Monday, 20 March 2017

Looking for Patterns

When Hugh was little we tried to work out why his seizures were happening, what was causing them. Sometimes we attributed them to illness- an underlying chest infection, brewing chicken pox, sickness and diarrhoea. Other times it seemed to be pain related- teething seemed to bring them on. But often, and increasingly so as he got older, there was no obvious trigger, nothing we could pinpoint that was the cause. They just seemed to happen. So instead we looked for patterns, attempting to find order, to give ourselves a sense of control over something which we really had no control over at all.

Recently our pattern appeared to be about every three months Hugh would have a big-not-breathing seizure. He'd invariably be hospitalised and more often than not require IV drugs to stop the pattern. We'd have 3 bad days- he'd need resuscitating anywhere between 6 and 20 times over that 3 day period. He'd be out of sorts for a couple of days, extra sleepy or with lots of other types of seizures- ones where he was at least breathing but were still really horrible to watch. Sometimes the gap between his not breathing episodes would be longer than three months- we'd be delighted of course, but I'd be looking out for them from three months on, half waiting for them to happen. 

There was some comfort in that partial predictability. It wasn't clockwork, far from it, but I sort of accepted that every three months or so we'd hit a bad patch. Maybe comfort isn't quite the right word, but after a hospital admission, once the horrors had dissipated, I'd feel like we'd be in a 'safe' period. The E monster had been, we'd defeated him thankfully, he'd be back of course, but for now we could live again without his shadow looming over us. 

Lately though, that's gone. There is no pattern to cling to and therefore no 'safer' period. There's no rhyme or reason to them at all. In the last six months, the longest gap between big seizures has been 8 weeks, the shortest 10 days. They've happened in the morning, mid afternoon and in the dead of night. Sometimes he's awake, sometimes he's asleep. There's even been completely isolated incidents which haven't progressed into 3 day affairs- something that hasn't happened for years. Sometimes they've even stopped by themselves- he's still needed resuscitating but they've stopped before the rescue medication was given- he's not done that since he was about 1! 

Hugh had a big seizure this morning. He wasn't breathing for about 4 minutes. When the midazolam wore off and he woke up he seemed fine. 18 hours later and there's been no more. Under the old rules I know he would be in hospital by now or we'd be heading there later tonight. The hospital bag is packed and ready for that scenario, just in case. But he's been really, really well today- happy, smiling, no sign at all that anything has happened and going by recent incidents, this could be a completely isolated event. In which case, there's actually no reason why he can't go back to school tomorrow. 

So I've got his hospital bag ready and his school uniform out. 

And I genuinely have no idea which way it will go. 

Saturday, 25 February 2017

The Big Build For Hugh …the final hurdles

It’s been a while since I updated you all on the #BigBuild4Hugh so I thought I’d update you and show you a few sneaky pictures.

The run up to Christmas was fraught with anxiety.  It really was all hands on deck to try and
Even Elvis the Elf had to pull his weight
get the place liveable in time for our family who were arriving from Ireland.  It was only with the help of some good friends that we managed to have light in the kitchen – until that point, we’d been using floodlights! I had visions of us sitting down to Christmas dinner like that.  Thankfully, come Christmas day, we had a working oven, lights, a fridge and somewhere to sit and eat.

The last of the woodwork was completed just after the Christmas holidays and I’m now happy to say that we have a fully functional house that, all bar a few finishing touches, is more or less finished.  There’s still a few wires hanging that need switches and thanks to a mix up with the circuits, we can no longer use the hoist in the bathroom, so Hugh can’t have a bath – fingers crossed we’ll get that fixed soon.  There’s a bit of plastering to be done and a fair bit of painting, but all in all, it’s looking good and we’re delighted.

