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, 6 December 2014

What does a day in LSCIC look like for Andy?


Andy has been at LSCIC now for 5 weeks now and he is classed as being on a rehab bed, not an assessment bed.

What has he been doing in this time?

Well, his day starts around 8am with personal care.
 9am brings his physio in for chest management- this is aimed at reducing the 'gunk' sat on his lungs and strengthening them up as well. He also ROM (range of movement) physio to keep the limbs moving so they don't seize up, after all you can't put clothes on easily when you don't bend very well!! Ward rounds happen at this time too and the trachy team see him also.

Between 10am -1pm Andy will do VFB-vent free breathing. This involves sometimes just the nurse and other time the respiratory team will be involved or SALT. At the start of the VFB he blows into a spirometer to measure his VC (vital capacity- refers to the maximum amount of air the person is capable of expelling from their lungs after maximum inhalation, normally between 3-5litres.) and then he also does this at the end of the last VFB. Andy will do 2 or 3 VFB sessions a day. At the start of being here Andy's VC was 600ml and 5 weeks later he can achieve 1000ml. Excellent progress.

1pm often brings Sarah, the SALT lady. She is working with Andy with his swallow and communications. She often touches all over his face and throat and is quite 'hands on' with him. He has exercises to do to strengthen those muscles that haven't been used properly in over a year and she is starting food therapy with him with the aim of being able to eat for pleasure. This may seem a backward step because he was eating fully in GRH but as their investigations show his swallow tires easily and he silently aspirates, leading to those chest infections he seemed all to fond of. He also eats better off the vent, cuff down, than on because the airflow forces him to swallow more often!

3pm and Emma the OT comes to fetch him to go down the gym. For this he is sat in his powerchair (loaned) and drives down using hand controls. His skill in this area has improved massively and he isn't running people over as often but still needs more practise, as with anything. But he is getting there well and this should be something that becomes second nature to him.
Down in the gym Emma might be perceived to torture him with various machinery and what looks like a little electric shock making machine, but they have reasons behind them and seem to be producing results too.

4pm is a return to the unit and possibly seeing Sarah again, or anyone else who wants to say hello!
In between all this going on there is nursing care to ensure Andy's skin is cared for, Andy's meds are administered, bloods taken etc etc. It's never ending busyness for him but that in itself is good for him. 

Somewhere in all this his parents visit at the beginning of the week and I (his wife) visit at the end of the week. I tend to turn up on the ward and walk in whatever time (after 10am) despite the official visiting hours notice but Andy's parents are better behaved! 

Personally, after doing this for 15 months, I've learned to stand up for what I want to see or do, especially in regards to Andy but I do it respectfully and hopefully that then stands me in good stead with everyone. I feel here, in Stanmore, we are all working for the same thing- to see Andy achieve as much independence as possible and to be able to rejoin his family in the family home. I now have so much more hope to see that fulfilled and to that end can never thank Stanmore and its staff enough.

Sunday, 16 November 2014

Moving on up!


So, Andy spent 2 weeks on the ICU ward at Stanmore and during that time he was very busy with SALT, OT & physio input. The downside for Andy is that he is currently nil by mouth at the request of SALT. This is so that if there are complications during the 'cuff-down' time food won't be the cause. Andy picked up a chest infection the first weekend in ICU which I was devastated at because I thought it was caused by his saliva dripping down but thankfully it was a different reason and so the 'cuff-down' and speaking was continued. 

The 2nd week saw Emma, the OT, bring a power chair down for Andy and he was given the opportunity to wheel himself around ICU!! He did run into his consultant but the doc didn't seem to mind, too much.

On Monday 11th November Andy moved on upwards to the spinal unit, quite literally, as Stanmore is on a huge slope with ICU at the bottom and the spinal unit on the top, the porters had to run and push Andy's bed up else they would loose momentum and it would slide back down again!!
He has started 'vent-free' breathing and is doing well with it. Apart from the obvious reasons to wean him off the ventilator in the long-term, in the short term his ability to breath on his own for periods of time is reassuring should he become disconnected for any reason, it also facilitates easier transfers from bed to chair or for showering for example. But it presents 'talking' challenges, it's a LOT harder for him to talk without the vent on - in a way it's like talking whilst exercising! 

Talking on the vent is done differently to talking without a vent. Normally we talk on expiration of breath but on the vent Andy has to learn to talk with inspiration of breath, very difficult. I try it when I'm in my car on my own, to no avail!! Give it a go- it's interesting!

