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, 7 June 2017

More improvements




Andy has been practising feeding himself with his staff supporting his hand and elbow, well the other day Andy did it himself with no support and managed to get some food in too, so the next thing is for us to find suitable cutlery that food will stay on better. 

Still improving despite being 3 yrs post injury.

Holidays!

With a hop, skip and a big jump I'm skipping through January, February and March and going to blog about the Easter holidays.

Its taken a bit of time to get me to this point to write about our main family holiday, mainly because it was a calamitous affair and made me somewhat stressed out and upset, but as things are happening in the near future I need to blog about too I thought i'd better get over myself and write about it.

Last year my Dad had suggested a family holiday with us, my parents and my two sisters and their families. He wanted to go to a one of the sites his timeshare has but would need me to say it was suitable for Andy as he would be sacrificing some of his weeks to do this holiday, so my Mum and I (and Nathan) did a reccy visit up to The Lakes staying in Penrith. The visit went well and the site and accommodation looked suitable so we said it would be fine and we should go for it.


Nathan having breakfast at our B & B on our reccy!

Ourselves and the care team went into planning mode, asking which staff would like to do a working holiday, working out the logistics of getting staff 5hrs north, and the need for them to also work a 12 hr shift, and where they would stay also (which happened to be on site with us) and his key worker wrote lists of things Andy would need, packed it all up in boxes ready to go in the van.
   
Meanwhile the van, which was not even a year old, was making a humming sound like the police sirens in the distance. I booked it into the garage for the week after we got back because they had nothing sooner and because it was still working fine, apart from this noise. WELL........... on the day of departure Andy went in the van with his staff and Lauren & I took my Dad's car and a trailer (we always have to have the trailer on holiday as we always have too much stuff just for a car)  (Nathan and Katie went with other relatives) and they followed behind me...... or at least I thought they were but the nearer I got to the motorway the more I couldn't see them so Lauren phoned them and they said "We've broken down and are in Morrisons car park!".
   
 We went to meet up with them and, to cut a long story short, it was agreed that Lauren, myself and the trailer with all his equipment would go on ahead and they would follow behind once Motability/RAC  had sorted the problem, except RAC couldn't solve the problem on the roadside and they were taking the van to the garage on EASTER SATURDAY!
Renault would then take a look at it on Tuesday, due to it being bank holidays etc. Meanwhile the rest of us were at least half way up the country and so we carried on going as there was no other solution.
     
We also had the slight problem the Andy's night staff were already there in The Lakes so they had to turn around and go home but rendez-vous with us at a motorway services to collect Andy's vital equipment.
     
The next 3 days were spent making various and numerous phone calls to try to get a replacement vehicle, as per the agreement with Motability, for Andy. Not as easy as it sounds and with each day that passed there was becoming less point in Andy making the trip at all BUT by late Tuesday, with interventions from a lady at Motability we had assurances of a vehicle being delivered to Andy on Wednesday.
   
Our care company, who were trying very hard to accommodate all the changes being placed on them too got everything sorted with the new van, Andy and the night staff and he was on the road by 3pm. At 6pm I got a phone call to say they were stuck in traffic on the motorway and had been for a bit so I googled for traffic updates and found out that an accident further up had shut the motorway in both directions and unfortunately for Andy he was positioned after the last open junction and the accident meaning he couldn't get off the motorway, and the suggested re-opening of the M6 was midnight!!
   
Andy arrived on Wednesday just before midnight and the day staff and night staff unpacked everything and then night staff had to set up all the equipment that had been brought up with Andy, so it was near on 1:30am before Andy and I could go to sleep. Andy was up relatively early the next day, and in good spirits, so we decided to make the most of the day and went to Lake Windermere on a boat trip, mooching round Bowness on Windermere, and then going back to Ambleside. overnight another piece of equipment broke, as well as the ventilator having played up, so it was decided that Andy would go home Friday morning. So our long-awaited family holiday over the Easter period lasted  for 1 1/2 days, in real terms!.























Sunday, 9 April 2017

It's been a while......... Part 2.


Another reason I haven't been updating on here, or anywhere else, is that I haven't had the emotional and mental strength to do much more than survive.

I think how I'm feeling is the combination of 3 yrs of fighting the system and therefore being in a constant state of survival mode combined with fighting to get the treatment that Andy deserved and should've been given from the beginning, that should've been in place without me having to constantly ask for it. I was talking with a professional the other day about Andy's time in Bristol, that he still can't remember, and as I listed off all the difficulties he had I realised how much trauma we've been through and how much of that I (probably) haven't processed.

Such as; 

Difficulty with waking up from sedation and being put in an induced coma and then woken up again, a couple of times.

