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?

Tuesday, 5 July 2016

The Next Step - Vagus Nerve Stimulation

Hugh's epilepsy has been a major factor in his life for as long as I can remember. His first obvious seizure happened at around 10 months but it's highly likely he was having seizures before this; he was already undergoing investigations for epilepsy due to the fact he was losing skills and regressing in some areas of his development and his brain MRI had flagged up that seizures would be highly likely. Truth be told, I suspect he had his first epileptic seizure in the womb, although I didn't know that was what it was at the time. 

Hugh's had 5 or 6 EEGs, two brain MRIs and tried numerous anti-epileptic drugs with limited degrees of success. I've lost count of the number of ambulance rides he's had- somewhere between 20 and 40 I'd guess, and nights spent in hospital must be well into triple figures. He's stopped breathing more times than I'd care to remember; I stopped counting the amount of times I'd resuscitated him when we hit 100 a few years back. Yes, epilepsy has certainly been a huge and unwelcome factor in Hugh's life.

In hospital in July 2011
Epilepsy is the thing that stops us living life to the full. It limits where we go and who we see. Hugh can't visit his family in Ireland because it's not safe to fly or get the ferry. He always needs to be within quick, almost immediate, access of trained medical support. Where we live we are less than 7 minutes in an ambulance from the hospital and the ambulance usually get to us in well under 10 minutes. That's the kind of immediate assistance Hugh needs. He hasn't got time for the aeroplane to land or the air ambulance to get him off a ferry.  Travelling abroad, even just across the Irish Sea, just isn't safe. For a while, Hugh couldn't even leave the house, his seizures were so frequent. It was safer to keep him at home, with quick access to the oxygen and his medication. As much as I'd love to say that Hugh's disabilities don't hold him back, that he lives life to the full, the truth is, his epilepsy significantly reduces his ability to get the most out of life. 

When the epilepsy diagnosis came, I assumed it would easily be controlled and that life would return to normal. Instead I discovered that 30% of people never control their epilepsy through drugs. After 6 or 7 different anti-epileptics, months and months of increasing, reducing and trying different combinations of those drugs, we admitted Hugh was in the category 'medically intractable'- the drugs don't work. 

We tried the ketogenic diet next and the success of this was astounding; within weeks his seizures drastically reduced. We started going out as a family again, we even managed a holiday to Wales, things that were impossible when his seizures were at their peak. During this time, we tried unsuccessfully to weanhim off the drug phenobarbital, but after a hospital admission where he stopped breathing for 16 minutes, we decided the risks weren't worth it and he remained on the diet and drug combined. 

Over the course of the three years that Hugh was on the ketogenic diet, more seizures started to creep in. The gap between the severe, life threatening not -breathing type remained a steady 3 months or so (sometimes slightly longer), but he began having daily seizures and clusters of seizures too, though these rarely required medical intervention. Yet we successfully weaned Hugh off the ketogenic diet in 2015 with no increase in his seizures.  

 Hugh still isn't completely seizure free though, so we have continued to look for alternatives. Three months between life threatening seizures isn’t great, but it is manageable and better than how we lived pre-ketogenic diet.  Plus the daily seizures appear to cause no real ill-effects, so far as we can tell. Lately, however, his seizures have become so severe that it is increasingly difficult to resuscitate him. In March he went for nearly 6 minutes without oxygen as a result. The potential consequences of this could have been devastating and we were exceptionally lucky that Hugh made a full recovery. It is a risk that we really do not want to face again.  Hugh’s neurologist agrees.

A brain MRI showed that he wasn't eligible for brain surgery since no single area of his brain is responsible for the seizures. So our only hope, Hugh’s final hope, is to try Vagus Nerve Stimulation. 

Vagus Nerve Stimulation (VNS) is a treatment for epilepsy where a small device is implanted under the skin below the left collar bone. This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.
It can take from a couple of months to two years after the VNS is implanted to notice a difference in seizure control. Sometimes, it doesn’t work at all. The benefits of having the VNS can include the following:
  • Fewer seizures
  • Less severe seizures
  • Improved quality of life             

We’ve been told about a third of patients see significant improvements, a third some improvement and a third it makes no difference at all.  Side effects, other than those associated with a general anaesthetic are apparently minimal and include intermittent hoarseness and difficulty swallowing while the device is sending electrical impulses.

