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.
Whilst Andy was in London we got asked if we'd like to do a promo video for the spinal injuries association (SiA) so I said yes. We did a few hours filming and interview and now it's been put on YouTube so we are 'YouTubers'!!
It was Nathan's birthday whilst we were away and it was the first one Andy got to participate in properly since his injury. Nathan was very good and delayed opening his presents until 'dad' was about to see him and then once he'd finished opening them he got stuck into playing with them - in particular the remote control car!!
Nathan's choice for lunch was fish and chips and so we drove into Exmouth in pouring rain to a fish and chip restaurant that, online, looked viable for 9 of us including a big wheelchair. Unfortunately it wasn't so we went back to look at a restaurant that had appeared closed but turned out not to be and turned out to be accessible too so we went there instead!
It was a good restaurant with good food and plenty of portion sizes and we all enjoyed it. We got soaking wet but it didn't dampen our spirits and afterwards we went in search of ice-cream. Alas our search turned out to be fruitless but enjoyable all the same, watching the sea crashing on the beach with wind sweeping us off our feet, almost.
In the evening we went out to the roundtable fireworks show at the rugby ground in Exmouth which was a lovely display and we got to test out Andy's seat-riser which was excellent as it rose him to the lofty heights of 6ft, allowing him to see as he would've before. (I know fireworks are in the sky but this also allowed Andy to see the Catherine wheels on the ground and also allows him to be at people's height. Imagine, if you will, sitting down to have a conversation with someone standing. It can be off-putting at those different heights and more frustrating when you can't solve it by standing up, so this is a really good piece of kit.)
It'd been 18 months since Andy's operation had taken place and maybe 2 weeks since he'd been discharged from hospital and living in his bungalow and I decided we needed a holiday, so I looked through websites, found something suitable and booked it - and then thought about ALL the practicalities!!!
Wow, the logistics of going on holiday as a family now are astonishing. It does make me wonder if we'll go abroad ever again......
So what's different about going on holiday now?
Well, I have to do everything now and packing has never been my strong point! So I packed for me and Nathan, and some of the food, the girls packed for themselves and Andy's staff packed for him. For Andy though the packing includes some of the following;
- Both ventilators, just in case of a power failure. They have 12hrs battery life each. We don't normally take them out on day trips though. - Ventilation circuits. These are the pipes that attach to the vent and the trachy. They come with many components but in one pack. - Cough assist machine. This is routine for Andy and helps shift stubborn secretions. It blows a big wodge of air into Andy and causes him to cough. - Nebuliser machine. This moistens Andy's lungs, making secretions easier to get up. It makes him look like he's smoking vapes!! - Both suction machines, liners and catheter tubes. This is all to help Andy bring up the secretions that he can't do himself. The catheters go down his windpipe through the trachy. - Pressure relieving mattress. This has air pumped in it and allows pressure to be changed around Andy's body where he can't do it himself. Hugely important because a pressure sore could see him on bed rest for months!! - Trachy box. This contains spare trachys in case the tubes get blocked and need changing. They allow Andy to breathe so are vitally important. - Ambibag. Would be used in the event of needing CPR. Very important. - Dehumidifier and stand. This heats the air that's in the vent tubes as Andy breathes, to room temperature. It replicates the job of the nose and mouth! Its important because otherwise Andy's chest could become quite dry and then difficult to deal with secretions. It goes on a stand because it has to be higher than Andy is!! - A weeks worth of medications.
(This isn't exhaustive by any means).
I'd figured my car wouldn't carry it all so I had a towbar fitted for a trailer that we happened to have been given 2 years ago. So on the day of departure, staff and I packed up the trailer with all that equipment and then packed kids and Andy into vehicles and then we set off!
We went to otterton which is between sidmouth and exmouth and is a beautiful little village with little winding country lanes and no phone or internet coverage. Interesting when my phone satnav couldn't keep up and it wanted me and my trailor to go down national cycle routes! We arrived late afternoon, unpacked, had tea, went for a swim and generally settled in to a wonderfully big and beautiful setting.
