a time of austerity and recession, so many people pulled together to make a difference for Hugh.  It felt like being on an episode of DIY SOS.  All these people, some friends, some strangers, some people I’ve not seen for years – all there to support my amazing little man.  I want to thank everyone who played their part.  But how?  Sometimes words just aren’t enough.

********* 


Thank you.

It’s not big enough somehow.

Not even when I type it like this: 

Thank you.

It’s just not enough. 

It doesn’t convey the depth of emotion I feel,
Or the overwhelming gratitude,
Or how humbled I am.

It doesn’t express how moved I am,
How my heart could burst,
How truly loved and blessed I feel.

And yet ... it’s all I can say. 

There isn’t a word or a sentence or a phrase that can express how I feel.

So ...

To all of my wonderful friends,
And to my family.

To everyone who donated the absolutely amazing auction and raffle prizes,
And to all who bid on them and bought raffle tickets.

To the band and the DJ
And the doormen and the barstaff.

To the random photographer
Who offered his services for free at the last minute after a chance meeting with my aunt.

To the people who couldn’t make it
But donated anyway.

To the people who travelled many many miles just to be there
And to those who came despite circumstances conspiring against them.

To everyone who sent messages
Of support, positivity and encouragement.

To the lady who left a surprise bouquet of flowers
Just for me.

To the people who went above and beyond anything I could ever have possibly imagined
To create a truly wonderful, magical, amazing night ...

Thank you.

Just thank you.

Sometimes you don't need words.



Wednesday, 23 October 2013

Tonight We Have Respite

Tonight we have respite. 

And while Hugh is cuddled and cared for by competent nurses, trained in every aspect of his care, Sean gets the undivided attention of his mum and dad . Together. Not one, or the other, while someone deals with Hugh, or feeds, or medications.. Both of us. Together. Just for him. 

On account of a brilliant First Ever parents evening, we took Sean out for a meal - to a local curry house; where they make a fuss of him and bring him sweets and where we'd never be able to get Hugh and his massive chair through the narrow door,up the teeny tiny corridor, round the tightest of corners to the jam-packed restaurant full of tables and chairs and customers. And we ate and we laughed and we ate some more. It was lovely.

And tonight, I can go to bed at whatever time I like (it will be early!) - not at midnight because Hugh has decided (again) that sleep is for losers. I can close my bedroom door without worrying I'll miss an alarm ora pause in breath. I can sleep, without the fear of seizures, or choking on secretions, or his latest trick- sleep apneoas. I won't wake until morning, not having to get up 5 or 10 or 15 times to re-set alarms, do chest physio or put Hugh in the recovery position to aid his breathing.

And Sean won't be woken in the middle of the night by the screech of alarms, or early in the morning by the sound of his brother's crying.

Tonight I didn't have to mix feeds and weigh powder and draw up medication into syringes. I didn't put on creams for eczema, tape sats monitors to tiny kicking toes or switch on the video monitor.

Tonight is a break or us all. 
It is respite. 
A break away from the routine.

Which is good. 
And important. 
And necessary.

And ten miles away, my baby is in a bed, in a room, in a hospice, on his own.

While his family ate and laughed together, a nurse bathed him and put on his pyjamas.

While we sleep, a stranger comforts him in the night.

Respite is good, and necessary and important.

But tonight, before bed, I could only kiss one of my babies goodnight. 
And that doesn't feel so good at all.

Thursday, 17 October 2013

Celebrating Progress

Children progress at different rates, even the baby development books will tell you that- never mind that they only leave your child with a two month window to achieve certain milestones! Sean measured up pretty average in most areas and a little speedy in others, I mentally ticked them off as he followed the expected pattern and eagerly awaited the next achievement on his list.  I even looked forward to the weekly Bounty and Baby Centre emails  which reminded me just how perfect and average and developmentally on target he was.  I unsubscribed from those emails when Hugh was about 10 months old, but I'd been deleting them, unread,for a long time by then. I'm not sure he has ever met a single developmental milestone on time, my guess is he's probably hitting a few of the 3-6 month ones now at three and a half years old.  But, you know what? Progress is progress, no matter how halting or slow and I'm happy to take what I can get.

So in celebration of my son's slow and meandering yet fantastic progress, I'd like to share with you some of his achievements of late. They're big big steps in Hugh's world, and in ours,and so I hope you'll appreciate them as such.