Andy is also being kept busy with the physio and OT people, all of whom are so lovely. His OT is entirely 'no nonsense' but very helpful with it. She seems to be on the case with getting equipment sorted for him to carry on his rehab back in Gloucester. (Whenever that is) They are all great!

On Saturday evening I rang the unit to let Andy know I'd arrived safely home. The nurse who answered was his nurse for the day and she said he'd had a lovely day, done well with his 'vent-free' breathing and was currently watching the football with other patients in the day room- I was so pleased as at his previous setting he never wanted to go into the day room with other patients nor was he encouraged to either. LSCIC is so good for Andy, please pray he can stay for as long as is needed to establish the important things of swallowing, eating and communication and the bonus things such as the movement that he has.

Ooooh, by the way, Andy has discovered that, with the help of a machine that takes the weight of a person's arms, he has a small amount of movement in his RIGHT arm as well as the left arm!!



Sunday, 9 November 2014

LSCIC part 2


So, I'm playing catch up again with myself! 
It's been a busy couple weeks for us all so test of my memory here. The first week Andy has seen the speech and language therapy team (SALT) who had a good fiddle with his face, feeling for all sorts of things, and asked him loads of questions about the sensation and feelings in and around his head and mouth. They put a camera up his nose and down into his throat to see what's going on. I was allowed in the room whilst it was going on and I have to say it's very interesting. I got to see his vocal chords and the epiglottis and we saw him swallowing his saliva and then later swallowing food as well.

Andy has a swallow- this is good!
Andy's swallow is weaker than it should be so he has exercises to do to strengthen it- this is also good!

In the afternoon Andy saw the respiratory specialist doctor who wanted to see his breathing ability, so he took Andy off his ventilator and we sat and watched and waited........................
And then Andy's body kicked in, and he started breathing for himself!! 

Again, his breathing is weak and he cannot do without his vent but there is a potential to wean off the ventilator for periods of time.

The doctor put a camera down Andy's windpipe and we had a look at his lungs and the condition of his trachea. The lungs are disgusting and explain why he needs lots of suctioning and has chest infection upon chest infection but also gives the physio things to work on with him. His trachea looked good considering the last 14months. Andy was given a new trachy with a different style cuff on it that is inflated with water instead of air which is softer on Andy's trachea, it also is easier and far more consistent to inflate and deflate. (More on that later)

The occupational therapist (OT) came in to see Andy and was upset at the state of Andy's hands and arms from a mobility and range of movement point of view- we knew they weren't getting any better despite our constant asking about it with the physios at Andy's unit. The OT did some stuff with his arms and at one point he moved his thumb, which she wasn't expecting him to do-she has no reason to expect him to at Andy's injury level either so she got very excited and I then told Andy to show her what he could do, so he did. The OT proclaimed his arm movements were 'stunning' and is excited to work with him on it.

That was the first two days!!!!!!!






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. 



















Friday, 29 August 2014

Summer holidays

It's been a few weeks since I blogged and that's mainly because 'The summer holidays' have happened and we've all been busy.
For the children, they've had various childcare arrangements which didn't always go down well with them as I think they feel pushed from pillar to post. Usually childcare would be covered by the two of us- I worked when Andy was at home and Andy worked when I was at home- so this year it's been hard having to find appropriate cover for a 3, 10 & 13 yr old and try to give the grandparents a break too. I got it covered with help from the school and so the girls went to an extended school, a holiday club and the camp that is run at the TRAC adventure centre (link on the blog).

Lauren also had a week away with a charity called CHICKS in Cornwall, it was her first holiday away from home with no-one that she knows, so she was nervous but it manifested itself by having a go at me for all the different childcare arrangements I'd had to organise. We eventually got this sorted out and Lauren went off on the Monday from Exeter Moto services and I didn't hear from her til I picked her up on Friday from Tiverton parkway- major traffic that meant I was 2 hours late and spent 7 hours travelling there and back!!
She had a really good time there and wanted to stay some more, which was very pleasing.

A friend who turned 70 this year decided to celebrate by doing a 70k bike ride through Somerset to raise funds for Andy.  As yet we don't know what we will need to put all the funds raised towards but it would be something like the house adaptation or an electric wheelchair that allows him to move himself where and when he wants too, these things are not cheap in any way so these fundraisers are much appreciated.