Next day we got on with business of being on holiday- going to the village pub for Sunday lunch and then on to an artisan cafe for Devon cream teas! It was wonderful being together, doing normal activities. Having the staff around wasn't a problem, they are very good with working so intimately in a family environment and know when to be and when to go. We did lots of other activities such as:
-Sidmouth donkey sanctuary and maze. -Bicton Park gardens. -Exmouth for fish and chips and fireworks. -Crealy adventure park. -Swimming. -Devon's biggest garden centre.
The nicest thing was being together all the time, being able to see Andy when I wanted to or when he wanted to. Eating as a family together, watching movies on the sofa together. Watching Nathan learn to ride his bike, watching the kids swim together. I do need to learn to get over my guilt feelings of taking the kids out without him but I think that'll come with practise when he moves home.
On the last night we all decided we'd go back there again or somewhere else but we definitely want to go away again. It's hard when I hear other people are off abroad on holiday, I want that for us and myself so much but each thing we get achieved means little by little we are getting back to normal, whatever normal is.
Today we had a meeting with the building firm that are going to start our extension. It was the first time Andy and I met them but my dad and F-I-L have been working with them a lot to get to this point. They seemed really nice, professional and gave a good impression. They were also good enough to do a photoshoot with the local press to put in the paper so we can hopefully start a fundraising campaign.
The build is going to go ahead in 3 phases so we can cope financially with it. We have fundraised to the point of being able to dig foundations up to the slab point and we are starting the next fundraising drive to enable us to put up the walls and roofs, windows and doors. This also includes us selling up what was going to be our pension pot via property we bought 10 years ago. We hope this will give us a good boost but we certainly know we need your help too.
please find the link below which leads to the article in our local newspaper.
So Andy has been in London for the first 2 weeks of October. He was picked up by hospital transport and I drove up behind him towing a trailer with his power chair in it! (The ambulance could only take one chair, so he went in his manual chair), It took about 3 hours to get up to London because we all hit traffic on the motorway.
Once there Andy was settled in to a side room which we were all pleased about because of the amount of stuff he had with him. Andy's PA's were with him as per usual which was good because they kept continuity for him. I stayed up til Monday late so I could also be around for the formalities.
Monday consisted of meeting the Doctors, Physio, OT & SALT teams and discussing goals that Andy wanted to set and working out what was possible to look at in those 2 weeks.
Andy had been brewing a bad chest the previous week which had required lots of chest management and then on the Monday, after a chest X-ray, Andy was diagnosed with a chest infection which saw him so fatigued he ended up on a week long bed rest!!
He did have therapy during that week including seeing Sarah (SALT) who did a lot of assessments with regards to Andy eating without his orthotic brace and also drinking. It turns out that eating with the brace IS what he needs to do and it also turns out that drinking is something Andy is NOT quite ready for yet.
The second week was better for Andy in that his chest was better, he got in his chair more and had a hydrotherapy session too!
But the best part was our trip to the O2 to see Michael McIntyre perform on his UK comedy tour. We had excellent seats on a viewing platform that was on the top of the first tier, so not up in the ceiling or an additional afterthought but intentionally sat so we could see the show. We had tea first with our friends who were also going at a restaurant there and then got settled in. As we entered security, airport style, I did wonder what they would do with our bags during bag check and the 'no fluids' rule but fortunately we got let in with no concerns!
We then returned to the hospital and the staff got Andy back to bed and I mooched back to my cousin's house.
I've mentioned on here before how the girls have stayed overnight one at a time with their dad, partly from want and partly because of necessity on my part. Well between us we decided that Andy would have one daughter each weekend, alternating which one goes each weekend. This means that since the end of August Andy has been 'properly parenting'
What do I mean by that, hasn't he always been a 'proper parent'?
Well, NO, he hasn't.
Firstly spending 18months in hospitals/care institutes is not at all conducive to parenting. I never allowed the children to think he wasn't parenting and there were times that I did agree with him and therefore they didn't have that chocolate bar they wanted from the vending machine or whatever, so that they knew we worked together. But often times I had to make decisions myself because as I was on the frontline I had to deal with it regardless of what he might have thought.
Secondly, not being able to speak to his children (I use the word speak as opposed to communicate) was not conducive to parenting either. I always actively encouraged them to talk him using his megabee board or lip-reading but it took a lot of effort on my part, his part and their part to make conversation and he certainly couldn't, with any ease, give them instruction or orders - they could always choose to ignore him or 'misunderstand' him, they are kids after all - so I couldn't and didn't leave them alone with him for any length of time.
