Thursday, 20 October 2016

The Big Build - Disaster Strikes

Morrisons cafĂ© appears to be my go-to place when I'm on the verge of a nervous breakdown, I think. Having come close to bursting into tears again after discovering not only woodworm but damp in the house I figured it was best to get away and find some perspective. Ordinarily I wouldn't leave the house with Hugh the day after being discharged from hospital but the sound of the circular saw screeching as it ripped through the floorboards in my bedroom was upsetting him too much, as well as setting my teeth on edge, so we left in a hurry. As it is, he is sat opposite me snoozing contentedly while his pump feeds him a milky lunch and I munch on a cheese and onion toastie. 

The platitudes that I usually console myself with "it'll all be worth it in the end" and "at least we found it now and not when the job was finished" aren't having the desired effect and I had to strongly suppress the urge to scream. In truth, I'm feeling a little hard done by. This never happens on DIY SOS. 

So, in an effort to redress the balance and stop myself sulking like a child, I'm working on some reasons to be cheerful and I'll return home with renewed positivity. 


1.    Our carpenter. Most of the people helping on this Big Build are friends we've known for years. Stephen grew up with most of them. Some of these friendships have lasted 40 years (yes he really is THAT old!). What they're doing is amazing but they're fuelled by a lifetime of friendship. Not so for Neil- he only entered our lives after the reception teacher encouraged our sons to be friends 3 years ago. Despite knowing us such a relatively short time, he has worked tirelessly to get our house back to a more inhabitable condition. He's there now, while I'm sulking in Morrisons. He's there more than I am, I reckon. And whilst he might take the piss out of me for not making enough cups of tea and he can be quite annoying after a few beers, we really couldn't have done this without him. 

2.    Hugh's home from hospital and pretty healthy considering. Sometimes when Hugh's had a bad run of seizures he can be groggy and off colour for days. Instead he's full of beans and really happy. It means I can leave the house with him quite easily. And when we need to evacuate the house for a few hours while woodworm treatment commences tomorrow, this won't be an issue as he's ready to go back to school anyway. 
Happy to be home from hospital
3.    So far (I really shouldn't jinx it like this) but Sean's and Hugh's bedrooms have remained unaffected. Hugh's bedroom is his sanctuary. His favourite place in the world is his bed. It's because of this we've resisted moving out to my mum’s while the building work is carried out.  (Well that and the fact it would be a nightmare to get the kids to school in the morning from her house). He can still chill out and listen to his music and watch his bubble tube and his flashing disco lights. Having this space keeps him calm, keeps him happy. And I'm grateful for that.

4.    Sean's room has bunk beds and the bottom can either be a double bed or a settee. Lately it's been serving as our living room/dining room. We eat our dinner in there, Sean does his homework in there and we play cards in the evening in there. Yes, cards!!! We have no TV at the moment as the aerial is disconnected. It's a bit like living in the olden days! It's been quite fun actually and Sean has loved learning new card games. Tonight, with no floorboards in our bedroom, we can pull it out into a double bed and we'll still have somewhere to sleep. That's something to be thankful for. 
Does this count as 'sitting down to eat together as a family'?

5.    There's a curry in the slow cooker and wine in the fridge. Thursday evening sorted. 

So, positive mental attitude resurrected, I'm able to face the mess and the chaos that awaits.
I think. 

Or maybe not ... *goes off to cry*

Monday, 17 October 2016

Seizure Watch

If Seizure Watch in our house was graded like a terrorist threat level then we've been upgraded from substantial to critical- meaning an attack is highly likely and imminent. Hugh's had two severe seizures needing resuscitation since he woke this morning. That's twice today he's stopped breathing completely, twice today he's gone blue, twice we've had to breathe for him and pump him full of drugs until the seizure stopped and he took a breath for himself. I'm expecting another before morning. In fact I'm sat here waiting for it. Literally. I'm sat by his bed, watching and waiting. The midazolam is out, the phone is charged and ready to call 999, the bag and mask is by his head, connected to the oxygen, he's hooked up to the sats monitor. The second he stops breathing, I'm ready to pounce. I'll probably doze in the chair next to his bed if I can so I'm wearing clothes comfortable enough to sleep in but nothing obviously pyjama-y in case I'm whisked off in the ambulance at 2am. The hospital bag is packed and waiting at the front door. Contingency plans for getting his brother Sean to school in the morning have been put in place. Yes, we're on high alert; the threat level is critical. 

And how is Hugh behaving in all of this? You might imagine he looks poorly or is sleepy or has a temperature or something. But no, right now he is rolling around his bed laughing. For all intents and purposes he looks fine. And he is fine. Until suddenly, he's not. 

And that's the difficult thing with his seizures- there's no rhyme or reason or warning to them. This morning he woke happy and delighted in lying there punching daddy in the face (I too found this quite amusing). 

And then he stopped breathing.
Just like that. 

Perfectly happy one second to dying in front of our eyes the next. And yes I realise that sounds a bit melodramatic but it's true. He stops breathing. Completely. He won't start again unless the seizure stops. The seizure won't stop by itself. Each time this happens Hugh is completely reliant on us to breathe for him, to get drugs into him to stop the seizure; to save his life.

And after? He sleeps. A combination of the powerful drugs and the after effects of the seizure knock him out. His breathing becomes shallow and laboured and he is deathly pale. He remains limp  and incredibly still. Almost lifeless. Almost.

