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.

Sunday, 8 February 2015

Another grand day out!

It was agreed with the team in London to do another outing with Andy as part of all our learning process. Andy and I decided ( maybe more of me, perhaps) to go the orbit in the Olympic park and to go out for lunch at the Westfield shopping centre. Going out to lunch is something nearly all of us takes for granted but for Andy it's been 17 months since he has eaten in an establishment outside of hospital so it was exciting to be given the opportunity. Previously Andy was on a strict "no eating outside of the care centre" regime, but Stanmore are keen to support Andy in his wish to eat food and thus have given him the 'tools' to manage the risks associated with his wishes to eat normally.

As I was already up in London and my parents were coming up on the Friday to visit my gran, I persuaded them to come up a day earlier with our kids thus allowing me to do my earlier visiting in the week. Our grouping though become huge, we consisted of Andy and myself, Lauren, Katie and Nathan, my parents, and 4 support workers- 2 were from the hospital and 2 were from the agency that support Andy and as they were coming up anyways we figured it would be good for us all to work together. Andy went I a MPV and the children, me and grandparents went on the tube!! 

It took an hour to travel the tube to Stratford and poor Lauren lost phone signal most the way which was difficult for her as she had no internet 😂

We found a big enough seating area on the food hall and ordered various different food items, Andy ordered a jacket potato with chicken tikka in it. It looked lovely but was on the spicier end of tikka but Andy said he'd have it, but one bite in and the cough I suspected was coming he soon changed his mind- he has had to go to mild curry now because the spice causes him to cough!! Apart from that though he ate really well and enjoyed being out and about. 

We then went up the tower in the lift, enjoyed the views and the heat of the space as weather had gone really bitter and Andy was complaining of being cold, if Andy feels the cold then he really is cold as he has altered sensations so we kept him near the fans to warm up. When we left Katie, my dad and me decided to walk down the tower instead of taking the lift- all 455 steprs😀

All in all, it was a good afternoon out, very tiring for Andy and for me and, I suspect for my parents too. We learned some valuable lessons going forward too, one of them being that we probably can't wrap Andy up too warm!

 

Monday, 2 February 2015

Opportunity.


This week has been a busy week for me and for Andy. I went up to London on the Monday which I don't normally do, as I had a meeting with an advisor from the charity Aspire. It was very useful and the advisor is helping me get stuff sorted but it has shown me that Andy's long wait to get into Stanmore doesn't just affect his rehab but the whole of his and our lives, things that should of happened months ago haven't simply because I haven't known about it or had the advice before, but in Stanmore that advice turns up weekly or more often.

Tuesday was a big day for us both. Andy's new care agency started 'carer training' which will last until Stanmore sign them off as competent to support/care for Andy. Tuesday was the day I went to parliament to give my evidence towards the APPG (all party parliamentary group). The evidence was all about our story, about the difficulties we've had in getting a bed for Andy. It was an amazing experience, to be stood at the Houses of Parliament, to walk through all that history. I feel that I looked like a typical tourist!!
When I got to the right room it was set up in a horseshoe shape for the panel and a table opposite them for us, the witnesses. As I spoke my story I felt like I had a captive audience, they were listening to what I had to say. They asked questions afterwards, one of them being 
"What has been the hardest part of all this?" 
My answer was the lack of opportunity being given to Andy, of feeling that he was being written off especially by the neuro centre. Then I was able to tell them all the positives that have happened in London. 
I hope that being able to show Andy's progress since being in London will prove the importance of spinal cord injury centres and the need for a timely entrance into the system.

Wednesday was another day meeting new carers from the care agency, so far we've seen 4 team members, 2 of whom are qualified nurses! 

Thursday- a fab day, but I shall post that later😃