His vision and eye contact is improving

"Hmmm ... reckon this will fit in my mouth?"
Hugh's vision is poor, really poor. Technically he's registered blind but I always think that gives the impression he can see absolutely nothing, when in truth his eyes are fine- his brain just can't make sense of the things he sees and so he struggles to recognise things in the world around him. But lately he seems to be 'seeing' more and recognising things, most importantly - us! His hearing is fine and he's responded to our voices for a while, though he'd rarely turn to look, he would smile in recognition at the sound of us speaking. Lately though he is turning more often and smiling with flickers of recognition at our faces. I think he knows me by my glasses- they are dark framed which might be easier to spot- he has started swiping at my glasses with intent too and smiling when he's knocked them off.  I hope one day he will recognise me, it's starting to seem an achievable goal now.

He is gripping and holding things and using both hands together.

"I've got it Mum - and you're not taking it off me!"
A few weeks ago at conductive education, he held a maraca in each hand for the first time. Usually he can hold an item in one hand or the other but not both at the same time. He brought them both to his midline too (in the middle of his body- this can be difficult for children with neurological conditions as it requires both sides of the brain to work together). Since then I've spotted him grab at lots of things and hold them 
- a paintbrush at school that he dropped, he tried to find again with his hands on his tray and picked it up
- his mirrored chime-about toy he grips with both hands now and pulls it towards his mouth
-the blue ribbon on a balloon- he grabbed at it with both hands and tried to pull it to his mouth
 - he held a spoon and tried to use his other hand to push it into his mouth.

He is eating again. Properly. With a spoon and everything!


"Nom nom nom"
Hugh loves food, the sweeter the better, but ended up with an NG (nasogastric tube -up his nose into his stomach) after a terrible bout of seizures and a lot of powerful anti-epileptics pumped into his little veins. It was supposed to be 'temporary'; two years later he's still primarily fed through a tube. I'm currently replacing one tube feed a day with a carefully calculated meal containing no more than 2g of carbohydrate to fit in with his epilepsy controlling, ketogenic diet. This week we made soup. Potatoes are too high in carbohydrate so we had leek (low carb), celeriac (low-ish carb) and a  teeny tiny bit of carrot (higher carb), cooked in butter and blended with double cream. He seems to quite like it and at least it's a variation on my cauliflower cheese speciality. He's managing at least 5 mouthfuls but often more, much more, and then the rest I just put down his tube (when you've gone to the effort of weighing, blending and sieving, there is no way it's going to waste. Technically force feeding??? Erm ... Possibly...)

He is developing a cranky/ stubborn personality

"Who you calling cranky?"
True to the Murphy/Moran hybrid gene, he is displaying the stubborn bloody-mindededness of his brother and indeed his parents before him. Not to let a little thing like being unable to speak get in the way of communicating, he is pretty adept at shouting or whining to make his views clear. 

Here's Hugh's handy tips on getting his point across:
I do NOT want to stand up!
  • Not happy sat in the pushchair/bean bag/car seat? Shout and extend your body in an uncomfortable looking stretch until someone let's you out!
  • Don't want to be put in said pushchair/bean bag/ car seat? Go rigid! And shout. They'll never get your bum down that way!
  • Conductive Education? What... Where they try and make you roll and sit and stand? Sod that- too much like hard work. Fake complete immobility of all muscles and lie there like a rag doll getting mum to manoeuvre you into all sorts of crazy positions. Not working? Cry god dammit, cry! No-one will spot it's fake, surely? The lack of tears a give-away? Open your eyes- check ... Are they still looking? Cry some more! No good? Sleep! Sleep! Sleep! Open eyes to check they're convinced, make snoring sound.... Actually I might just sleep after all .... Zzzzz

(Yep, that is not a lie- my three and a half year old "profoundly disabled" son has mastered the art of fake crying and forcing himself to sleep as an avoidance strategy! Get in son! *proud mom moment* -albeit massively embarrassing)

"Yep, I am one pretty amazing Dude!"

So all in all, I'm mightily chuffed with our little man. 
Small steps and all that ...













And on that note I'll link this up to the 'small steps, big achievements' linky on Ethan's Escapades. They might be tiny steps but they're huge milestones for Hugh. 




