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.

Friday, 31 October 2014

LSCIC

What does LSCIC stand for? 
London spinal cord injury centre

Why I have I titled it that?
Because Andy is here- on a four week assessment period of his communication, swallowing and respiratory functions. HIP HIP HOORAY!

How did we get here?

Well, there is no short story to this so get yourself a cuppa and settle down.

So, we were all pootling along in a pattern of visiting Andy, getting on with work and home life and Andy getting on with his thing.  We haven't been 100% happy with Andy's routine at his unit and all 3 of us ( me and his parents) felt he wasn't being challenged enough with physio, OT or SALT input and we were all unhappy with Andy's diet, having gone to purée only. (He wasn't even allowed his chocolate buttons because they aren't puréed)

Andy had a review in October with all the heads of depts and the neurological oversight for the unit. His parents went with him as I was at work. The meeting was completely not what we wanted to hear, with nothing positive to take away from it and this was followed up by a letter confirming what was said. So in essence we have sought a second opinion. This has been done by speaking with people I know and have made contact with since Andy's operation. Those people have then spoke to people they know and put them in my direction and we chatted etc etc. BUT behind the scenes somebody was working for us, hugely it has to be said, and organised with all relevant depts a four week stay at the London spinal cord injury centre at Stanmore hospital in London.

I was phoned on Friday 24th October and given this proposition with the question 'what did I think, would it work for us?' Heck YES was my response!!  She was pleased I'd said yes as everything had been organised already so I had a said no there would have been a few upset people!!!

So I went to see Andy and tell him, bless him, he sometimes doesn't know how to respond to things because of the lack of speech and being so used to things happening to him and at him rather thanwith him so he just shrugged his shoulders and kinda looked like he was saying, 'whatever you think darling',which was good cos I'd already said 'YES'

The whole timing has been good as I'm on annual leave for half term so I haven't had to sort work but  the children and I with my parents were on holiday in Oswestry from the 25th so had different juggling to do which involved making sure my parents were happy to look after kids whilst I went to London  to support Andy on the Monday coming back on the Wednesday morning as my dad was going home on the Wednesday morning. The plan was coming together.................

Except........

Monday turned up but transport didn't.  I received a phone call Monday at 9:30am to say thereappeared to be an issue at Stanmore- I was already an hour into my journey so I pulled off at a retail estate, made a few phone calls and the problem seemed resolved. Good to go, again.

Except..........

They couldn't get hold of transport- but surely transport was booked Friday??

I waited in said retail park seeing this OPPORTUNITY for Andy slipping away. Stanmore had said they couldn't hold the bed past Tuesday morning, they needed to know Andy would be on his way. Devastated doesn't cover it. By 2pm on Monday transport seemed booked and so I carried on my way to London, slowly and extremely tiredly. I arrived at my cousin's house at 6:30 absolutely shatteredand on edge. 
Tuesday morning I was still edgy, phoning Andy's parents far to early and far to often to see if the ambulance had arrived. Once I knew he was on his way I phoned carer far to often to see their progress but finally at midday he was in London with me and it was a beautiful moment!! About an hour later it was an entirely chaotic moment as everyone who is going to work with Andy descended on us to say 'HI' but what a moment to behold, all these people seemed so excited we were there, they explained all the things that were going to happen over the next couple of days. 

Andy is currently in the intensive care unit, this is standard practise, and he should move next week up to the SCI centre. It is upsetting for Andy though as he has gone back to 'basics', ie all monitored up, in hospital clothing etc.  I keep reminding him of the bigger picture..........

Continued in another post to make it slightly easier to read. Haha.