Thirdly, being paralysed neck down is............ Actually fairly irrelevant to his ability to parent. (You weren't expecting that!!) Besides anything else that s our life and so we have to work around that little issue!!
The children have obviously maintained contact with Andy and have visited him at all the hospitals he's been in and they visit him at the bungalow regularly. We've done day trips together too but because I'm always there Andy isn't solely responsible for the children. But one day was Lauren was staying over Friday - Saturday and I'd taken the other two out in town on our bikes and we were having a really nice time and didn't want to interrupt it by going to collect Lauren ( that's sounds harsh, I know!) so I rang Andy and we chatted and between the three of us we agreed Lauren would stay overnight another night and it's gone from there really. Andy really enjoys it and the girls do too, although they do admit they get bored sometimes when waiting for Andy to be ready but that's not always a bad thing!
So he has to make sure the girls eat, sleep, complete homework etc as well as some 'caring' responsibilities, such as putting the telly on the right channel, itching his face, doing some of his therapies or getting the PA's if he needs help.
For me, it gives me a space that I don't get during the week with all three at home, and it gives the children a breather from each other to and gives Andy the responsibility and purpose he needs.
The company that look after Andy pride themselves in being a 'can do' company and so are keen to see him achieving what he wants to and are enabling him to do that by working alongside me and him with him having the children over to stay and supporting him to do activities with the children. The last time Andy had Katie he took her bowling at tenpin, I'd booked the taxi for him and so he, Katie and a PA went in the taxi and the other PA followed in his car to go there and back again. Both PA's should really travel with Andy just in case but this would then result in him not being able to access any of the taxis, so by following behind they are being supportive of Andy's desires within the remit they have to ensure his health and welfare. ( health and welfare is far more than being physically present at the end of the shift but that's another story!)
Andy was able to actually bowl the ball by using the bowling ramp and they had a good time, he wasn't that far off Katie's score by the end!
It's new, and old, territory for us all but it's good and another step in the right direction for us all.
It's been 2 years since I waved my lovely hubby off into the operating theatre to have a tumour removed from his spinal cord.
We had to leave at 6am in the morning to arrive at Bristol Frenchay for 7am, our friends took us down and at one point on the drive we all commented about the sunshine. We took some selfies in the good light and carried on down to the hospital.
This is our last selfie together.
We registered at the hospital admissions site and Andy was called in fairly quickly. I went with him and gave him a quick kiss before he was ushered in by an impatient nurse - I wish now we'd taken time to talk to each other before he went in, it's something I took a long time to accept had happened.
I have a lot of memories that are still vivid in my mind from those first few weeks where Andy's life either hung in the balance or was considered critical. I remember so many painful things from that time that if I drive to Bristol on the motorway even now my heartbeat races as I drive past J15-17. It took many months to face driving to IKEA because it involved going near the hospital.
I took the children to Newport transporter bridge a few weeks ago and came back on the M4 and M5 and didn't realise until we were on it where these two motorways meet and i still felt sick, i weather it better now but its still there.
Memory is a funny thing because some things I expect to remember I can't, like what I had for tea, but I can remember so vividly many things about that time in Bristol and it's funny little details too not just big things.
I remember waving Andy off into theatre and feeling annoyed with the nurse who rushed him in, did she not realise the magnitude of the operation and length of recovery he would need (should it have gone to plan).
I remember going to meet our friends at the cafe after leaving Andy and seeing a lawn mower with gloves on the handlebars that made it looked like an invisible man holding it.
I remember the smell in the hospital as soon as we walked in.
I remember having chats about how we reckoned the Dr's would play on their chairs whizzing down the steep corridor.
I remember the doors to ICU had a small gap that we would look through to try to get attention or to work out what was going on with Andy.
I remember we nicknamed the other patients based on a quick glance on our way down the corridor to Andy and then thinking "did others do that to Andy" and hoping they didn't!
I remember how long it took to dawn on me that Andy's life was in danger whilst the nurses told me they were getting me a room in the hospital's relatives flat.
I remember driving home on the Saturday to tell the children dad wasn't well at all, I remember taking the biggest pause when Lauren asked me if her dad was going to die and thinking I'd better answer soon else she'll think the worst.
