Andy's Story

Andy Blagden is a young man, married to Charlotte and has 3 children; Lauren, Katie and Nathan. (The children were 12, 9 & 2.5 years old at the time of diagnosis).
Andy was diagnosed with a tumour in his spinal cord in June 2013. The tumour was at spinal level Cervical 3 going down to Thoracic 2 (C3-T2). This is incredibly high up the neck and the only option was to operate. This in itself was not without risk but after a 15-16 hour operation the tumour had been removed. The outlook was good. Then Andy became ill....
Early September Andy contracted pneumonia and then sepsis, Andy's kidneys then failed and he was put on constant dialysis for a month and required a blood transfusion during this time.
Andy came through all this but he now lives with the consequences; paralysed from the shoulders down and unable to breathe without ventilatory support, this is his ongoing story of rehabilitation with the goal of getting back home to his family and his future.

Monday, 27 June 2016

Last night, but NOT of the promsπŸ˜†

So it's my last night at home on my own, parenting/grown-up wise. Tomorrow I shall be inundated with adults!! 
Andy is moving back to the family home and it's been a very long process to get here to this point but we finally have. The last couple weeks have seen an intense burst of decorating by myself and Andy's parents. In fact they spent all of last week decorating various rooms to bring it up to a suitable point and we now only have a few jobs left that can be done with Andy and care team in-situ. I must admit that I'm done in decorating wise but in a few weeks time we'll need to get on it again so that the house doesn't remain unfinished as is the want to do! 

The last couple days have involved a lot of cleaning, putting away, finishing off DIY, trekking down to ikea again and again and putting a monumental amount of cardboard in my trailer ready to recycle. I've become unafraid now of asking for what I want doing, if someone offers, ( side note; don't offer unless you do mean it cos I'll have you doing stuff!!) so I've had a friend running to and from Andy's getting and sorting for me, others painting 'miss coats' or cleaning wet rooms but it has really helped me out and I'm confident tomorrow I will be ready to celebrate Andy's arrival home and start our new family life. By the way, we are starting as we mean to go on so on Andy's first weekend home I'm off to my cousin's wedding about 120 miles away and leaving Andy with the girls and then in July he's hopefully going to London for 1 or 2 weeks as an inpatient again! No rest for the wicked as they sayπŸ˜†πŸ˜†

Tuesday, 21 June 2016

Mixed bag of feelings

I thought I'd share some of what I'm feeling now we are counting down the days. Firstly, yes I'm excited. Very excited. Especially when I talk to Andy and realise I can do that whenever I like from next week. 
I'm exhausted, very exhausted. I had to buy fuel today for my works car and I know that I know the PIN number for the card to pay for fuel but when it came to it I couldn't remember the order of the numbers for what felt like eternity. I got it right but I did feel like a right plonka, that's how tired I am and it's hard to get excited when you're so tired.
I'm nervous about sharing my home, our home, with people constantly. And not just the shift staff but the clinical staff that swing by every few days to see how everything's going.
I'm feeling 'precious' about my belongings. I don't want to show people how my new oven, hob, washing machine works. I don't want them using all my equipment. It's not because I don't trust them but when 14 different people have access to your stuff it feels like it's not yours anymore. 
When I was growing up my parents room was mostly off-limits and entering it when they weren't in it felt like an invasion of privacy, and we would never have let friends in their room, ever. I don't have that anymore, we both don't. Andy obviously needs that support but I don't and yet it still is foisted on me. I feel like there is no 'safe' space for me, no where to hide for a few minutes to catch a breath or cry or go on Facebook without anyone around.

My emotions got the better of me at work today and I got upset at something I wouldn't normally get bothered by, I'm a bit like on a knife edge. Wobbling, teetering on the brink. Give it a couple weeks and I'll hit my stride again but in the meantime treat me gently.

Monday, 20 June 2016

More exciting, exciting, exciting!

Andy comes under the care of the local speech and language therapy who liaise with Stanmore in relation to speaking and swallowing. Recently we've had appointments with them to look at Andy's ability to swallow liquid. Andy has been on a 'nil by mouth' regime for about 2 years because he's aspirated on fluids and not known about it and then had chest infections as a consequence, but it's very much been one of his goals to be able to drink safely.

Since being in London and working with his brilliant SALT lady he has improved massively with his eating to a point that it was agreed to do examinations to see what potential there was to start fluids. The study in October at his stay in London showed he was ok and but not safe enough to be allowed liquids at home but he was referred to the local centre for another exam 6 months later. Well that six months came in June and Andy was sent for a videofluroscopy, which is essentially an X-ray whilst he's drinking. It went well and we had the results today, which are that Andy can start drinking albeit in a controlled manner for now. He is allowed no more that 10 sips in one go and 4/5 times a day he can do that. He can only have water for all but one of the sips sessions but that other one he can have what he wants, hurrah hurrah bring on that cider!

