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, 17 May 2015

Guilt.

People say to me ' it must be lovely having Andy so near now' and yes it absolutely is but one of the hardest things I find now Andy is in Gloucester is my division of time and my guilt about it. Essentially I feel like I'm failing everyone all round as I don't spend enough time with the children or enough time keeping house or enough time with Andy and never enough time for me. I'm writing this at 11pm and so tired my eyes are red!

Some of what I have to contend with, guilt wise, is:

3 children. Ages 14, 11 & 4. Need I say anymore on that!!? They all go to different educational establishments and whilst 2 of them are capable of getting there unaided I still have to chivvy them along in the mornings. (Mornings aren't my best time either!) There are different clubs to attend after school, various friends to go out with, which is brilliant for us both but not helpful when they sort their social lives and expect me to work around them! They are like any children and treat home as a hotel and wonder why I get annoyed at tripping over shoes, bags, etc etc. Lost favourite teddies.(youngest one specialises in that, fortunately not traumatised as yet), Their favourite moan is the turnaround time on the clothes washing- it's not easy washing for a family when you're never in to do it!
I then feel guilty at having 'fun' with the children but without Andy and I find it hard to plan a trip for them knowing full well he can't come, so then I try to balance it with 'over-visiting' to make up for it. I'm sure he knows it's not for lack of trying on my behalf but that doesn't change how I feel. I hate guilt, it's such an insidious emotion.

Work. I only do 2 days of paid work. 7 days mothering, 5 days of spousal support. I obviously support Andy all the time but usually go over 5 days a week as I'm working at my job for 2 days. 

Andy. I go and see him lots and when I'm not seeing him I'm chasing up stuff, thinking about stuff, talking to care team about stuff, in order to make his life better.

My home. My mum does a fab job at looking after my home, better than I do it has to be said, but then I'm never in long enough to look after it.


The hardest bit is that Andy wants us around and we want to be around but it's not the children's home, their stuff isn't there, their personal space isn't there, there are no spare rooms that they can go in to be quiet or alone or when they want to be out of the way. We also find the furthest we can go is about a quarter of a mile radius because of the manual chair and the kit Andy needs to go with him, makes it very difficult to go much further without a vehicle. The area is lovely for going for a walk or to the play park as well and Morrisons is a particular highlight these days!

It's brilliant he's there and far far better than hospital or The Dean but the other day I looked in the lounge and for a fleeting moment just thought "could he come home now and live in the lounge whilst we fundraise to build an extension and bring him home" and immediately I knew the answer was "no" but it would make everything just a teensy bit easier. If he were on the same premises.

Please take a look at our fundraising page www.buyandyabrick.com 

Tuesday, 5 May 2015

Weston super Mare

So, 2 weeks after discharge the easter holidays rolled round and as always the kids need and want entertaining. Whilst they love seeing their dad they do get bored as they don't have much of their stuff there and to go anywhere requires forward planning, sometimes it's a10minute plan to go to the local park or it requires days of planning, checking and checking again.

So about 2 weeks after discharge I had a bright idea: to go somewhere further than the end of our street by some method of transport!!

After a bit of thinking it was decided to go Weston-Super-Mare by train! 

The clinical team agreed it was do-able, so they looked at the clinical and safety aspects of this trip, I looked into train tickets and rang the accessibility team at great western trains and organised the help required. 
We were given a lift to the train station by a friend, making it with 30 seconds to spare!! ( he'd had an AD attack in the morning!) 
The train trip down was uneventful but enjoyable for us all and we got into weston in good spirits. We walked the 15 minutes to the seafront and were greeted with hoardes of day trippers as it was the first hot and sunny day of the year that was also school holidays. It was beautiful and felt really good to be out as a family, doing regular stuff. We had fish and chips on the seafront, bought buckets and spades and the kids dug a bit in the sand, went on the pier and pushed 2p's for a long long time- it turns out Andy is very good- and then called the ambulance because Andy's blood pressure dropped to around 75/50!  
All in a days trip!!!

The long and the short of it was that with the right action Andy was fine and we got on the train that was scheduled to be the 'B' plan and got home courtesy of the same friend again.
All in all a good day had and showed us what's possible!

Achievements

It's been 5 weeks since discharge and a lot has happened:

~ one visit to wheelchair services.
~ two visits to A&E.
~ numerous visits to the pharmacy.
~ numerous visits to Morrisons supermarket.
~ one day trip to Weston-Super-Mare.
~ one trustees meeting attended.
~ two trips to the pub.
~ three GP visits.
~ five motability vehicles tried and tested.
~ one BBQ at home with friends.
~ one trip to the local duck pond.
~ one post discharge check-up from London- with a to-do list!
~ one visit from the community physio.
~ one visit from friends for Sunday lunch.
~ one trip to church.
~ NUMEROUS evening meals as a family.

Not bad for a few weeks!!