I remember how numb I felt and walking round the site because I'd heard the air ambulance arrive and standing, numb, watching and thinking about how someone's life had been tipped upside down.
I remember seeing Andy's blood being discarded because dialysis had gone wrong for the third time.
I remember being scared because Andy was having a blood transfusion and then seeing the small bag of blood dripping in and thinking my worry had been a lot over nothing.
I remember the feeling of dread when the Dr wanted to talk to me.
I remember one of his Dr's telling me that Andy's operation had been a "bloody big" one.
I remember seeing Andy after he had a lumber puncture and seeing how dead he was behind the eyes and how I knew something was wrong and how I thought I'd lost him.
I remember the incredible pain I felt at the thoughts going through my head.
I remember seeing Andy's arm restrained to the bed like he was arrested because he was pulling at tubes in his nose ( before the total paralysis happened) and feeling so sick to the pit of my stomach.
I remember Andy's best friend staying at the hospital to see him come out of theatre, praying for him. I remember Andy's best friend going down with me everyday for 6 weeks in the evening, and taking me back to his for a cuppa and time to absorb what had happened that day before taking me home.
I remember Andy's parents going down with me every morning.
I remember my mum moving in to ours and taking over my parenting responsibilities. She still does but for less days now.
I remember being excited that I'd eaten about 6 chips and telling my friend I'd managed to eat that day - sum total was 6 chips!! I drank tea with no problems though!!
I remember my sister doing a sponsored ride of 150 miles to see him when it was a 40 mile trip max. I remember riding with her some of the route to get fresh air and meet a friend in Yate.
I remember ringing work once a week and telling them I wouldn't be in the next week. I did that for 5 weeks!
I remember watching the movie 'Hot Fuzz' on my iPad with Andy on our wedding anniversary and Andy's best mate holding the iPad up for the length of the movie, in affect he was a TV stand for the night!
I remember leaving my bike locked up at Frenchay so i could take a ride on it during quiet time at the hospital.
I remember taking the children in to see him for the first time and how scared they were, not knowing what to expect and having never been in hospital before, much less ICU.
I remember lots of things that seem odd to remember
Whilst it's easy to say about how much we've lost, as a family and individuals, and anniversary days are a stark reminder of this we also need to remember where we've come from and how much progress Andy has made. But it will always bring a pang of 'what ifs' and 'what would've been'
We will mark the day by acknowledging it with sticky toffee pudding from Frankie & Benny's, because its good to acknowledge it, it happened and we can't change that fact but I'm sure it will be tinged nonetheless with 'what if'. (the 'what if' we hadn't had the operation is this: certain total paralysis and or death, not much of a choice really)
Whilst we look back and mourn these two years we also look at what has been achieved in those 2 years and especially given what was spoken over him, what was said about his future. We can also look forward to Andy coming home and resuming his role in the family and for us to make new memories together.
This is the last photo I took of Andy and our children before the operation. We went to the Forest of Dean for a day outing at Wenchford picnic site. The children had so much fun splashing in the water and although they knew their dad had an operation the next day, obviously none of us knew what was in store for us all to go through. A precious picture.
So, what have we been up to with a set of wheels...........
We have been;
: school uniform shopping,
: Gloucester fireworks display
: A 'Pimms & cake' fundraising event for Andy, held by a wonderful work colleague
: A local cinema to watch 'the minions' movie
: Date night for Andy & I to watch 'mission impossible -rogue nation'
: A proper 3 bird roast at home with the family
: Several visits home for dinner
: Visit to Bristol zoo
: Visit to Ed's diner at Gloucester Quays
: Pizza evening at my parents home and watching "bake-off"
: Trip to Winstones ice cream parlour on Rodborough common and then to Stroud park
: meeting up with friends at KFC
Busy to say the least!!
For Andy the above schedule was also inclusive of daily chest physio/management, limb exercises, speech therapy done daily. He also had visits from his parents and used his tilt table as well.
For me, I went to work as usual and also spent time at night time dropping Andy back home which was a 45 minute round trip to drive 3 miles there and back, this includes getting Andy safely secured into the van and safely out of the van!