Ethans Escapades

Saturday, 21 September 2013

Normal life resumes

A week ago my son stopped breathing. It wasn't the first time. Or the second. It wasn't even the 100th. It was probably in the region of the 250th-300th time. I'm not sure; he's done it a lot. And I stopped counting a long time ago. Some are short, only 30 seconds. And some go on for what seems like an eternity, second after second, ticking away.

It doesn't get any easier, watching him not breathing. It's different to the first time, of course. I know what to do now, there are steps I take, procedures I follow. But the emotions don't change, I'm still as scared as I ever was. Some times are worse than others, the longer ones especially, but every single time it happens I'm filled with the fear he won't breathe again. It's a distinct possibility. It's a strange and scary way to live.

He upped his game a bit this time, managing a full 16 minutes with only 1-2 breaths. The rest of the time the nurse used a bag and mask. I watched as his chest rose and fell, his lungs rhythmically  filling with oxygen with each squeeze of her hand. She kept his brain alive until the sedative hit the power off switch in his brain and he finally took a breath. Those were the longest 16 minutes of my life. 

He's home from hospital now and we are hoping a change in medication will prevent it happening again. It's a roll of the dice, a chance we'll take, praying the odds are in our favour.

And so normal life resumes. But it's hard to switch back when you've lived on a knife edge. It's hard to turn your back, to make tea or to answer the door or to go to the bathroom, when you're scared what you'll find on your return. In time, the anxiety will fade I know. I'll be able to hang the washing out again without running in to check, or have shower without needing another person to watch him.

But I know from experience that the nightmares will remain. 

The sound of the sirens, ever closer.
The white, the grey, the blue of his lips, his fingers, his face.
The whoosh and hiss of the bag and mask, breathing in, breathing out, breathing in, breathing out.
The silent sobs at his bedside, as I prayed "not now, not like this".

Tuesday, 17 September 2013

I'll have the usual please...

In the first winter of Hugh's life, he became a regular visitor to the children's ward. I remember during one of those early admissions talking to the nurse about his repeated visits and wondering if this was a pattern likely to continue. He'd had every illness going from chest infections and infected eczema to the more obscure cellulitis and swine flu. If you could catch it, Hugh would get it and he decided to further complicate matters by giving up breathing just before any illness would strike. Or while he was teething. Or indeed for no apparent reason at all. We later discovered this trick of going blue at inopportune moments was epilepsy. It certainly made winter *ahem* interesting and acquainted us with the West Midland's Ambulance Service. It also meant we had our own bed reserved at Hotel Heartlands- a nice little ensuite, with views across the car park. The nurse confirmed my worst fears- that some children were season ticket holders and became familiar faces on the ward.

Over the following year, I met a few of the regulars. You could instantly spot them- they were on first name terms with the nurses and helped themselves to bedding from the linen cupboard. They used medical sounding words and spoke knowledgeably and confidently to the Drs, no shuffling shyly and deferring to the Drs clearly superior knowledge for them! I watched in fear and awe as they handled huge syringes and pressed buttons on monitors with rapidly blinking lights and important sounding alarms. 

Hugh quickly secured his status as a regular with weekly, sometimes twice weekly admissions. He was presented with his loyalty card, granting open access to the ward. I was given a crash course in paediatric medicine, a learn while you work apprenticeship (though it was pretty poorly paid) supplemented by tutorials with Dr. Google. Now I'm the one asking for meds from the CD cupboard, with a collection of syringes on the bedside table, checking the oxygen at the bed stations and adjusting the settings on the SATs monitors. Other patients look on in wonder as Hugh is greeted like an old friend with exclaims of, 'He's grown so much' and nurses from neighbouring wards popping by to say hello, like he's a local celebrity. The parents glance slyly across as I attach purple tubes to beeping machines to hungry tummys. They turn away uncomfortable and embarrassed as I set off angry alarms and nurses and doctors come running with shouts of 'crash call' and I'm pushed to the side while near- strangers try to save my son's life.  They stroke the hands and faces of their own precious babies and silently thank God for *just* a broken leg and *only* a chest infection. 

And us regulars, war weary and battled scarred, smile a knowing smile at each other, a sad smile that says we've been there; we'll be back.

It has its upsides being a regular though : they know how you take your tea! 


Although rather irritatingly, they do still call me 'mum'.