This is such a momentous occasion for us, for Andy in particular as these pictures show.

How do you ever recover from being told you will never;

1) Eat again.
2) Speak again.
3) Breathe again.
4) Move again.
5) Drink again.

Well, I never told him 'Never' I told him it'd be harder than we ever thought, but with perseverance from him in trying all the time and a family prepared to fight Andy has proved these statements wrong.
Andy eats almost anything, speaks clearly and for longer and longer, breathes unaided in the daytime, has started to learn to write his name or initial his voting form and feed himself (with support from his staff) and FINALLY has the go-ahead to drink.

None of these are perfect and yet all of it is perfect. I'm so proud of him.

Thursday, 9 June 2016

Exciting exciting exciting!!!!!

So I have a really exciting announcement and that is that Andy is moving home on the 27th June. It'll be 2 years and 10months exactly that Andy walked out the house for his operation, little knowing the devastating and life changing consequences of that. Now he'll be rolling back in with 2 constant companions and far too much equipment to fit in his jeans pockets!! ( he had a motto, probably as most men do, of 'keys, wallet & phone' to leave the house with). 

Despite the devastation and life-changing affects for Andy, and us all, we are all excited at the prospect of Andy moving home and of getting our new vehicle shortly too and finally beginning our 'new normal'

Below are two photos, first one is just before Andy left for the operation and the bottom one is Andy just before returning from the operation.

Andy and children in July 2013, our last holiday before Andy's operation.

 Andy and the children at Tenpin bowling  - June 2016.

Monday, 6 June 2016

Barbara bus time again!

So we had the Barbara bus again for 2 weeks, primarily so I could get Andy over to the Jazz evening, which was a super-duper success by the way- raising about £4000πŸ˜€πŸ˜€πŸ˜€.

I should've written this nearer the time as then I would be able to remember more of what we did together but, hey-Ho! 
We did go to Oldbury Court in Bristol with Nathan. There is a lovely play area and walking areas so we took Nathan in the afternoon, school giving permission for him to have the afternoon off, and had a good play together, ice-cream, wanders through a stream, skimming stones and playing pooh sticks together. It was good to be able to do these things. After getting back into Gloucester Andy came for tea at home and was able to have a good nose around too and also test out that the layout actually works, which it does thankfully!!

We had the Jazz evening on the Friday, Andy got there before me but I was running around doing extra things that I probably shouldn't have tried to do but that's me!
Saturday Andy and I went to a concert at our church which was really good to be able to do together, to be normal together. To hold hands together.
Tuesday Andy had an orthotics appt in London which was to recast the brace. It was nice to be able to be in control of our own transport there and back which made for a better day for Andy. To recast a trunk brace for someone with no movement is an interesting experience for the staff involved though I suspect for Andy it borders on torture. Here's how it's done; Andy was hoisted onto a 'patient trolley', these are thinner than a normal bed - challenge number 1. Then 'pat-slided' across to the trolley for the plastering. He was plastered on his front first, laid on back, then turned over on to his front to plaster the back. It took about 6 of us to turn and I was given the job of holding Andy's head in place for the turn and the duration of the plastering. And being mindful of his trachy too. It turns out heads weigh a LOT and my arms were killing afterwards. Andy was then turned back on to his back, cleaned up, dressed, slid onto to other trolley and then hoisted into his chair. quite the process!
Wednesday involved a wheelchair centre appt which he was ABLE to attend because we had our own transport and didn't have to rely on Arriva transport who have the art of being late down to a tee, in fact the only reason Andy had this appt was because the previous appt was cancelled by Arriva because they were running too late but they failed to tell us they'd cancelled it. The incredibly frustrating thing about this is Andy has to be ready for Arriva 2 HOURS ahead of his appt time as they can collect from that time onwards. Except when they don't! The appt was good and changes were made that should hopefully benefit Andy in learning to control the chair better.

On the Saturday, we went tenpin bowling as a family. The kids were really excited about going and enjoyed the whole time there. They got really good scores but so did Andy and I was pleased with mine too. Andy bowls by using the bowling ramp lined up specially and I held his elbow and he then pushes the ball down. It worked well. The kids had slush puppies to drink and let Andy taste the flavour by putting a drip on his lips. The staff had coffee in the cafe, which gave us family-time together, these moments being precious as they are so hard to sort out otherwise.

Sunday the bus was returned to London in the morning and Nathan and I the. Hung out at battersea park children's zoo before getting the train back to Gloucester where my mum collected us and took us a home.
Hopefully this is the last time I shall need to borrow the bus as we should have our vehicle in the middle of July. I shall miss doing things in London as a result of going up to collect it but I shan't miss the actual driving up/ train,or bussing up to collect/return it though.