We all went to the rugby to see Gloucester play Munster at Kingsholm. It was fab getting Andy out and about and I always admire his bravery at deciding to go as I'm sure it would be easier for him emotionally to stay away from crowds but he does it and he makes me so proud. It was good to see Gloucester win and as both Andy and I have only ever been to rugby and football matches where our team wins i suggested we should tell them we are their lucky mascots and need free tickets to home games to ensure they win, he didn't agree. Mores the pity!!

This last week was spent in London with my cousin. We took the train from home to London on the Sunday and was met at Paddington by my cousin, we dumped our stuff at hers and went up to Notting hill to join in with the carnival. Man, that was an experience! Our group consisted of 4 children and 3 adults and trying to get through the crowds was crazy but we stayed together and made it back to my cousins house by about 8pm- long day!!
It was an action packed few days and it was good to take time out from home. It was especially nice to be able to focus on other things and to have adult conversation too!

But as always it was good to come back and see Andy and regale him with our stories and pictures and give him our gifts too, we then also had a little family gathering for my dad's birthday. We all had drinks and chocolate cake, Andy included. He ate the cake with no problems which is always a bonus as he shouldn't be able to eat anything!!

It has to be said I'm looking forward to school resuming which is on Tuesday for Katie, Wednesday for Nathan (Playgroup) and Thursday for Lauren and then we will find our routine again.
All in all the summer seems to have been kind to us, but now we get back to 'normal'. In the next few weeks Andy and I will be applying for Katie's senior school place and Nathan's infant school place- Wow!!

Friday, 1 August 2014

Stoke Mandeville

On Friday 18th July we were thrown a huge curveball- a place at Stoke Mandeville spinal injury unit is available, do you want it?

Wow about..... Time, yes we do want it!

So we get on with preparing ourselves for Andy to move there on the 4th August. No simple task when you have to re-organise work, 3 children's child are arrangements, my sleeping arrangements, Andy's clothing and stuff accrued etc etc.....

This week I received the news that the bed is currently not available  and they can't give me a date as to when it might be available. Andy is top of their list though so will get the next bed available. Devastated is probably an understatement! 
I thought I'd got off the emotional roller coaster but apparently not- it was a mere break to catch my breath!
Still we hang on in there, keep praying and trusting God for this whole situation- easier said than done!

Hopefully a post in the near future will contain the excitement of having moved!

My sister' wedding

On the 19th July my sister got married to her husband Will. They had the event at the adventure centre farm my parents are managers of in Newent. 
When we were in GRH we had tried to see if Andy could come out to the farm but they had said 'no way' ( obviously a lot nicer than that though !!) so there was a prospect Andy wouldn't make it to the wedding but with moving out of an acute unit Andy has had more chances to get out and about so that immediately boosted his chances. One of my concerns once moved to the Dean was that they wouldn't feel confident going out with Andy as he would be so new to them and it's not simply a case of just getting in the car and going but they were keen to get him there too so that is what we did.

Andy has had a lot to of with the farm in terms of working out there to help with the building of the site etc and it's where he runs Big man Little man with his friend, Hendrik. I was privately concerned that visiting the farm would be an emotionally painful experience for him and I suspect that it was, not only seeing family that he hasn't seen since before the operation but also seeing everything he loves about TRAC and knowing he can't do any of it at the moment. There's also the thoughts running through his head about what he looks like to others and being 'different' to everyone else. But, he is such a strong guy and he managed it so well and he enjoyed being there despite the circumstances

  I organised a taxi to take us and the firm that we used were really good, the vehicle design was one of the best I've seen- I keep scoping out adapted vehicles thinking about what we need and want- and so we set off with Andy, a staff member, and all the kit plus Nathan and me!

The wedding was a really well organised day, organised by my sister and brother-in-law themselves and as a family we enjoyed ourselves immensely. Sam, my sister, made a speech and mentioned about marriage being for life and through good and bad times, touching upon our situation, which as I sensed it coming I started to feel the tears coming and some friends all turned around and checked I was ok!! Andy wasn't there at that point, he had gone back to The Dean by then.

It was lovely to catch up with friends from way back and with family we don't see so often too.