I also had to return the van back to London after I'd worked 8 hours on the Wednesday I drove for around 3 hours to London with Lauren. I stayed at my cousin's house again which was a lovely blessing and spent time with Lauren on the Thursday before catching the train home, arriving back at about 5:30pm.
As you can imagine we were both incredibly tired but it turned out that the pressure of the schedule cracked me first, with me needing to sleep off an episode of vomiting!!
Halfway through the summer holidays now and I'm exhausted! But that's to do with a rather packed 2 weeks with Andy and the children because we had a WAV again!
The reason for getting it this time was because Andy had a clinic appt at Stanmore, which we were expected to transport ourselves to but if we couldn't we could ask for help with hospital transport. I figured we'd see if we could borrow 'Charlotte' again (see a post from 13/6/15) but for 2 weeks instead. I collected the bus on a Wednesday having taken Nathan and my nephew with me on the train and gone to the London transport museum with them. The boys had a lovely time at the museum and I behaved myself by not reading every word possible in the museum!!
We got the van around 7pm and eventually got back to Gloucester around 10:30pm. Then....... Back on the road to London at 10:15am!!
The appointment in Stanmore was great, and it was really good to meet everybody again. They all commented positively on Andy's improvements and were really pleased to see how well he is doing. Emma, his OT, had a few pointers for Andy which we're working on. Andy will be offered a 2 week placement soon in London for some more input which we are all really pleased about. After we finished in London I suggested going somewhere for dinner but Andy was really pooped so we headed home and he fell asleep, tiredness/fatigue seems to be common with high spinal injuries. Except after a short nap he decided he was hungry so we stopped at a lovely service station for McDonalds and Mexican!
We got back about 10pm in Gloucester and I think it's fair to say we were all exhausted!
It's been getting on for 7 weeks since I last blogged, I know I'm not a reliable blogger so I do thankyou for sticking with me on this journey and looking to see if I've written anything new only to find not!!
I do keep thinking "what have we done that's exciting to write about?" And in short, I can't remember now because it's been so long - ha. I then also get reminded that this blog is like a diary for us as well and whilst I haven't disseminated my feelings or thought processes on here and I don't want to use this as a 'pity party' platform, these last few weeks have been very busy for me as a parent and seems a good time to write about it.
The last term of the holidays is always a busy one and it's been particularly so this year as 2 of the 3 are changing/starting schools and the third is starting GCSE years. Most of you will know what that entails but for those that don't or can't remember it's something like this;
- Taster days at school. Nathan has gone with his playgroup and I took Katie up.
- Transfer of CAF's to relevant schools. A CAF is a formal way of stating a child needs extra support because of whatever the issue is. Each school does one for their child but Harewood were good enough to do one for Nathan too. It allows me to access funding for extra support if and when needed though it usually requires a contribution from the parents these days.
- School reports.
- School summer fetes to attend, especially as they sell the uniform there.
- School sports days to attend.
- End of year picnic at junior school.
- Leavers parties to send children to, Nathan went to cattle country and Katie had an activities day and disco. More money!
- Meet and greet at the infant school to pick up uniform ordered and take home a holiday pack for Nathan. His first topic is 'journeys' which I'm excited about as we are going to do a lot of them over the holidays!
That's an idea of what's gone on and doesn't include the emotional side of it, which I think has been heightened this year somewhat especially knowing Andy isn't able to participate in these activities. Re-read the 'guilt' blog because that always likes to rear its ugly head from time to time.
I remember saying to Andy years ago when we had our pizza shop, and only saw each other as passing ships, that I would never let him leave me as I was never going to be a single parent as it was too hard (we didn't have Nathan then either). Well, I have become a single parent to all intents and purposes. I know this statement could be taken the wrong way so I hope to qualify it here and now.
Andy is still their Dad and I always treat him as such and expect it from him too BUT he currently isn't in a position to be able to actively parent outside of the times we go to his. He also can't actively parent when we do come, to a certain degree.
- Because of his speech difficulties it makes instant decisions difficult for him to voice, such as 'stop' if Nathan was about to run into the road.
- Because of his speech difficulties his conversations are longer to voice than mine and Nathan, in particular, gets bored or forgets the first part of a sentence.
- Because of his lack of movement he can't go after any of them, again Nathan in particular, so he can easily ignore him or move out of his earshot or eyesight.