Hugh has been approved for this treatment and is currently on a waiting list for surgery, which will be in approximately 4-6 months.   

We’ve heard lots of positive things about VNS and are hopeful that it will help Hugh, I don’t really want to consider the alternative.  In the meantime, we’ll just hope and pray that we can keep him safe and manage his seizures when they come. 

Monday, 20 June 2016

Father's Day in hospital- finding the positives

So, how was your Father's Day weekend?

Well ...
Ours involved our 6 year old being resuscitated 5 times, 4 of those we did ourselves. We had a 4am blue lighted ambulance trip and two nights in a high dependency unit.   Hugh had 3 lots of midazolam, 6 double doses of clobazam, lorazepam and a loading dose of phenytoin.  That's basically a whole heap of psychoactive drugs for a tiny 6 year old to take. 

So, probably not our best weekend.

But, you know, it could have been worse. 

snoozing in HDU
Hugh responded well to the recently increased dose of midazolam and whilst he unfortunately needed stronger drugs to stop them reoccurring, it did work to stop the individual seizure and get him breathing again. His last episode like this was back in March (coincidentally Mother's Day weekend).  He failed to respond to the midazolam then (hence the increase) and we were at a very real risk of losing him. So whilst I'd rather the seizures hadn't happened at all, I'm reassured to know the increased dose of midazolam does work. 

Hugh's 'big' seizures are rare and life threatening. Often the only outward sign is that he stops breathing. I think the seizure activity must affect the area of his brain that controls breathing or something. It's not that he physically can't breathe effectively, as with some types of seizure, it's that he completely stops breathing- l think his brain just doesn't tell him to breathe any more. We are as prepared for this as we can be- we have a bag and mask and oxygen which we use to breathe for him (like mouth to mouth but more effective and controlled) and we have the midazolam - the drug to stop the seizure and get him breathing by himself again. Sometimes though Hugh likes to mix things up a bit and instead of lying still and unresponsive- as you might expect from someone who's not breathing- he then starts to jerk and convulse as well. This makes trying to resuscitate him extremely difficult as it is very hard to keep his airway open and get the oxygen in. In hospital there is a team of people to help- one holds his head at an angle, one holds his shoulders still, one holds the mask in place and forces the air into his lungs. At home, alone, this isn't as simple. The events in March were particularly difficult, I wasn't able to resuscitate him by myself. I've since been taught to pin his head between my knees if this happens but I've lived in fear of this reoccurring. Last weekend however, Hugh lay floppy and lifeless during his seizure. And whilst it's not a position I enjoy seeing my son in, i am grateful that we were able to resuscitate him effectively and keep the oxygen pumping round his body. Whilst I know it won't always be this 'easy' (relatively speaking) I'm relieved to know it doesn't always have to be as hard as it was in March. 

Feeling brighter.
Hospital is often the last place we want to be, but sometimes it is the best place to be. When Hugh's seizure stopped at 4am on Friday morning, we debated whether to keep him at home. But we decided that he'd had too many seizures by this time and that he really needed to be in hospital. At 630am when his seizures started again, I was exceptionally grateful we'd made that call. He was exactly where he needed to be- with the highly trained staff of the high dependency unit; people who know him well and have stronger drugs than us at their disposal. Likewise, when he seemed to be recovering well and we were offered the opportunity to to go home, instead of grabbing it and running, we opted to stay an extra night to be on the safe side.  When the seizures returned and he needed more intravenous drugs to stop them, I was grateful we hadn't left hospital when we had the chance. Hugh was where he needed to be. 

Hugh was discharged on Sunday: Father's Day. Daddy's present was simply to have his son home from hospital. His special Father's Day dinner was a take-away pizza. 

It certainly wasn't the weekend we'd planned, nor one we'd hoped for. But Hugh is home, he is happy, he is well and for now, the seizures have stopped. That is certainly something to feel grateful for. 

Home at last.
You can catch up on what happened at the start of the weekend here