Andy was absolutely shattered by 3 hours being there, so the taxi returned for him and I think he slept for quite a few hours after that! Andy's fatigue is one of the things I struggle with a lot because it's restrictive to all of us. His fatigue is not just sleepy tired but his muscles become unable to support him and his breathing can then become affected. SCI (spinal cord injury) isn't just about the spine not working it affects everything because the messages from the brain go through the spine and as in Andy's case the spine is affected high up so everything is affected. It rained horrendously during the day and as we moved from one place to another Andy got a bit wet as did the rest of us, we though were able to brush it off, sotospeak but Andy got shivery and needed his winter blanket covering him to warm up again.

Despite everything though we were a family at a family wedding and I appreciated and enjoyed every bit of the time I had with him there!!

My sisters' wedding



Wednesday, 16 July 2014

Making the news!!

 Here is an article the local paper ran just recently:


When dad-of-three Andy Blagden felt his right hand start to seize up in an odd way, he decided he had better go to see the doctor.

The 40-year-old, who attends the Christian City Church in Cheltenham, was shocked to be told he had a massive tumour attached to his spine which needed operating on immediately.

He underwent a 16 hour surgery to remove the growth – but despite the operation being a success, complications arose which left him fighting for his life.

Now he has lost nearly all movement from the neck down, can only breathe with the help of a 24-hour ventilator and is unable to speak.

Brave Andy is now coming to terms with his new physical limitations – but has vowed he will be there for his three kids, Lauren, 13, Katie, 10, and Nathan, three, as they grow up.

Friends from the church, in Hatherley Lane, have pitched in to help him and his family as they bid to raise up to £50,000 to fit their home in Tuffley, Gloucester, with the equipment he needs to move around.

His wife Charlotte Blagden said: “It has been incredibly difficult for Andy.

“But we are so grateful for the support we have been given from friends at the church.

“Without them I don’t know what we would have done.

“They have cooked us meals to keep us going, helped us with transport and also with our finances.

“We estimate it will cost between £30,000 and £50,000 to get the equipment we want for the house so he can get around.

“We want to give him the best quality of life we can.”

Andy was diagnosed with a tumour in his spinal cord in June last year and underwent the operation at Frenchay Hospital in Bristol in August.

As he was recuperating he contracted pneumonia, then sepsis, as well as kidney failure – a combination which nearly proved fatal.

But as it is he has been robbed of nearly all of the physical attributes he had before the procedure.

Although life is now very different for the former owner of a Gloucester-based pizza company, he is working hard on his rehabilitation in a bid to make any possible gains in movement.

“We have got faith that things will get better,” added Charlotte.

“When you’re faced with something like this you can either sink or swim.

“We’ve got three kids and we need to be strong for them, so we are swimming.”

A team of 18 members of the church congregation raised £2,000 in sponsorship by taking part in a 10 km run at Westonbirt. The money will be split between Andy and another churchgoer Andy Parr, who underwent heart surgery last year.

The cheques were presented to the pair at a family barbecue at the church on Sunday.

Andy Parr, 55, who lives in Hatherley, said: “I’m so grateful. It means a lot to me and my family.

“I had to leave work for a year because of my condition so the money will be a huge help.”

Andy Brown, a member of the congregation at the church, in Hatherley Lane, said they were glad to do their bit.

“Both Andy Blagden and Andy Parr need our support because of the health issues they have been going through, which have had huge impacts on their lives,” he said.

“We are very pleased to do our bit to step in and support them in any way they can.

“We are a community church and that’s what we are here for.”

To find out more about Andy Blagden’s story and ongoing fundraising appeal go to www.blaggersblogpage.blogspot.com



Read more: http://www.gloucestershireecho.co.uk/Cheltenham-church-rallies-help-man-left-viturally/story-21465159-detail/story.html#lVhEL78JqXO2e5Kh.01#ixzz37bg2iSpf

Read more at http://www.gloucestershireecho.co.uk/Cheltenham-church-rallies-help-man-left-viturally/story-21465159-detail/story.html#zgYAElpXKSSrg6MU.99

Saturday, 28 June 2014

Andy at C3 fete!


A busy 2 weeks!!

So...... Andy moved to The Dean on Tuesday 17th June. Moving day went really well, Andy was up and ready to go on time, transport was on time for collecting Andy, our good friend Paul came to collect Andy's stuff and off we all went. I was a bit teary leaving the safety of the hospital and everyone who had cared for Andy and for us, but leave we did. Well....... Andy and his nurses left quite easily but Paul, I and Andy's stuff were left waiting for a lift to arrive,  it took 10 minutes to arrive and get downstairs one level so by the time we got to The Dean the transport ambulance was gone and Andy was waiting in the lounge!!!

