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.

Saturday, 30 April 2016

MOT time for Andy.

Because Andy was rehabbed at the London spinal cord injury centre at Stanmore he is a patient for life there now and gets given a review bi-annually (currently, though it may go to annually in the future). 

On Thursday it was time for this review, which starts at 12:30, which is a considerate time for someone with his type of injury though he has 2 hour travel time which means leaving at 10am allowing for traffic but this means Andy starting his personal care at 7am ish. I do feel a bit bad because I can kinda swan around if I wanted though I didn't have the luxury of this as there were issues with the kitchen that I needed to sort out as well as the school run and washing to hang out. In fact I ended up leaving later than I wanted too and I didn't have to go through what Andy does!!

Andy arrived on time in London and started off with a medical chat with his consultant's registrar and the liaison nurse, essentially its like an MOT but for humans!
Then a visit with the psychologist, physiotherapist and occupational therapist. Then another quick stop with the liaison nurse and reintegration manager before finishing at 4pm and then phoning for transport to come pick Andy up. 
Transport arrived at 16:10pm, impressed and relieved for Andy. Andy didn't get home until 19:15 and promptly went to bed, chiefly to get out of the wheelchair. 

One of the best things to come out the review is being able to ask for a ring-fenced bed for Andy again for him to focus on some goals. This would include ensuring his orthotic brace fits properly once it's been re-cast, potentially looking at whether Andy can swallow liquids safely ( in conjunction with our local hospital doing a videofluoroscopy & FEES and giving it to London SALT to study) and training staff to support Andy to use a hydro pool - our friends have a hydrotherapy pool that is for medical purposes for their children and it's set up to enable Andy to be able to use it too, which is something our friends are keen to see happen.

Whenever we go up to London for appointments I always feel safe there, it's somewhere where I know that they have Andy's best interests at heart, it's where I know that we can ask to try things and nobody will say a flat-out 'no' but would see how we could try it out whilst keeping Andy safe. I'm forever grateful for Stanmore and for what they have done for Andy and In turn what they have done for our family.

Wednesday, 20 April 2016

Practical joker.

One day last week Andy's nurse manager came by with a CPR training mannequin specifically for people with a tracheostomy. It is used for training support workers in the complex care of a person requiring a ventilator and everything that goes with it. This mannequin is a full sized male adult that has been called Mork but apparently can also be turned into 'Mindy!'

Anyway, when we arrived to see Andy he was sat in the kitchen in his manual chair, which I was annoyed about, but the kids hadn't noticed and went straight in to talk to him, except 'him' turned out to be mannequin Mork dressed up exactly as Andy would be and Andy was waiting in the lounge, in on the joke as much as the staff!

K├ítie's reaction was by far the funniest as she jumped out of her skin with fright as she was trying to tell her dad something! 

It turned out that Andy, his key-worker and nurse had been pranking the staff for a couple days, telling them Andy had a friend staying overnight or that he wasn't feeling well and had been in bed all day. It worked a treat and most staff were quite freaked by Mork and we all had a good laugh!
I like the fact the company have a sense of humour! 

Andy/ Mork.

Monday, 4 April 2016

Birthday weekend!!

The weekend of the fundraiser I had booked myself, the kids and a friend and her daughter for a weekend away at Burnham on Sea which is about an hours drive away. We went down Friday late afternoon and came back Saturday for the concert and to see Andy for my birthday too and then went back down Saturday night. 
After the choir, we had lunch in town, which was interesting with 8 people in the group at 1pm on a Saturday in town. It was accompanied by the usual stares that someone in a wheelchair seems to have to get accustomed to, but I hadn't noticed, partly because my back was turned on the group but also because I'm not all that observant anyway, thankfully:) It didn't seem to put Andy off being in town, I suspect he has really broad shoulders - he lives by the saying 'easy to please, hard to offend'

After lunch we went and watched a friend playing water-polo for Cheltenham Town at the leisure centre, with ringside seats and then went back to Andy's for presents before we headed back down to Burnham. It was a really lovely day, very special.

On the Sunday Andy came down to Burnham and we went to the beach and got Andy on to the seawall. We nearly got him on the beach but got scuppered by the dusty sand but in the future a couple of good sized bits of cardboard placed on the sand would get him on. It was actually very exciting to find a really accessible section of the coast whereby we could get Andy close to the action and not have him as a bystander on the pavement just watching. Admittedly it wasn't as close as i'd like but I know what to do if and when we go there again. We had fish and chips on the seawall and afterwards we went and played on the 2p machines, which is Andy's favourite pastime, he's certainly very good at it. 

I said to the staff "i'll call you when we need you" and let them go and sit down somewhere as it's a bit weird to have 2 people traipsing after you and for them also it's a bit weird following someone around, a bit stalker-ish. I don't know where they went but when i phoned they were nearby and we all just meet up again. it's becoming a good arrangement, in that we get family time together and the staff know that I know what I'm looking for to keep Andy safe and they get to be able to do their job, which is enabling Andy to live as independent life as possible, whilst keeping him safe from harm. The kids are also brilliant with looking out for him for example Nathan knows his dad has to speak after every mouthful and you can hear him saying to Andy "say something please" or asking if he needs a suction or any help, and then he goes and gets help or just hollers for a staff member!

Andy went home about 5:30pm, getting in around 7pm and very exhausted i think. The following week though he ended up on antibiotics for an infection so we must have over-done it. The fault lays squarely at my door though because whenever I get the van from London I just want to get the most out of it and end up doing loads and loads so once we get our own van that will solve itself  hopefully because then i'll know we can go out whenever........... but equally I might end up wanting to be out too often because we have our own transport.............hmmm

Fundraiser pictures.

Pictures from the choir performance!

Sunday, 3 April 2016

Rock choir fundraiser

So we had the fundraiser that was mentioned in the previous post and it was A-M-A-Z-I-N-G!
The choir sang beautifully,

There were lots of people around and, in particular, there were lots of people who stayed to watch, 

There was lots of support from friends and family who came to watch but also to help distribute leaflets and hold the money buckets.

And the best bit, of course, was having Andy there! 

The choir sang for 45 minutes it's a few solo performances, one being from our good friend Val who'd organised the performance. She sang her solo just as Andy arrived so she did say she was a bit more nervous then but she did well though! 
As Val knew it was mine and my sister's birthday she must have said something to the choirmaster as the choir sang 'Happy Birthday' to us, which was exciting, that's the 2nd time I've had a choir sing for my birthday as two years ago Andy organised, with my sister, a birthday choir performance in the hospital chapel whilst he was still being cared for in ICU, and whilst he was fully vented and couldn't talk! 
After they had finished and Val was wrapping it up, Andy said 'thank you' to the gathered crowd which made me so proud of him for being willing to do it and to be so confident whilst doing so.

The icing on the cake was that we raised over £700!