- Because he doesn't have a powerchair yet he can't keep up with them at his choosing, he has to have his care team do that and that then depends on whose working.
A few examples of the problems he and I face as parents, so that brings the parenting responsibility down to me, and that is hard. 3 children, 3 different ages, 3 different affects on them from this situation. Nathan expressed his feelings the other day by shouting at the PA's that were on duty "I don't want you here" and asking me why we have them and if I could look after daddy we wouldn't need them. I then explained that if I looked after daddy I couldn't look after him and that brought his tears to a stop. But it's not a natural situation for any of us, least of all him!
On the opposite side of all that, our children still have their father and he is getting more involved with them slowly but surely. The girls have had a sleepover at Andy's on their own which they've loved. Andy has also really enjoyed it and it gives him and them one to one attention. He can take responsibility for them safe in the knowledge that they can get themselves sorted and keep themselves safe.
I had a sleepover with Nathan as well whilst the girls were elsewhere ( not just randomly left at home!!) and again it meant quality time for Andy with Nathan including bath time and story time before bed. I stayed as well because Nathan can't keep himself safe and sort himself out in the same way the girls do but hopefully as he gets older that'll come!
Through all these difficulties both Andy and I face I only have to think back to this time last year and then I realise we have moved forward so much and that our lives, and Andy's in particular, has changed so much for the better.
Our BIG trip out was to Cadbury world! Very excited kids and equally excited grandad too! We were booked in for a tour in the afternoon so we had enough time in the morning to get us all ready. I went over to Andy's and we packed up the van with Andy, kit, PA's (personal assistants) and 1 child and 1 grandparent in 'charlotte' and me and 2 kids and the other grandparent in my car!
Cadbury world was incredibly busy, but then it was half term!
We had a lovely picnic lunch made by my mum before going in for the tour. First stop on the tour is the free bars of chocolate, for 9 of us, hmmm very tempting to start off with! The tour was very good and really quite inclusive too, there was very little that we could do that Andy couldn't which is, now, a really good day trip for us. The one big bit Andy couldn't do was the Cadabra cars, that was because his chair was a few inches to long. Andy was gutted by it, not so much because of the ride as he has done it before but because he was going to go on it with Nathan and also because it showed him the barriers that will face him in the future. The good bit for Nathan was that Kym, a PA, took Nathan on another car whilst Will brought Andy down to the rest of us.
One of the best bits of the tour is the liquid chocolate with extra toppings on which we all got to partake in, Andy twice!! The PA's also got to join in with the activities going on but also still ensuring Andy's safety. I feel that we have a very good working relationship with all Andy's carers and it's great that they do join in with us and also feel at ease to work with each situation as it arises as in Nathan riding the Cadabra car with Kym, else he'd of missed out!
So a good day was had by us all and we got home by just about 8pm to be greeted by the night staff taking over!!
As a lot of you know Andy is a trustee of the Tom Roberts Adventure Centre in Newent that my parents are centre managers for (Please see the link to the right) and that hosts the 'Dads and lads' camp www.bigmanlittleman.org.uk that he is a co-founder of.
In 2014 he couldn't have anything to do with it as he was in ICU in Gloucester.
This year I was determined he would have some involvement in it, which he did with one of the planning meetings. I also wanted to get him there but didn't know how and it gets hard work looking for transport for him when the same 'no, can't help' answer arises. It's also hard to keep asking our friend with a WAV as he has it because of need not pleasure so when I'd spoken to our London OT (see previous post) and then to the charity and found they had a free vehicle for half term and the very weekend of BMLM, it was a no-brainer.
On Saturday 23rd May, with glorious sunshine to boot, I turned up at Andy's house with Katie, Hannah and Nathan and 'Charlotte' at 11ish expecting to help get ready to go to BMLM for 2pm, but no, he was all ready and raring to go so we set off for camp, around midday! Andy was very excited to be going and it was written all over his face. It was slightly marred by having 2 female SW's and ME with him that day as he has always made it clear that BMLM is a 'man' camp!!
We arrived to see everyone getting out the lake from raft building and in time for 'tin-pot' surprise lunch. This is where you make a fire to cook on and choose tinned food that has no labels on it, hence the surprise, and that's your lunch. I'm sure if Andy wrote about it there would be a far better explanation!! I handed him Nathan and, with friends and his brother and nephew, left him to it to sort lunch out. Nathan had a baked bean sandwich, so I'm told as Andy made it clear I needed to disappear and he even told his SW's off for talking!!