Today we drove home with him in that state. Debating whether country roads or a busy m6 motorway would be easier for an ambulance to get to us should we need it. I watched him like a hawk the whole way, barely daring to breathe myself. At least once home I know an ambulance can get to us quickly, I know the local hospital staff know him well. 

And when he wakes, it's like it never happened. His pupils might be a bit larger than normal and his limbs a bit floppier- the after effects of his heavy drug use- but otherwise he's fine. 

Reassuringly fine. 

Absolutely fine. 

Until he's not. 

Edited to add: Shortly after finishing this post the seizure we were expecting arrived. We resuscitated him again and called the ambulance. We're currently sat in A&E waiting to be admitted while Hugh recovers from this latest episode.

Tuesday, 11 October 2016

The Big Build for Hugh - The Half Way Point

Considering that the building work has been going on since July, I think it's quite impressive that yesterday was the first day that it all just felt a bit too much and I had to resist the urge to cry. Without heating or hot water, with nowhere to sit and the air still pretty dusty, I gave up and decided to sit in Morrisons where I could have a cup of tea in the warmth before I summoned up the energy to face the mess. You'll be pleased to know I didn't burst into tears and now with the heating and water back on, the house (relatively) clean and sat in bed with a glass of wine (there really is nowhere else to sit) it doesn't seem so bad after all. So I thought I'd take the time to update you on how the #BigBuild4Hugh has gone so far. 
I'm sure there was a wall here last week

Our friends have continued to amaze me, turning up weekend after weekend and/or evening after evening to help out. I'm fairly certain some of them are spending more time at my house than their own. The actual structure of the house went up in less than the 9 days that I joked about (I suggested that since Nick Knowles and the DIY SOS team could do it in 9 days then there was no reason these guys couldn't). It wasn't consecutive days, but counting full days worked, I think it was up in about 7 days- from digging footings to laying the last bricks. Pretty impressive. Although it left just 2 days for the rest of the work of my 9-day target was to be met.

The roof was next. From where I stood (at the kettle making tea mostly/or on the settee drinking it perhaps) it looked like a rather soul destroying job: a lot of hard work and pain staking effort went into that roof. It's up, it has two of the four roof lanterns in and it is watertight. (Bar the big holes for the roof lanterns of course). The windows are in, the external doors are nearly in and the scaffolding is down. 

It's all looking pretty exciting

Last weekend was all about knocking down the walls and this was the bit I was dreading from the start. The existing kitchen was knocked down along with most of one side of the house. I hid away for that bit- we spent the day with my cousin and the night at my mums. I figured the dust would be no good for Hugh's chest or my asthma. They've cleverly boarded up the section of the house we're living in so that we're not really exposed to the dust on the building site side of the house. There was some, of course, but it hasn't taken me too long to clear it up. 

We're currently living in our bedrooms, with the bathroom and a tiny makeshift kitchen with a sink, a fridge, a microwave and a washing machine. This was more than I expected to be honest- I'm pretty chuffed to still have access to my washing machine. I've no cooker though so I'm having to make meals using a slow cooker and an electric steamer, which isn't too difficult but means I have to be organised. There's been the odd takeaway or 10 of course too. Storage is an issue and it's a bit like a game of Tetris trying to find space for everything. Hugh's many chairs being the biggest obstacles to work around. To take a shower you need to move one of them into the hall, which invariably means moving two others into bedrooms. Honestly... the boy has a LOT of chairs. We eat our dinner on the bottom bunk of Sean's bed and can watch TV there but once he's in bed at 730 there's nowhere else to sit. Friends popped over at the weekend and with the lack of seating and the lack of heating, we ended up having to light a fire in the garden and sit around that instead! 

Leaking pipes can make attractive water features ...
There's been a few low points- the rain coming into the kitchen at 2am, discovering a burst water pipe, the heating packing up. But actually we've been pretty lucky. It would have been much worse to find the water leak when the job was finished. And any time it feels a bit too cold or a bit too messy or a bit too cluttered, I remind myself that it will all be worth it in the end. And it really, really will. 

The things I can't wait for…
*Having somewhere to store all of Hugh's chairs,
*Being able to wheel him up a ramp rather than dragging him up the front step,
*Having storage for all of his feeding equipment,
*Having a fancy new kitchen (not really for Hugh that bit is it?),
*Having access into the garden for Hugh,
*Having enough space in the kitchen that me and the two boys can all be in there at the same time,
*Throwing a massive party to celebrate its completion!!!

Speaking of which, to celebrate the half-way-ish stage and to say a big thank you to everyone that has worked so hard on the build, we decided to throw a bit of a party. Through amazing good fortune, this coincided with a marketing campaign Magners were running locally where they turn up at parties with a load of cider. A few tweets later and the van arrived.  Not only they did bring enough cider to keep a lot of builders very happy but they brought an Xbox with FIFA and set that up in the garden along with a photo booth, a football table and a table for playing 'beer pong' as well. To borrow a saying from another well-known alcoholic beverage 'if Magners did parties...' It really was brilliant, there was a great atmosphere and it was such a funny day- the highlights being the dizzy penalties and watching the kids playing beer pong - with cherryade!!  The completion party has a lot to live up to!
L-R: The family looking silly, Just some of the people responsible for the mess the fabulous extension, With Henry & Chris (the party men from Magners) and the very last case of cider!