Andy has a room and ensuite bathroom and windows. Why mention windows, surely that's obvious. Nope, in the hospital he didn't have a window to look out of so it's highly exciting to have a window that has a view and can be opened too!!

That first week was all about settling in, meeting new staff and getting to know them and them getting to know us, Andy especially. This is not easy at the best of times so when you can't speak it's not easy at all but the staff have been wonderful, reassuring all the way. I have had 'nervous relative' syndrome for that week and have been checking in frequently that Andy has been ok. Andy has also been nervous and this showed itself through Andy's swallow becoming much more difficult to the point where he was choking with each meal and not being able to complete a meal. He and I got worried he was going to be put back onto brown slushy mush feed.
With help and the nerves lessening Andy has been able to get his swallow back to much more of what it was and so is onto food again. He has a back up plan of a supplement feed to keep his nutrition as it should be if he is not well or fatigued ( fatigue effects him greatly and therefore effects his muscles, thus effects his swallow) but he hasn't needed to use it very often, thankfully.

These last 10days have involved working out how best to do things for Andy, so some of that involves doing things and then tweaking it to suit Andy. Simple things I take for granted such as showering, take a lot more planning for Andy but it's done as if it's nothing for the staff. They are quite happy to work to Andy's best and not what's convenient for them. I know we will have lots more different care plans to make but I feel that this won't be a problem as they seem to be very
willing to listen to my opinions and Andy's opinions.

The most exciting thing that has happened this week is Andy going out properly for the first time and not to a medical establishment. Our church had their fete today (28/6/14) and due to amazing friends we were able to get the necessary transport for Andy in his chair, his ventilator, his carer, his emergency kit: crash bag, portable suction machine, oxygen cannister, extra suction piping, tracheostomy care  kit and blankets.

We had a lovely time being family, Lauren was running a stall with a friend making smoothies to raise money for Andy, Nathan was hitching a ride on dad's lap and Katie was having a go on all the stalls. We won on the raffle and chose a games compendium to go with Andy to The Dean. Andy had a really good time out but was knackered when he got back but the staff had saved his tea and Andy perked up enough to eat it and then went to sleep. It's been a good day and it feels like moving forward is really happening.








Sunday, 15 June 2014

10K42A team


Racing times!

In January a very good friend of ours said he wanted to give towards andy's expenses/needs ( long-term things like wheelchair, adapted vehicle, house re-fit etc) but also wanted to show Andy what he means to him so decided to run a 10k race. He then opened this up to anyone and 15odd people (not odd odd obviously, totally amazing peeps) joined him in training to run 10k. 

The race took place in westonbirt arboretum on 9th June, so off went; racers, their families, and friends to cheer on everyone who had trained so hard. 

It was an awesome evening and I was glad to have taken all the kids with me, they thoroughly enjoyed it. It was exciting to cheer everyone on, not just our guys but we cheered anyone- we stood by the finish line so we could see everyone. Lauren and her friend stood at the halfway mark cheering people on which I know helped them as well.

The total money raised is at least £1300, most if that raised on a youcaring page (search for 10K42A) but also done the old fashioned way through sponsership forms!! 

A good evening had by all and for Andy, the knowledge that so many peeps care is priceless!!  

Saturday, 7 June 2014

A little blip!

Last weekend- 31st may- I went up to Salisbury for a course run by the spinal injuries association (SIA) on housing needs to allow me to start to think about what we need done to get Andy home. I took the children and my mum and stayed at my sister's house in Fordingbridge. I rang the hospital Saturday morning as usual and was told how Andy had had a choking fit necessitating the use of oxygen- he's not used oxygen for a couple of months- and, in consultation with the docs, was going be to be nil by mouth for the day. This also prompted the speech and language therapy (SALT)  team to see him again, more on that later.
So..... Back to Salisbury, not really in the mood for this course any longer and having walked 30mins from the park and ride (it was further away than the map made it look) I was feeling rather glum. The course was useful but sitting in a room full of disabled people who were so newly injured served only to add to my darkness rather than boost myself up. Still, as I have 3 kids no time to wallow...... I walked back to the car, this time took 45 minutes and went back to my sister's house.  Took the kids out to the play park with a paddling pool in and found my smile again- phew. Not a weekend I want to repeat in hurry!