Later on was the falconry display which I didn't disappear from. ( seriously wasn't going to miss that). Andy's brother Pete helped look after Nathan with him whilst I snuck in and watched. It was a beautiful display of birds flying, and the kids and adults alike were encouraged to 'fly' the birds. Andy got to have a falcon sit on his arm, at which point I jumped out and took a photo thus dashing my sneaky sneaky hiding but hey, photo opportunity beckoned!!
Andy spent until 7pm at the site, and just before leaving he was presented with his BMLM T-shirt. He was very tired but very satisfied and the whole effort of getting the bus was, for me, completely justified.
HALF TERM: a short holiday in the middle of a school term - Collins English dictionary definition
My children's definition is: please provide endless amounts of entertainment laid on for us as we are VIP's
My definition: frantic race to think of things to do with the family, ensuring we are still sane at the end of the week and without spending the prerequisite fortune and with the added challenge of the activity being able to take place within a 1/4 mile radius of Andy's house OR not involve their dad. Any ideas, Morrisons anyone?????
Well, thanks to a timely conversation with the London OT, I found out about the Barbara bus fund: www.barbarabus.com and was able to borrow a wheelchair adapted vehicle (WAV) for the half term week. BUT, I had to go to either Stanmore, Stoke Mandeville or Sheffield to collect it. I chose Stanmore for obvious reasons but also its a journey that can be made entirely by train (until the last mile!)
So I went up to London on the 22nd May with Nathan on the 9:30am train from Gloucester carrying a suitcase and a car seat because I had a bunch of stuff to return to www.specialeffect.org.uk and Nathan needed a car seat for the return journey. The suitcase had a load of poles sticking out of it as they were to big for it - we looked interesting!! Nathan was very well behaved, especially getting from Paddington main station onto the tube with me having my hands full of stuff and not holding his hand, but he is a seasoned undergrounder now!!
All the vehicles are named after a friend or family member of the charity's founder, Barbara Werndly and the bus we'd hired out was called Charlotte!
So Nathan and I drove back to Gloucester via some stunning countryside in Oxfordshire and the 'little chef' restaurant on the A40, getting home around 7pm and picking up my niece and daughter enroute. Long day but very worth it!
People say to me ' it must be lovely having Andy so near now' and yes it absolutely is but one of the hardest things I find now Andy is in Gloucester is my division of time and my guilt about it. Essentially I feel like I'm failing everyone all round as I don't spend enough time with the children or enough time keeping house or enough time with Andy and never enough time for me. I'm writing this at 11pm and so tired my eyes are red!
Some of what I have to contend with, guilt wise, is:
3 children. Ages 14, 11 & 4. Need I say anymore on that!!? They all go to different educational establishments and whilst 2 of them are capable of getting there unaided I still have to chivvy them along in the mornings. (Mornings aren't my best time either!) There are different clubs to attend after school, various friends to go out with, which is brilliant for us both but not helpful when they sort their social lives and expect me to work around them! They are like any children and treat home as a hotel and wonder why I get annoyed at tripping over shoes, bags, etc etc. Lost favourite teddies.(youngest one specialises in that, fortunately not traumatised as yet), Their favourite moan is the turnaround time on the clothes washing- it's not easy washing for a family when you're never in to do it!
I then feel guilty at having 'fun' with the children but without Andy and I find it hard to plan a trip for them knowing full well he can't come, so then I try to balance it with 'over-visiting' to make up for it. I'm sure he knows it's not for lack of trying on my behalf but that doesn't change how I feel. I hate guilt, it's such an insidious emotion.
Work. I only do 2 days of paid work. 7 days mothering, 5 days of spousal support. I obviously support Andy all the time but usually go over 5 days a week as I'm working at my job for 2 days.
Andy. I go and see him lots and when I'm not seeing him I'm chasing up stuff, thinking about stuff, talking to care team about stuff, in order to make his life better.
My home. My mum does a fab job at looking after my home, better than I do it has to be said, but then I'm never in long enough to look after it.
