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'.

Friday, 13 September 2013

How do you tell a four year old?

How do you explain to a four year old what a bag and mask is for?

How do you explain to a four year old why his brother's not breathing?

How do you explain to a four year old why you need to call an ambulance?

What do you say when he asks how long it'll be before you come home?

Sean was probably around two and a half the last time we called an ambulance, three at the most. He'd seen it before, regularly, often, and it never occurred to him to worry. He didn't know any different. Ambulances and oxygen and hospitals had been part of his life for as long as he could remember. 

But we had a reprieve, a break from all that. 

And now he's four and a half. And he knows about emergencies and ambulances- they're taught it at nursery and school. Most children relate to it through things they've seen on TV- Fireman Sam and Balamory. Sean knows more than most.

He knows the paramedics come first in the smaller car. He knows that you have to wait a bit longer for the big ambulance- this one has the bed in. He knows that a bag and mask is to breathe for you and that sometimes Hugh's brain stops telling him to breathe. He knows that the blue lights and sirens mean its an 'emergency' and they can get to hospital faster this way. He knows his mummy has to go with his little brother in the ambulance to keep him company. 

He knows we won't be home tonight.

And he takes all this on the chin as he always has done. But he watches the paramedics closely and asks what they're doing to his brother. He hangs around the bedroom door shifting from foot to foot as they take blood, check temperature, test heart rate and monitor sats. He sees the wires and tubes and masks and blood and needles and strangers surrounding his baby brother and runs back in to watch Tom and Jerry. 

Minutes later he's back. "I'll make a get well card for Hugh mummy" and he gives me a teddy to bring for Hugh.

Tuesday, 10 September 2013

Coming Out, Little H style

I wrote my first ever blog post sat by the side of Hugh’s hospital bed in the isolation area of the high dependency unit.  It was 4am and I’d not been to sleep.  I watched the sun come up over the car park and began typing away on the tiny little buttons on my blackberry phone.  It was cathartic.  To put into words all the emotions and fears I’d been bottling up felt liberating.

It’s not that people didn’t ask if I was OK or how I was feeling.  They did. But how can you put into words that depth of emotion; those feelings of fear and despair?  How can you explain that each night, when you finally fall asleep, you wake moments later filled with an all encompassing fear that grips your heart making it a struggle to even breathe?  They knew I wasn’t OK; I knew I wasn’t OK; but the barrier was up.  I built a shell, a brick wall around my emotions and kept them there, for fear that if I allowed anyone to see even a chink of the horrors within, they’d all come crashing out, I’d fall apart and never be whole again.  And by not saying them out loud, I could pretend that everything was, and would be, fine.  If I didn’t say it, then it wasn’t happening.

But it ate away at me, chipping away at my brain, at my soul, until finally I committed my thoughts to a handheld device and sent them out into the ether.

With each post I wrote from that point on, I began to regain a bit of my sanity.  It helped order my thoughts and make sense of the crazy, horrible things that were happening.  The beauty of it was the anonymity.  If no-one knew me it didn’t really count.  I wasn’t betraying Hugh by admitting my fears, because no-one knew who he was. 

Little H and Little Mamma, but you can just call us Emma & Hugh from now on!
It’s been over two years since that first blog post and I’ve gone from anonymous, to semi anonymous to practically selling my soul to Google.  It started with a photograph here, an odd slip up or hint there and has turned into an almost shameless ‘outing’ of myself publicly.  This is partly due to Hugh and I appearing on the National Lottery show raising awareness for SWAN UK (What? You’ve not seen it?  I’ll put it on the video tab.) And partly to do with the F word.  Not that F word!  The *ahem* fundraising word.  You see, some wonderful friends of ours have been threatening, offering to fundraise for Hugh for years, but we refused.  Partly through pride (he’s our son, we should be able to provide for him), partly through naivety (We had NO idea just how much the label ‘special needs’  added to a price tag - £600 for a bean bag anyone?) and partly through wanting to keep our own business private .  Fundraising feels a bit like airing your dirty linen in public; “This is my son – he’s disabled, look at him, can I have some money?”  Scrap that, it feels a bit like begging. Or prostituting yourself (though I suspect I’d make much less money doing *that*).  But the truth of it is equipment, therapies, adaptations to the house, all come at a price; a price we could ill afford with two wages coming in, let alone with one.  And people want to help, they really do. Fundraising is a way for people that know us to help in a really practical, meaningful way.  (Another practical, meaningful way would be to bring me wine or do my ironing. #just saying).  But whilst close friends and family know the highs and lows and even lowers of the last three years, other people don’t.  If I’m asking people to help with my son, then I have to be honest about who he is.  So, whilst it feels a little like letting go of a security blanket, I’m taking the plunge and outing us.  Little H (or Hugh as he’s more commonly called) has his own facebook page which you’re welcome to follow and I’ll be linking that to here so that the people that know me in real life can *gulp* read about the dramas of the last three years. 

So, there you have it!  If you’ve come here from the facebook page, please be kind – I never expected the posts to be read by people who knew me.  And just a word of warning – the posts from the early days are pretty depressing.

I’ve been Little Mamma, you’ve all been lovely. Goodnight. 

You can follow our friends who are fundraising on twitter here: @FriendsOfHugh