Developing pneumonia.

Developing severe sepsis, being told he might not live.

Having a tracheostomy done to support his breathing.

Having a feeding tube fitted as a long term measure to support his hydration and nutrition.

Having his kidneys fail and requiring 24hr dialysis.

Uncertainty about whether his liver was failing and was he going into multi-organ failure.

Having a lumber puncture done.

Being called down to HDU because of a cardiac arrest due to a mucus plug and being told I shouldn't drive myself down if at all possible.

To name but a few.

Andy doesn't remember this but I do. 
Then there was the fight to get a spinal injury bed. 
Then there was his placement at The Dean and the fight there to still get a spinal bed. 
Then he got a bed in London and very nearly lost it due to incompetencies on certain professionals part.
Then the visiting London every weekend with and without children.
Then organising a placement in Gloucester whilst we made an extension.
Then living on a building site. 
Then learning to be a family with a care staff in place.
Then fighting DWP for his disability benefits.

It's actually quite ridiculous when you start reading it in list form.

So I feel like I should be fine and dandy but the reality is I'm not 100% and I'm having good days and bad days. Days where I feel like I can do loads and days where I don't. 

It's been a while...........

It's been a long time since I wrote on here, for several reasons. 

One of those reasons was BIRTHDAYS! 

It's been Lauren's 16th birthday, Katie's 13th birthday, me and my twin sister's 40th birthday along with my Mum, Mother-in-law and Father-in-law all having birthdays in February, March and early April. (And Mother's Day too!)

At the beginning of March, my sister and I went away to North Wales for 5 days rest and peace. I've been in need of a time away for a while to get away from the constant busyness of life with complex disability and 3 kids. It was a good time away, we did what we wanted when we wanted with none of the usual constraints of our respective home lives.

I then had the next two weekends out with different friend groups celebrating my birthday with meals out and watching 'Beauty and the beast' at the cinema too.

The last weekend I spent with my other sister and Katie at her place in the New Forest and doing the 'Go Ape' course which was good fun, despite me realising my upper body strength is not as strong as it was the last time I did this!! 


Sunday, 22 January 2017

Some very exciting news indeed!!

In July Andy went to Stanmore for a inpatient stay to work on one of his goals: coming off the ventilator. 
At that time he was going on the ventilator at about midnight until 7:30am but when he was at Stanmore he was taken off the vent for 4 consecutive nights, on the 5th day he showed signs of fatigue that necessitated going back on the ventilator again. On the back of that though his respiratory team decided he could cope with 5 hours ventilation a night so long as he blew certain numbers on his spirometer machine, they then wanted his care team to record those numbers day and night and then send them up to London after a couple months.
So for the past couple months - we had a broken machine for a couple months too and had to wait for it to be repaired and the cogs of the NHS and CCG don't work particularly fast - Andy has been doing his spirometry twice daily, with consistent improvements in his readings, and just before Christmas we sent the results up to his physio in London who then looked at them and discussed them with the others and emailed us today to say that:

ANDY CAN HAVE ONE NIGHT A WEEK OF THE VENTILATOR!
(With stipulations attached obviously)

It may not sound much in the scheme of a week but, trust me, it's HUGE. It's proof that Andy's breathing is strengthening and that there is still room for improvement and progressionšŸ˜ƒ

Saturday, 3 December 2016

Possum

This post is about possums, no NOT Dame Edna Everage either!! (Hello possums!) but the possum environmental controls unit.

If you want to find out more then look at the website www.possum.co.uk but, in short, through the regional environmental controls department Andy is getting a primo+ unit which will be tailored to his wants and needs but will allow him to operate the television, telephone and lamps independently of anybody else. He will also get a pager system which means he can buzz for help rather than shouting until he's heard.

I can't tell you how I'm excited I am about it as it will finally get Andy on the road back to depending on himself, even if it is for 'little' things, such as choosing his TV channel, browsing the TV guide, choosing lighting levels or phoning people.  The environmental controls people will also look at controls that'll give Andy use of the computer once again. One of the most exciting things for me is the pager system which will mean that when Andy and I go out we can have approximately 300m distance between ourselves and the staff and still be able to page them if and when needed. A massive step on the road of independence. Whilst Andy may always need high levels of care every little thing he can do for himself is empowering for him and to him.

When the EC guys turned up there was an engineer and an OT, well it turned out the OT had worked alongside Andy's London OT and actually knew of him before she came, how bizarre is that!!

This is the type of unit that Andy will be getting, that will be able to clamp on to his wheelchair. He'll be using it with a click switch that he just needs to bang at the appropriate time to make it work.