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, 25 January 2015

WE NEED YOUR HELP!

With Andy one step closer to coming home we are needing to seriously start thinking about how we extend our house not just to physically bring Andy home but so that he can partake in family life as he did before, albeit in a new fashion. So we have been drawing up plans for an extension which will provide us with a downstairs double bedroom and wet room and an enlargened kitchen/diner/ family room with provision for care staff and Andy's consumables (medications, equipment etc) 

The above doesn't sound cheap and it's not, and whilst it's exciting thinking about 'new' stuff I absolutely wish we weren't having to do this but we are where we are and so it is that I'm asking for your help.

Andy's brother has built us a website, it's called www.buyandyabrick.com and it is what it says (on the tin-lol) so please if you can, help us to buy a brick - or a window, door etc etc.

New horizons.

As a family all we've ever wanted is Andy back at home and that has never seemed anywhere near- except now. We are looking at the end of February to see Andy return home, well at least to Gloucester anyways. He is going to move into a bungalow 3 miles from home and with a care team of around 6-8 people in total, 2 in a shift caring for him.

This is, of course, wonderful news but us but also is becoming quite scary for us both. I can see in Andy a nervousness not normally likened to him and I'm feeling it too. It will mean big changes for us all, especially in how to be a family again with relative strangers with us in everything we do. 

The hospital have been ordering all the equipment Andy needs and it's been arriving at the hospital and is apparently acquiring more and more space in someone's office!! in Andy's bungalow I'm confident it'll fit because there is more rooms than he needs there but at home I'm not so sure, I might need to get another shed!!!

The care agency are coming in on Tuesday onwards so we both get to meet them, a least some of them. Over the next couple of weeks there is carer training so Andy gets to meet who is looking after him and they get to learn about him and his needs. I hope that we are able to have it that the carers get to learn about Andy and his family and ALL their needs. 

A whole new episode, new horizons!

Progress being made.



Things are moving apace in London, as always. Andy is being kept busy busy busy with all his 'work' and making good progress.

A progress update looks like this now;

- Night only ventilation- which means he's off the vent from about 9am til 10pm.
I only found out Andy was night time only vented 3 days afterwards when the respiratory doctor said "oh by the way, did you know....."  He then also said that Andy should "just go for it, and see how it goes" 
I love the attitude of being willing to try stuff with him to see if it works, after all we won't ever know until someone is brave enough to try.

- Speaking valve on during the day so much more speech going on, still needs lots of practice which he is starting to do with SALT.

- He's now eating a bigger variety of foods in starter-sized portions, including pasta bolognaise, jacket potato and cottage pie at lunch times and a treat in the pm such as rice pudding or home-made cake and custard.

- Good tolerance of one of the leg splints- these are required to stop any further foot drop but they are a close fit and it takes great patience to get used to them. The other leg is still highly sensitive so hasn't put the other splint on.

Talking of splints, Andy also has a body brace to give him trunk control and good posture which all helps with his sitting in and driving the chair but also with his swallowing, eating, breathing, speaking. The trouble is Andy really struggles with the body brace as it needs to be on so tight to have the desired effect but then it feels really uncomfortable and strange for Andy.

Really a 'rock and hard place'.



Monday, 12 January 2015

Birthday boy family photo 2014.


Christmas


A lot has happened since I last blogged and that's mainly: CHRISTMAS!

This was, for our family, the 2nd christmas in hospital in a row. It worked out well for us and was far better than last year. A friend of ours who lives 20 minutes away from the hospital was going back to Gloucester for Christmas and offered us use of her home whilst they were away, so I said "yes" without a seconds thought, that was a real blessing. 

The days were spent doing what people do at Christmas but in a hospital instead. Not all that easy though with a variety of ages going on. Christmas dinner was wonderful as we were able to eat together as a family which we didn't get to do last year but the food was, well.... The turkey was nice but that was all that turned up so we ended up eating a 'cobbled-together' Turkey salad style dinner instead!!! 

Andy had given his parents his Christmas gift list of stuff to purchase for me, which was really lovely to get pressies and they mean more because they are thought out more.

The Saturday after Christmas Day was Andy's birthday and we had with us a birthday cake so we were able to celebrate with cake with Andy which was hugely exciting, as was having all Andy's family coming up to London to be with him on his birthday. I'm learning that it's the 'simple' things in life that are what important- seeing Andy taking these small steps (although in reality they're huge as, according to previous medics, he shouldn't be doing them at all) that we do without thinking is hugely exciting and one of the bestest moments is seeing his face light up when tasting a food he hasn't had in 16 months and that, perhaps, he thought he'd never have again.

New year was a similar routine in that we drove up New Year's Eve to my aunt and uncle's house half way to London and then carried on to London New Year's Day. This time I had booked hospital accommodation for 3 nights and it was lovely; a 2 bedroom flat, kitchen, diner/lounge and bathroom. It was 5 minutes walk from Andy's bed which meant that we didn't have to drive anywhere, I could leave our eldest in bed as is her want (sometimes) and she babysat the other 2, allowing me to go see him on my own. It was also good to be able to cook our own food and not rely on sandwiches etcetera.

It has to be said though that whilst Christmas and new year were good to us it is definitely good to be back in the usual routine!!