The difference it has made to our lives is immeasurable.  In no particular order (OK maybe the cupboards ARE my favourite), here’s the best things about the new house…

The cupboard space
I remember watching an episode of DIY SOS and they made a designated space for the family to mix the child’s tube feeds.  I desperately wanted that.  Our kitchen was tiny, there was barely any surface space and mixing feeds was a nightmare.  Storing them even more so.  I kept the milk feeds under the bed or piled up in the bathroom.  The plastic containers and giving sets (the tubes used to pump the milk into Hugh’s stomach) were kept in plastic containers in plastic sheds in the garden.  The reason for the double layer of plastic was the fact snails eat cardboard! Who knew?  I discovered holes in the boxes containing Hugh’s medical supplies and after investigation found that the snails had been feasting on it.  After that, each month I would open the 16 boxes and decant them into plastic boxes, taking inside only what I could reasonably fit in my kitchen. Which wasn’t much! Regularly, you’d find Mr. M and I doing ‘rock, paper, scissors’ to see whose turn it was to traipse up the garden in the cold/rain/snow/mud to get supplies for the night after we’d unexpectedly run out.  Fun times!

And the equipment – the huge chairs, of which there are many, littered the house and the boot of the car!  It was like a game of tetris trying to find space to put one chair after another.  Hugh has a wheelchair for outside, a three-wheeler offroad wheelchair for the woods and muddy football pitches, an indoor supported seat, an enormous bean bag (his comfy arm chair so to speak – no one wants to sit bolt upright all the time) and a shower chair. These are the essentials.  Some the size of a big arm chair (I’m looking at you P Pod).  Imagine trying to find space to put 5 extra arm chairs in your house. (Here’s how – 1 in the bathroom, 1 in the boot of the car, 2 in the living room, 1 in the hall/bedroom – depending on whether you needed to get past it/use the bedroom). 

So, that was before … now -I have designated cupboards for all those things!  I have space for all the chairs and all the feeding equipment.  I don’t have to go into the garden to get Hugh’s feed ready and I don’t have to store wheelchairs permenantly in my car. It’s actually life changing.  I know that sounds a bit melodramatic, but honestly, the extra space is invaluable.  I even posted a facebook status update with photos of my cupboards (see below) and the response was amazing – so many people struggling to find space for all the extra equipment that comes with having a disabled child. 

Ok, so maybe the cupboards are my favourite… but look at them… what’s not to love?

  
The Family Room
Wasn’t really sure what to call it, but that’s what the architect referred to in his plans.  It’s basically a kitchen/dining/living area – a big open plan space (with an island!) that has enough space to comfortably move Hugh around in the biggest of his chairs, without having to move furniture to do so.  We can put Hugh’s bean bag between the arm chairs so he sits next to us while we watch TV together, rather than him stuck out on the edge on his own.  He can be playing on his mat on the floor and I can make the dinner whilst watching him and whilst listening to his brother read.  Hugh couldn’t fit into our kitchen before so I was forever running in and out to check on him and I regularly made Sean sit on the floor in the kitchen to do his reading so I could get on with dinner.  On Christmas morning, Hugh had a bit of a funny turn, he was unresponsive and dazed and kept having prolonged absence seizures.  We suspected he was heading for a bout of his bad seizures – the not breathing, call an ambulance kind – so we put his hospital bag by the door and had the oxygen and medicine we needed ready.  The thing was, it was Christmas, and dinner still needed to be cooked – we were due a houseful in a few hours.  In the last house, this would have been very problematic, Hugh can stop breathing instantly without warning, so we watch him closely at the best of times, but when we have warnings like this you literally can’t leave his side, just in case.  Thankfully, because of the size of the kitchen, I was able to just park him up beside me in his bean bag while I carried on getting dinner ready.  Sean could have Daddy all to himself to play his new Christmas Xbox games – the last thing we wanted was to spoil his Christmas.  As it happened Hugh snapped out of it and was fine (maybe due to the VNS -who knows? A post for another day) but there’s been lots of similar occasions since that have really made me appreciate so much space in one room.



