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.

Wednesday, 28 October 2015

Press release

Today we had a meeting with the building firm that are going to start our extension. It was the first time Andy and I met them but my dad and F-I-L have been working with them a lot to get to this point. They seemed really nice, professional and gave a good impression. They were also good enough to do a photoshoot with the local press to put in the paper so we can hopefully start a fundraising campaign.
The build is going to go ahead in 3 phases so we can cope financially with it. We have fundraised to the point of being able to dig foundations up to the slab point and we are starting the next fundraising drive to enable us to put up the walls and roofs, windows and doors. This also includes us selling up what was going to be our pension pot via property we bought 10 years ago. We hope this will give us a good boost but we certainly know we need your help too.
please find the link below which leads to the article in our local newspaper.

http://www.gloucestercitizen.co.uk/Friends-rally-round-Andy-home-tumour-operation/story-28071911-detail/story.html#

Sunday, 18 October 2015

London, again!

So Andy has been in London for the first 2 weeks of October.  He was picked up by hospital transport and I drove up behind him towing a trailer with his power chair in it! (The ambulance could only take one chair, so he went in his manual chair), It took about 3 hours to get up to London because we all hit traffic on the motorway.
Once there Andy was settled in to a side room which we were all pleased about because of the amount of stuff he had with him. Andy's PA's were with him as per usual which was good because they kept continuity for him. I stayed up til Monday late so I could also be around for the formalities.

Monday consisted of meeting the Doctors, Physio, OT & SALT teams and discussing goals that Andy wanted to set and working out what was possible to look at in those 2 weeks. 

BUT........

Andy had been brewing a bad chest the previous week which had required lots of chest management and then on the Monday, after a chest X-ray, Andy was diagnosed with a chest infection which saw him so fatigued he ended up on a week long bed rest!!
He did have therapy during that week including seeing Sarah (SALT) who did a lot of assessments with regards to Andy eating without his orthotic brace and also drinking. It turns out that eating with the brace IS what he needs to do and it also turns out that drinking is something Andy is NOT quite ready for yet. 
The second week was better for Andy in that his chest was better, he got in his chair more and had a hydrotherapy session too! 

But the best part was our trip to the O2 to see Michael McIntyre perform on his UK comedy tour. We had excellent seats on a viewing platform that was on the top of the first tier, so not up in the ceiling or an additional afterthought but intentionally sat so we could see the show. We had tea first with our friends who were also going at a restaurant there and then got settled in. As we entered security, airport style, I did wonder what they would do with our bags during bag check and the 'no fluids' rule but fortunately we got let in with no concerns! 
We then returned to the hospital and the staff got Andy back to bed and I mooched back to my cousin's house.

Saturday, 3 October 2015

Properly parenting.

I've mentioned on here before how the girls have stayed overnight one at a time with their dad, partly from want and partly because of necessity on my part. Well between us we decided that Andy would have one daughter each weekend, alternating which one goes each weekend. This means that since the end of August Andy has been 'properly parenting'

What do I mean by that, hasn't he always been a 'proper parent'?

Well, NO, he hasn't. 
Firstly spending 18months in hospitals/care institutes is not at all conducive to parenting. I never allowed the children to think he wasn't parenting and there were times that I did agree with him and therefore they didn't have that chocolate bar they wanted from the vending machine or whatever, so that they knew we worked together. But often times I had to make decisions myself because as I was on the frontline I had to deal with it regardless of what he might have thought.
Secondly, not being able to speak to his children (I use the word speak as opposed to communicate) was not conducive to parenting either. I always actively encouraged them to talk him using his megabee board or lip-reading but it took a lot of effort on my part, his part and their part to make conversation and he certainly couldn't, with any ease, give them instruction or orders - they could always choose to ignore him or 'misunderstand' him, they are kids after all - so I couldn't and didn't leave them alone with him for any length of time.
Thirdly, being paralysed neck down is............ Actually fairly irrelevant to his ability to parent. (You weren't expecting that!!) Besides anything else that s our life and so we have to work around that little issue!!

The children have obviously maintained contact with Andy and have visited him at all the hospitals he's been in and they visit him at the bungalow regularly. We've done day trips together too but because I'm always there Andy isn't solely responsible for the children. But one day was Lauren was staying over Friday - Saturday and I'd taken the other two out in town on our bikes and we were having a really nice time and didn't want to interrupt it by going to collect Lauren ( that's sounds harsh, I know!) so I rang Andy and we chatted and between the three of us we agreed Lauren would stay overnight another night and it's gone from there really. Andy really enjoys it and the girls do too, although they do admit they get bored sometimes when waiting for Andy to be ready but that's not always a bad thing! 
So he has to make sure the girls eat, sleep, complete homework etc as well as some 'caring' responsibilities, such as putting the telly on the right channel, itching his face, doing some of his therapies or getting the PA's if he needs help. 
For me, it gives me a space that I don't get during the week with all three at home, and it gives the children a breather from each other to and gives Andy the responsibility and purpose he needs.

The company that look after Andy pride themselves in being a 'can do' company and so are keen to see him achieving what he wants to and are enabling him to do that by working alongside me and him with him having the children over to stay and supporting him to do activities with the children. The last time Andy had Katie he took her bowling at tenpin, I'd booked the taxi for him and so he, Katie and a PA went in the taxi and the other PA followed in his car to go there and back again. Both PA's should really travel with Andy just in case but this would then result in him not being able to access any of the taxis, so by following behind they are being supportive of Andy's desires within the remit they have to ensure his health and welfare. ( health and welfare is far more than being physically present at the end of the shift but that's another story!)
Andy was able to actually bowl the ball by using the bowling ramp and they had a good time, he wasn't that far off Katie's score by the end! 

It's new, and old, territory for us all but it's good and another step in the right direction for us all.