So SALT came on weds 4th June, including a lady from frenchay who had done tests on Andy previously, and basically put a camera up his nose and down his throat to see what happens when he swallows. For Andy this is not a nice procedure and immediately showed he has a good gag response. As yet we haven't heard what the results are of the video are but SALT left him saying to carry on food and drink wise with what we've been doing. This is a relief as eating is such a sociable thing to do and nice to taste things too and adds structure to Andy's day plus Andy loves his food!!!
It goes to show how fragile things still are for Andy and that we still need to be ever so careful.


Friday, 30 May 2014

Moving times

Andy is being discharged from Gloucester royal and moving to a neurological care centre called The Dean about 4 miles from home. This isn't instead of Salisbury but rather to get him out of ICU. Salisbury will still be there for Andy the way they have at GRH with a promise that as and when a bed becomes available he will have it (in turn). 

Salisbury have been down and met with The Dean but also are forging links with them anyway so they know them as does a spinal injuries charity involved with us. 

So the big move is on the June 17th, a little over 2 weeks away. Upon asking how I/we feel about it, apprehensive is probably the best word. It's good he's going and it's a step nearer to getting home but it's also leaving the security of hospital and everything and everyone we know. Please pray it goes well on Tuesday and that Andy settles in well and that we can get along with everyone.

Sunday, 25 May 2014

Photos from Jazz & Swing Fundraiser

Here are a few photos from the great Jazz evening that Harry & Carol Blagden organised after the Glevum Big Band offered to support the evening free of charge. The evening was a brilliant success and raised £1700 to go towards a fund to buy Andy & family whatever they need to support Andy coming home. Thanks to everyone who came or who gave.




















Sunday, 18 May 2014

A typical weekend

A typical weekend followed the high of the jazz do. This involves me trying to stay in bed for as long as possible and then convince Katie to make me a cuppa! She is the only one up at silly o clock who can make one, Lauren likes her bed!

Weekends involve homework, school uniform washing and drying, chores, an activity, church and.....
At some point in the day we all troop off to the hospital to see Andy. I love seeing Andy but with 3 kids the visit, for me, is about keeping the peace rather than having time with my husband.  The children need to see their dad though and their dad needs to see them. I am determined that their relationship will not suffer because of what's going on.

We've been in GRH for 7 months now and all of us feel quite at home in the unit, Nathan talks to the nurses and doctors, he will go and find a nurse if Andy requires one, he feeds Andy chocolate buttons or dinner or drinks, he talks it him and is starting to find ways of playing with him........

Nathan also runs the length of the ward with a patter that the nursing staff now comment " here comes trouble" or some such thing,
 he likes to play hide and seek around a pillar located next to Andy's bed, he also enjoys walking through the curtains- the last time he did this though was at a slightly running pace and involved connecting with a medical trolley at eye height, ouch!!
He also likes making potions with water, sugar, coffee, tea-bags and washing up liquid if he's in the waiting room. I then have a tidying up job on my hands!!

The girls on the other hand tend to behave themselves but Katie likes to cartwheel or handstand her way around which is neither practical or appropriate in ICU.

It makes for a very hectic weekend where I'm worn out by the end of the day. So yesterday my girls and niece went to tesco and picked up some stuff to make me a chocolate milkshake, with half a donut- little angels!!

BUT today all the hecticness doesn't matter, all my tiredness is gone because,  Andy has spoken to me- actual real words out of his mouth and even better to learn was he'd spent the day practising for me, I feel really loved and uber excited because his vocal chords actually work after 8months of no use, they actually work ( admittedly, he was very croaky and sounded different). He only spoke for 1minute because he then needed the cuff up on the trachey tube but it was an amazing moment  and has made my day, my weekend!



Nathan's run-in with the trolley!!

Saturday, 17 May 2014

Jazz fundraiser

Wow, wow and wow!

Yesterday was a raging success with over 150 people there. I'd estimate to Andy & I knowing half the people there the other half are people his parents know and are friends with with and came to support Andy/us/his parents.

The church was beautifully set up in a cafe style, with candles for mood effect and bowls of nibbles on the tables. Then we entered........ Nathan liked the bowls of nibbles and when he realised all the tables had them he procured himself more nibbles.
The bar area was well presented and effective with enough choice of drinks. This was run by my brother in law and another guy. My sister and sister in law were looking after glass collecting, tidying up etc, my other brother in law was in charge of the sound system and my parents in law oversaw the whole thing. Me- I got to sit back and relax...... Well sort of, I had a 3yr old who'd gone past the tired stage and entered the 'over-tired' stage!!!!!