Hugh’s bedroom
We’ve moved the front door to the extended part at the side of the house and by knocking down a wall, Hugh’s bedroom has gained the space from the hallway, where the original door was.  I didn’t think it would make much difference to be honest but it seemed a better use of space than making another cupboard.  Plus, he’s getting bigger and his hospital style bed is going to get bigger so we knew we’d probably need a bit more room in the long run. The difference it has made is fab though.  I can now fit a chair in there so I can sit in with him when he’s unwell, or his carer can have a place to sit when she’s looking after him overnight (she previously sat in the living room with a video monitor).  There is space to bring the wheelchair into the room, beside the bed so I can hoist (rather than lift) him in and out – my back is very grateful for that!  The hoist has been there for a while, but unless we moved all the furniture out of his room we couldn’t get a chair anywhere near it.  Now we can fit his cupboards and a wheelchair in!  It also means he can play with his toys or look at his bubble tube and fibre optics whilst in his bean bag, rather than lying in his bed.  It means Hugh can actually play in his bedroom without having to go to bed to do so.





There’s more, much more, that I love about it (the fact that the kitchen is a real party room, I have an island and a dishwasher, the floors are the same throughout which makes it so much easier to move Hugh about) but I don’t want to bore you, or to sound like I’m bragging. 

We’ve been lucky, very lucky, to have such amazing friends working on this with us, but it’s still cost way more than we expected, particularly as we hit a few unexpected problems along the way.  The next step is to get access into the house (we’ve got a temporary ramp that’s thankfully saving my back at the moment) and access into the garden for Hugh.  A wonderful friend of ours is running the London Marathon to raise money to help make that happen and we’re hopeful we can start work on that late spring/early summer.  You can find his Just Giving page here: https://www.justgiving.com/crowdfunding/HappyLittleHugh



At one point, it felt like this building project would never end, and whilst people kept telling me it would be worth it, it was very hard to see beyond that eating dinner on a bottom bunk bed stage!  Now though, as we’re nearing the finish line, I realise just how quickly all this has been achieved and I’ll be eternally grateful to the people that went above and beyond to make that happen for us; for Hugh.  It has, and will continue  to make, an enormous difference to all our lives.  





I'm linking this with The Accessibility Stories via The Inclusive Home


AccessibilityStories

Friday, 17 February 2017

Dear Doctor

Dear Medical Professional,

You will ask about his medical history,
And I will repeat the story I have told 100 times or more,
The details fine tuned to the essentials I know you need:
He was born full term,
He has a 7 year old brother who is fit and well,
He is allergic to penicillin. 

You will ask me what happened,
And I will answer:
He is 6 years old.
He wasn't breathing for 7 minutes.
I gave him mouth to mouth.

I will hand over a careful typed piece of A4 paper.
It will tell you his hospital number,
The things he is allergic to, 
A list of medications and doses.
You will take it and smile.
You'll tell me I make your job easier.

I will stand calm,
And in control. 

You see my demeanour, 
my hospital bags packed and ready,
And you say,
You've done this before.
I'll nod and say many times.

But remember this;

That 6 year old is my baby.

That boy with the oxygen,
And the wires,
And the tubes,
Is my son.

I watched him turn blue.

The first time, 
The fifth time, 
The hundred and fifty fifth time... 
It was still my baby.

My answers may be more polished,
I may appear more organised and calm.

But he is still my baby.

Sometimes I lie my head on the bed beside him in A&E and sob huge silent tears onto the starched, white sheets.

Sometimes my hands shake so much, I hold them tight between my knees while I'm answering your questions.

Sometimes I hold my breath just to stop myself screaming, my throat burning from the effort of holding it in, a single tear escaping and betraying me. 

So please doctor, registrar, paramedic, nurse... don't be fooled by my tough exterior.

Thursday, 9 February 2017

I'd Move Heaven And Earth To Help You

I would move heaven and earth for you,
If I could.

I'd walk a thousand miles for you,
If it would help.

I'd pray to God,
To any god,
To every god,
If I thought it would make a difference. 

I'd go to hell and back for you.


I've been to hell and back with you.

I've begged God to save you,
To help me,
To stop this.

I've walked miles of hospital corridors,
Paced the house in the early hours,
Ran until I couldn't breathe.
 
For you, 
With you, 
Because of you.


And yet;
Here we are...