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.

Monday, 23 March 2015

Autonomic dysreflexia

The first week 'home' (we refer to the bungalow as home, our family home will be referred to obviously as and when I do) has been a very busy week for Andy and us. As a family we have spent most of these two weeks having evening meals together which has been lovely to do, whilst they still aren't as they used to be they a darn-sight closer to normal than they have been or looked like they ever would be. In order to do this I've had to play taxi for the kids, bring stuff over from home, which I then forget to take home again!

For Andy it has meant a huge number of support workers coming and going, most of whom we'd met in the hospital but not all. Most of them have had their competency signed off but not all so they are shadowing the others who are. We've had the clinical team leaders in who have been making sure Andy is settled, meds organised, care programme running well etc. Andy has had to go shopping as the cupboards were bare, visit the GP to get registered and visit the wheelchair centre to talk about a power chair and on Mother's Day he came to church

On Tuesday 17th, which was the wheelchair centre day and it was along day for Andy as hospital transport didn't turn up until 2 hours after the end of his appointment! I had gone to work on an afternoon shift and at 7ish I got an answer message from the team saying ' nothing to worry about but please give us a call as soon as you can'. So I did, it turned out Andy was having an autonomic dysreflexia attack. Autonomic dysreflexia means an over-activity of the Autonomic Nervous System causing an abrupt onset of excessively high blood pressure. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.
Andy has a 'recovery' medicine for this, which should bring the BP down almost immediately, but because he's never had an attack that his body hasn't been able to sort out himself he's never needed to use the medicine and as it turned out the medicine didn't work for him. He was given both doses allowed in 24 hours to no avail so we were left with little option but to phone for an ambulance. I left work early to be with Andy and when I arrived he looked quite awful really, the ambulance turned a couple of minutes later and the paramedics didn't know what AD is so we had to educate them on that and they agreed it would be better to take Andy to hospital. We arrived about 20:30/20:45 and left at 3am. In between times Andy was waiting to be seen by a doctor, whom when she saw him listened to what we said about AD and also about him being ventilated and could only stay on ICU so she called ICU down to see him. The ICU doctor gave him a different recovery medicine which worked instantly and the doctor said so long as his BP stayed down for an hour with his usual meds going in, he could go home and wouldn't need admitting- thank goodness! 
His BP did stay down and he got home about 4am. I got home around 3am and went to bed thinking about the fact I had work the next day. My alarm went off at 6:15, not really appreciated if I'm honest, but I made it to work and was very tired most the day. When I popped in to see Andy afterwards he was looking bright and happy so I added a few digs in about my tiredness and then went home to bed, relieved and pleased he was all good!!!

discharge day

Carrying on from the last blog, Nathan had thrown up and been ill on the Monday and then Katie was ill on Friday night (6th) and then I was feeling rough on the Sunday and then vomiting too, trouble was, Andy was due for discharge on Tuesday and I was due to go up on Sunday night. I had planned a Mother's Day outing for my mum with my sisters and then stay at one of my sisters in the New Forest and travel to London from there, I was all excited and raring to go.... And then I was ill and it was looking iffy that I'd make it to London at all!!
In the end I got a lift up with Andy's parents on the Monday and they dropped me off at my cousin's house and I decided to catch the underground into London and mooch around for a bit to make sure I was 24 hours clear of illness. I ended up walking through St James' park which was good for 'clearing out the cobwebs' in my head. I got up to Andy about 4pm but didn't stay long as I wanted to be ready for the next day.