The music was very relaxing and the ambience worked well with it to allow for talking and listening at the same time. There was a mixture of music and singing, the lady who sang also played saxophone, she was hugely talented and her voice suited that bluesy style very well.

It was so lovely to meet up with friends of old and really touching to see so many people who were in our lives as we were starting out on our relationship and have known us a long time but whom we don't see regularly.  It was also encouraging to meet people who pray for Andy regularly but don't know him, they know his parents.

There were lots of TV's in the church with a photo loop of Andy over the years right up to how he looks now- a little trip down memory lane. Made me feel very lucky to be married to him and very proud of him too as every photo is a smiley one and not a false smile either, I know as was in them or took them!!
His courage is huge, his bravery is huge, his effect on people is huge. His effect on people will continue to be huge.

I have to say, I'm very proud of our kids, they did Andy proud. They got on together, and Nathan was brilliant if a little noisy by the end. He even took on the job of chief candle blower-outer at the end!

So, a brilliant night, a lot of money raised. What does it go towards- whatever helps Andy pursue his life as independently as possible. We take our freedom for granted, we take our bodies for granted. We take our abilities for granted.

THANK-YOU EVERYONE FOR SUPPORTING THIS EVENT AND FOR SUPPORTING OUR FAMILY!

I will put photos up as I get them.

Thursday, 15 May 2014

Home visit photo

Andy wanted to go home for a visit so GRH arranged for him to come home for 2 hours, during the Easter holidays.

Sunday, 11 May 2014

Introduction post.

Since Andy's operation in August and the life-changing consequences since then I've blogged about whats been happening to us on my Facebook account in a closed group. Andy and I thought it would be a good way for him to let people know what was going on for him, but due to whats happened it's not turned out that way and so I've blogged on it to let people know what's going on.
The main reason for going over to an open blog is the number of people who ask our friends, family etc 'how is Andy doing?' . So we thought this would be a good way to do it, it also has a donation link for people to support him in his journey and it wil become a place to advertise fundraising events such as the jazz evening already blogged about.
I will introduce my self, I'm Charlotte and have been married to Andy for 15 years, we have known each other about 18years, he is a wonderful romantic and has surprised me in the past with all sorts of gifts but the best two were proposing in Paris on the Eiffel Tower and taking me to New York for my 30th having sorted out child are for the weekend and packing for me too. The day after the operation a huge bunch of flowers turned up on my door step and also a week later for our wedding anniversary- he'd organised them before going in for the operation!!

So here we are, I often wonder 'how on earth did we get here' though not as much as the first 6 months. There were some incredibly dark days and I'm glad to be through them and glad to still be friends with the people who surrounded me and looked after me then:)

I often wonder,  if they were dark for me what were and are they like for Andy and it's difficult knowing that I can't access his thoughts as much as he can't speak. But he's a resilient guy and that he wakes up each morning and smiles, and converses with his nurses and allows them to care for him such as they need to is testimony to him and testimony to God living in him. We are part of a brilliant church who have and are looking after us, Christian City church Cheltenham. (C3).
We have had meals cooked for us since this started, lifts to Bristol where he was for 2 months; he is know in Gloucester hospital awaiting transfer to Salisbury spinal unit, monetary gifts to allow me to take our children away for a break, the list goes on.....

As I've said, he can't speak due to excess saliva gathering in his mouth which he can't swallow correctly or safely so he has a cuff on his trachy tube to prevent it going down his windpipe and causing enormous chest problems, this cuff sits below the voice box so air cannot get over the voice box to produce sound, hence why he can't speak. If he could tolerate the cuff down he should be able to speak. We were also told he wouldn't eat and has been tube feed for 7 months, well on Easter Sunday he ate curry and hasn't stopped since!!!
We continue to pray for more but his being able to eat has opened a huge social life up to us, you don't realise how much socialising is based around food until you can't eat food so I'm hugely grateful for that.

So that hopefully, kinda summarises the last 8 months of our lives, here's to what the future holds.........

Saturday, 10 May 2014

Jazz & Swing evening on Friday 16th May

Jazz & Swing evening on Friday 16th May in Cheltenham to raise money to support Andy Blagden who is on a long recovery path after major surgery in August 2013. If you would like tickets to the event email jazz@blagden.net
Glevum Big Band are an excellent 12 piece Jazz band - the practice session was excellent so it will be a great event. Get your tickets asap!!