Tuesday, 13 September 2016

VNS - The Surgery

"So, where are we off to now then mum?"
Second on the list for his VNS surgery, it was nearly midday before Hugh was called down to theatre. Unaware of what lay ahead he sat smiling in his wheelchair in the flimsy cotton gown. The theatre staff were brilliant and thoughtfully allowed me to take him down in his chair; he'd feel more comfortable and less threatened that way, rather than wheeling him on his hospital bed. He smiled all the way down to theatre, enjoying the new adventure.

Although six years old, cognitively he's still like a baby so there was no way to explain what was going to happen to him. Instead he sat in my lap and I cuddled him and sang nursery rhymes as they held the gas mask in front of his face. I admit I had to swallow a rather large lump in order to keep singing. I felt like I was tricking him somehow. 

The hard part, I find, is handing him over, limp and lifeless, when the gas has done it's job. Leaving your child with strangers, when they're so fragile and vulnerable is utterly soul destroying. It took every ounce of my strength to walk away after giving him one last kiss on the head. 

I'm not sure it gets any easier, watching your child have a general anaesthetic. Despite his complex needs Hugh has had comparatively few GAs - two for MRIs of his brain, one to have his tonsils and adenoids out and one to have his gastrostomy feeding tube put in. It's probably more than most six-year-olds but it's significantly less than some children with conditions like Hugh's. 

Waiting ... just waiting...
The VNS surgery takes about an hour. They make a cut in the chest area to place the electronic device and another on the neck where they attach the electrodes to the vagus nerve. Thankfully, they don't have to go anywhere near his actual brain during surgery. 

I was told to expect Hugh back after around two hours, by three hours I was becoming quite anxious, pacing the ward and moving things from the locker to the bedside table and back again. Finally after 3.5 hours we were called down. He'd struggled to breathe after surgery and they'd had to keep him intubated for longer than expected and when he did finally start breathing on his own his oxygen levels were too low. When I saw him in the post-op recovery room, he looked so small and frail.  Whilst I know that this is the best chance we have of controlling his seizures, I couldn't help but feel guilty for putting him through the pain.
Back on the ward, after surgery.

Although it took him quite some time to come round, the operation was deemed a success. Hugh remained in hospital overnight and was discharged the following day, with an appointment to switch on the device in 10 days time.

And so, Hugh's VNS adventure begins. 

"Adventure? I'm up for an adventure ..."

You can find out why Hugh needs Vagus Nerve Stimulation therapy here: The Next Step


Thursday, 8 September 2016

Waiting for VNS surgery

Waiting on the ward
Thanks to a cancellation, Hugh's VNS surgery happened rather unexpectedly towards the end of August. With only hours to pack and get to the hospital, I didn't really have enough time for the nerves to hit, or the realisation of what was happening to sink in. But that night after his bloods had been taken and we'd been prepped for surgery the next morning, I sat by his bed and began to think about what was in store.  
Whilst I can't deny a large part of me was anxious about the general anaesthetic and the operation in general, my overriding feeling was one of hope. Hope for an epilepsy free future. Or at least one where epilepsy didn't completely rule (and often ruin) our lives.
I imagined being able to go on holiday as a family to visit Hugh's cousins in Ireland; taking him to see where his grandparents (and great grandparents)  were born, and where his dad and I spent all our summers as children. I thought about the beautiful beaches we'd visit, the rocky coastal paths we could stroll along.
I imagined not having to plan everything around knowing where the nearest hospital is, without having to 'risk assess' every journey and constantly thinking about what you'd do in an emergency. Imagine driving without checking him repeatedly to see if he was breathing and without always planning where to pull in to resuscitate him, should the need arise.
I thought about Hugh having sleepovers with his brother at their friend's house and how I could leave him to play with other kids without me constantly being there watching him, checking. I thought how his granny would love having both boys over to her house for a sleepover and how Stephen and I wouldn't have to carefully plan how to use the allocated care hours we get so that we can go out together.
And I thought about the effects his seizures must have on Hugh. Almost every night for 10 minutes or more, his whole body stiffens and spasms. His legs and arms must constantly ache from that.  He can lose seconds and sometimes minutes at a time during his regular absence seizures too- how confusing must that be for him? Every few months he has clusters of seizures that terrify him- he screams and cries in pain and fear. I'd love nothing more than to never see that terror in his eyes as he looks at me pleading for it to stop and I'm powerless to do nothing other than sedate him. The huge apneoic seizures (where he stops breathing) that I live in fear of, threaten to starve his brain of oxygen, threaten to kill him each time they happen. He's lost skills in the past because of them- the ability to swallow, the ability to smile. He's managed to relearn lots of things but each apneoic seizure threatens to damage his brain and take away those skills he's worked so hard for. When he does, thankfully, recover, he is exhausted and will sleep for hours. Imagine him never having to go through those again? 
Sweet dreams before surgery
Of all the aspects of Hugh's numerous and complex disabilities and health needs, his epilepsy is by far the most challenging. Without it, life could be so much better for him and for us. 
VNS therapy is our last hope at getting rid of that evil demon from our lives once and for all. As I sat, watching him sleep peacefully, I felt hopeful that this was our miracle, the thing that would change Hugh's life and I prayed to God that it would work. 