Tuesday 10th was discharge day and when I arrived on the ward, Andy was pretty much packed up and ready to go and looking after his bake-off cakes protectively! We waited for the ambulance to turn up, which it did and on time too! We'd said a lot of goodbyes on the Monday but still had some on the Tuesday too, I did get a bit emotional but not that much and then the ambulance turned up and we started loading up. Andy had chosen to go on a stretcher for the journey home and was made comfy (as can be!) and then me and Kym got in. (Kym is a support worker-SW). The ambulance made excellent time and we arrived in Gloucester 2.5 hours later at the bungalow and transferred Andy from stretcher to bed to chair and then we asked Andy what he wanted to do- he wanted to eat, so that's what we did with the leftover hedgehog cake from the bake off on Monday. (Previous Blog). 
Cake went well, as did unpacking and familiarising ourselves with the bungalow and the various staff members who were in and out and then the kids were brought over, which was a really special moment for us. We had beef stew for tea, made by my mum, and again Andy did very well with eating it and the staff did very well supporting him to do it.

My parents had the kids whilst I stayed over with Andy for the night to be a support for him, so I took to the back bedroom and settled down to what turned out to be an incredibly noisy and disturbed night. It sounded like somebody was hoovering for 10 minutes every hour through the night so in the morning I asked a senior staff member if Andy had been ok and what had happened in the night, and they said "nothing, Andy's had a good night" I was most surprised but relieved also as the noise had reminded me of the suction machine or cough assist machine or possibly his vibrating chest vest machine and I was worried he'd had a really rough night but it turned out the boiler kicks in every so often and sounds like a kettle boiling or a Hoover running depending which room you're in!! Needless to say I shan't stay over too often.

Bake off day.

Blog 10

Monday 9th was "bake off day" as I hinted at in the previous blog. Andy's respiratory doctors and SLT have been the biggest part of Andy's stay in London and have developed a good relationship with him. It was agreed to do a cake tasting session with him as a good bye. 

This is Andy with the trachy team and SLT, with their cakes- the hedgehog one won!! I got a taste of two of them but not the one with raspberries on, they were delicious.

Andy loved it and I think it was amazing that his team would do that for him, I hope that it carries on when we go up for an outpatient clinic in July:)

Monday, 9 March 2015

It's all coming together.

Since the last blog we've been busy with meeting lots of new support workers and for them to get to grips with the needs Andy has but they've been fantastic and so far it seems to be working well.

One of the reasons that Andy has stayed in London for so long since getting the care agency sorted is so the core team are all signed off as competent in trachy changes. This is of paramount importance because if his trachy tube becomes blocked, that's his air entry blocked and needs to be reopened by changing the tube. (The care agency stipulated the need for each team member to be trained). This has been done once a week for the last six weeks when normally it would only been done once every six weeks, so quite a bit of extra faff and trauma for Andy but good to know that the care agency see its importance and made sure that each core team member is trained.

A couple of weeks ago I took Nathan up with me to see his Dad. Nathan hasn't really seen Andy since his speech has improved and I was excited to see how they would both react to each other. They were brilliant together. I gave Nathan some tips and pointers on how best to understand his dad and then we got on with it. Initially Nathan kept saying to me "what's daddy saying" so I supported both of them until we got to the point of Nathan saying " daddy said this". Its so lovely to think they will be able to converse together and it'll get easier with practice.
Andy, Nathan and I went to the cinema to watch Shaun the sheep in the morning on Sunday and then my parents came up and visited, whilst fitting in watching the England v Ireland rugby match and my Dad and me trying to keep up with the league cup final between Chelsea and Tottenham. (Tottenham lost- more's the pity). Mum and dad took Nathan home with them whilst 
I stayed up until Monday afternoon to be able to see a trachy change and meet the respiratory team. This includes his respiratory consultant as well as his SALT. They are a great bunch of people and somehow it was decided that at Andy's last trachy ward round he should host a 'bake off' style competition so Sarah (SALT) and Drs Matt and Rick offered to bake cakes along a chocolate theme.......... (More about that later, and possibly pictures too)

Monday evening as I'm on the M25 I got a phone call from home so I pulled off to ring back and Katie says "Mum, we've got a problem. Nathan's been sick on the kitchen floor" so I said "ok, I'll be back as soon as I can!!" Anyways, more on that later.