The hardest bit is that Andy wants us around and we want to be around but it's not the children's home, their stuff isn't there, their personal space isn't there, there are no spare rooms that they can go in to be quiet or alone or when they want to be out of the way. We also find the furthest we can go is about a quarter of a mile radius because of the manual chair and the kit Andy needs to go with him, makes it very difficult to go much further without a vehicle. The area is lovely for going for a walk or to the play park as well and Morrisons is a particular highlight these days!
It's brilliant he's there and far far better than hospital or The Dean but the other day I looked in the lounge and for a fleeting moment just thought "could he come home now and live in the lounge whilst we fundraise to build an extension and bring him home" and immediately I knew the answer was "no" but it would make everything just a teensy bit easier. If he were on the same premises.
So, 2 weeks after discharge the easter holidays rolled round and as always the kids need and want entertaining. Whilst they love seeing their dad they do get bored as they don't have much of their stuff there and to go anywhere requires forward planning, sometimes it's a10minute plan to go to the local park or it requires days of planning, checking and checking again.
So about 2 weeks after discharge I had a bright idea: to go somewhere further than the end of our street by some method of transport!!
After a bit of thinking it was decided to go Weston-Super-Mare by train!
The clinical team agreed it was do-able, so they looked at the clinical and safety aspects of this trip, I looked into train tickets and rang the accessibility team at great western trains and organised the help required.
We were given a lift to the train station by a friend, making it with 30 seconds to spare!! ( he'd had an AD attack in the morning!)
The train trip down was uneventful but enjoyable for us all and we got into weston in good spirits. We walked the 15 minutes to the seafront and were greeted with hoardes of day trippers as it was the first hot and sunny day of the year that was also school holidays. It was beautiful and felt really good to be out as a family, doing regular stuff. We had fish and chips on the seafront, bought buckets and spades and the kids dug a bit in the sand, went on the pier and pushed 2p's for a long long time- it turns out Andy is very good- and then called the ambulance because Andy's blood pressure dropped to around 75/50!
All in a days trip!!!
The long and the short of it was that with the right action Andy was fine and we got on the train that was scheduled to be the 'B' plan and got home courtesy of the same friend again.
All in all a good day had and showed us what's possible!
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!!!
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.
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:)
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.
It was agreed with the team in London to do another outing with Andy as part of all our learning process. Andy and I decided ( maybe more of me, perhaps) to go the orbit in the Olympic park and to go out for lunch at the Westfield shopping centre. Going out to lunch is something nearly all of us takes for granted but for Andy it's been 17 months since he has eaten in an establishment outside of hospital so it was exciting to be given the opportunity. Previously Andy was on a strict "no eating outside of the care centre" regime, but Stanmore are keen to support Andy in his wish to eat food and thus have given him the 'tools' to manage the risks associated with his wishes to eat normally.
As I was already up in London and my parents were coming up on the Friday to visit my gran, I persuaded them to come up a day earlier with our kids thus allowing me to do my earlier visiting in the week. Our grouping though become huge, we consisted of Andy and myself, Lauren, Katie and Nathan, my parents, and 4 support workers- 2 were from the hospital and 2 were from the agency that support Andy and as they were coming up anyways we figured it would be good for us all to work together. Andy went I a MPV and the children, me and grandparents went on the tube!!
It took an hour to travel the tube to Stratford and poor Lauren lost phone signal most the way which was difficult for her as she had no internet 😂
We found a big enough seating area on the food hall and ordered various different food items, Andy ordered a jacket potato with chicken tikka in it. It looked lovely but was on the spicier end of tikka but Andy said he'd have it, but one bite in and the cough I suspected was coming he soon changed his mind- he has had to go to mild curry now because the spice causes him to cough!! Apart from that though he ate really well and enjoyed being out and about.
We then went up the tower in the lift, enjoyed the views and the heat of the space as weather had gone really bitter and Andy was complaining of being cold, if Andy feels the cold then he really is cold as he has altered sensations so we kept him near the fans to warm up. When we left Katie, my dad and me decided to walk down the tower instead of taking the lift- all 455 steprs😀
All in all, it was a good afternoon out, very tiring for Andy and for me and, I suspect for my parents too. We learned some valuable lessons going forward too, one of them being that we probably can't wrap Andy up too warm!