Wednesday, 20 July 2016

The Big Build - Birmingham Style

I love watching DIY SOS The Big Build.  I love seeing people having their houses transformed.  I love the before and after shots.  I love the joy and wonder on their faces.  I love how the houses are always designed to meet the families’ needs and the clever, practical solutions that the team create.  I love that despite there often being a story of disability or illness that has prompted the need for The Big Build, the end result never looks like a hospital.  I’ve seen them fit a through floor lift painted yellow to look like a digger, I’ve seen brightly coloured wet rooms for children that look fun not clinical.  It really is amazing and inspiring. 



Yet the thing I love most about DIY SOS, the thing that invariably moves me to tears, is seeing whole communities come together for the sake of one family. The house is always full of tradesmen all willing to give up their time and a day’s wages to help someone who needs it.  There are reams and reams of people on hand supporting Nick Knowles and the team to make the types of adaptions and improvements that will make life more manageable and less challenging for the family involved.  It’s not so that they can be on TV, most people are rarely in shot for more than a few seconds, and it’s not to advertise their businesses – the BBC won’t allow that so even branded work shirts aren’t shown.  No, it’s simply to come together, to help someone who needs it.  At a time when there is so much hate and fear in the world, isn’t it great to see love like that?  To see people doing good things for others, just because.


Imagine if real life were like that?  Imagine if such things didn’t just happen on the TV?


Our house isn’t really geared up for Hugh’s needs.  It’s a bungalow which is great as I don’t have to lift him up and down the stairs, but I do have to drag his wheelchair up and down the front step every day.  His bedroom door is wide enough to get his wheelchair into, so I don’t have to carry him too far to get him to bed, but he can’t go anywhere beyond the living room.  The doorway into the kitchen is too narrow to fit his chair through.  Recently his increase in seizures have meant that now, more than ever, I can’t turn my back on him.  Making dinner involves me parking his chair by the kitchen door and popping backwards and forwards to check on him, or putting him to bed and watching him on the video monitor.  Hanging out the washing is all but impossible if Hugh is home.  I can’t get him into the conservatory either and the only way to get Hugh into the garden is out the front door (down the step) and up the side of the house.  For a boy that loves being outside, he spends precious little time in the garden. 


We need to make some changes.  We need a new entrance into the side of the house where we can get decent ramped access without losing all our parking space on the drive.  We need a large kitchen/dining area where all the family, including Hugh and his enormous bean bag, can be together while I’m preparing dinner.  We need level access out into the garden so that Hugh can come out and in as he pleases. 

Digging for treasure.

We need a Big Build.


It turns out, you don’t need Nick Knowles and TV cameras after all though. 

You just need some friends. 

Some good friends.

Really good friends. 


The last few weekends and a fair few evenings have seen our garden packed with a rabble of likely lads all doing their bit to make life better for us, for Hugh.  The skilled and the slightly-less-skilled-but-keen have worked tirelessly digging footings, pouring cement, ripping out the existing conservatory, laying bricks and shifting barrowload after barrowload of rubble to the skip at the front of the house.  It hasn’t looked easy, especially not in this blistering heat, and all they’ve needed in return is few cups of tea, a sandwich here and there and the odd can of beer or 3.

Sean getting stuck in.

It was humbling to look out, that first Saturday morning at 7.30 and see them all there, ready to help.  Giving up their Saturday morning lie-ins (should they be so lucky), their weekends with their own children, for us.  It is by no means a small task they have undertaken and I know that some days have been particularly hard work.  Yet undeterred they return, after a full day’s work or on their days off to build a better life for Hugh.


Never too young to learn a skill!
The difference this will make to our lives, once complete, will be huge.  The simple pleasure of being able to bring Hugh out into the garden when the sun is shining can’t be underestimated.  Being able to bring him easily into the house, without dragging a muddy wheelchair into his bedroom or the living room will be lovely.  I can’t quite convey in words how much this means to me, to us as a family.  I get teary-eyed and a little choked up trying to explain how simply amazing this is and how lucky I feel to have people in our lives that would do this for us.  We are truly blessed.


One of the lads joked that I’d have to make a DIY SOS style speech when it was all complete.  So here’s my speech now, because I’ve no doubt I’ll be sick of the sight of you all (and you of me, and each other) by the time it’s finished. 


Thank you.

Thank you to those who have already spent far too many hours here and to all of you who will be in the coming weeks and months.

From the bottom of our hearts thank you. 




Who needs Nick Knowles anyway?