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, 29 August 2016

Andy in London. Again.

Andy went up to London the 11th July which was 2 weeks after moving home. He was feeling unsettled by it having only got home and then we were sending him away again! He went up in hospital transport at 7am, infact the London transport were so keen they arrived on Saturday to take him to the hospital๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜†!

The purpose of the visit was to have his chest brace fitted properly. But whilst there he had other things looked into too. He had adjustments made to his chair that help him drive better and he had good sessions with his SALT lady. 
One of his biggest achievements whilst there was being off the ventilator for over 100 hours straight and coping really well with it. This was done with a view to see whether there is any chance of weaning off the ventilator overnight as well as at daytime. The good news is that he is on a reduced nighttime ventilation schedule. The staff in London want Andy to take spirometer readings daily to check his vital capacity and so long as it's over 1.5L each time he can have reduced ventilation. So far so good, and after Andy's done a month of readings or so we will send them to London and they will decide whether to reduce his ventilation hours further. 
In practice this means he is vented from 2-7am. The staff put the vent on at 2am, which doesn't usually interrupt either of us sleep wise, which has meant that we can chat to each other when we want to and settle down when we want to rather than because Andy actually can't speak.

I took the children up to London for the first weekend and we stayed with my friend in Hemel Hempstead again. We had the arrival of our 'Henry' van by then so we were able to go out with Andy in London and then we took our friends out to lunch at a pub in Hemel Hempstead. I collected Andy from London on the following Friday and then we started the whole process of living together again. 

Thursday, 18 August 2016

Settling in.

The first two weeks of Andy being home were really difficult for me, I had underestimated how hard I would find it and had an episode of "throwing my toys out the pram" for the week. I then decided it was a good idea for me to take a couple of weeks off work and get my head round it all.

So why the difficulties, especially as we have the same care team as from the bungalow. Well, for 2 1/2 years it's been me and the kids at home and home was a place where I could step away from Andy's disability, a place where I could be me away from hospitals and residential care settings, a place where I could relax, stop thinking about what was going on all around me, a safe place, my sanctuary, the one thing that hadn't changed.

AND THEN, the builders came and moved in and for a while it's was fine because the house was still intact until I changed the whole plan -almost- and we knocked out walls and doors and then the builders moved indoors to my safe place.

AND THEN, we all decided that the children would have bedroom makeovers as I was moving downstairs eventually, so that involved a huge change around of everyone's rooms and me eventually sleeping in the lounge!

AND THEN, as moving day came nearer Andy's stuff started arriving and I started seeing how much space his stuff would need and how much it would takeover the house.

AND THEN, joyously, Andy moved home and a rolling rota of 14 people moved in with us too. And it all became too much for me. I came home from work to find the house full of people, heating on, like it was the tropics and what appeared to be general chaos. I felt like nothing was mine any more and I didn't have control over my own home anymore, it wasn't my sanctuary  anymore, where I could watch what I wanted on tv and when I wanted as there was Andy to consider now and two staff members who were trying to stay out of our way but ended up in the only free space that was mine. Whilst I was polite and not out and out horrible, I was miserable and obviously stressed out. I took two weeks leave at work to enable me to make the changes I needed to at home and to try and rest and re-group.

It did help me and I gained a bit of perspective etc and then the 2nd week of my leave Andy went to London for 2 weeks! More on that later.

ANDY IS HOME!

ANDY IS HOME (as the title suggests)

Andy has been home for 7 weeks now - 5 proper weeks as he spent 2 weeks in London again.

Andy's OT had booked hospital transport to take him home for 5pm which meant he had to be ready to go from 3pm and he was actually ready to go from midday. Whilst he waited out at the bungalow I was busy preparing the house and putting stuff in places and generally making it ready for him to come home.
I collected Nathan from school, the girls came home from school and then we waited. I'd organised a welcome home party with family members and a group of friends who'd been instrumental in all the aspects of getting us to this point and they started arriving at around 5:30 onwards. And we waited.

Food was cooked and served and sat on the side, and we waited. Eventually we started eating at 7pm as it was getting a bit weird looking at food and waiting for the guest of honour. But we continued waiting.
In the meantime his key-worker rang the transport company to find out what was going on and was on-hold for 45 minutes, and we continued waiting. At about 7:30 we decided to go to Andy's instead to have a welcome home party and as we were all leaving I had a message to say Andy was just getting in the ambulance so we all hurriedly turned back home and waited for a bit more.
Eventually at about 8pm Andy arrived home. A long day for all of us involved but we celebrated nonetheless!

 The girls and their cousins on look-out duty.
 Andy having just arrived home.
 Andy and me and balloons.
Andy with the children