Nigel Povey was a healthy and active 62 year old. On Sunday 20th August 2017, he suffered an incredibly rare brain stem stroke. He had been unwell for a few days, feeling dizzy and nauseated. This was diagnosed as Labyrinthitis, an ear infection. Following a seizure, he was rushed to A and E, where a CT scan confirmed a brain stem stroke. The following morning, Nigel was sent to theatre. 2 clots in his brainstem were found, but nothing could be done and damage was too severe to operate. The family were told on that morning that it was extremely unlikely that Nigel would survive. Despite terrible odds, Nigel did survive, but was left with Locked In Syndrome. This means he is completely paralyzed, except for eye movements, yet fully conscious. We have created this blog to give regular updates on Nigel’s progress.
So, Nige has been on the exercise bike today! Amazing!
All the staff are absolutely over the moon about the trachy and are saying it opens up so many things he can go to now, gigs etc. They all want him to stay at BIRU.
His voice is still not great but we’ve told him to work harder!
Busy day today. Caroline, Maddy, Harry and Nige had a meeting with the therapists and consultant about what happens next. They assured us that Nige will not just be booted out once funding runs out. First step is to tell NHS about the trache coming out, and seeing if they will extend funding. If not, they will contact the council to see what they suggest ei, to extend funding at BIRU, fund rehab elsewhere or a nursing home. Nige will not be sent home until home is suitable. The council decides whether Nige needs to be cared for under health or social services. It may take some time to come to a decision.
Everyone put forward their goals for Nige, which are to get more function from his left arm so he can use a tablet, lift food and drink to his mouth and perform basic hygiene, keep working on Nige’s swallow and voice, specifically simple key words like yes and no and to continue bladder training. Everyone was positive that these were realistic and achievable. The SALT Che Ming is going to put forward a case to keep Nige where he is for as long as possible, which is what he wants.
Caroline, Maddy & Harry stayed for a SALT session and saw Nige eat for the first time! He had yoghurt and managed each mouthful perfectly. He was struggling a bit when he first had yoghurt a few weeks ago, but he has made great progress with this. The aim is to get him to manage pureed food.
Harry and Nige had a lush moment when they were sticking their tongues out at each other!
Caroline saw Steve from the Benevolent Fund this evening, and they spoke about continued help and support with financial needs, and specifically them supplying an electric wheelchair, as the NHS will only supply a manual one. Steve will take this to the committee. Overall a lush day, feeling much more reassured.
The trachy is out!
Nige hardly has any voice at the moment but that’s just because of the procedure. Really big step in recovery !
Nige was out in the garden with 2 work mates when Caroline arrived. Caroline and Nige then both went to the singing group which was great fun. Apparently Nige usually does a solo but no voice today. They sang Swing Low Sweet Chariot which Caroline objected to strongly 🏴
Jamie Freyne, Nigel’s nephew, is doing an Iron man Triathlon in August which involves a 2.4 mile swim, 112 mile cycle and 26 mile run. Jamie has kindly offered to that the fundraising he raises for this will be donated to Nige’s ongoing support costs via his Go Fund me Page;
Thank you so much Jamie – All the best!
Caroline had a nice afternoon in the garden with Nige, and Gill and Joss’ mum Suzanne. Suzanne showed Nige photos of her 2 recent holidays. Lots of nice conversation. A good day
Maddy, Nathan and kids visited Nige today. They went to the lounge and played chess and did crosswords. Nige was happy and looking forward to Eurovision!
Nige was asleep when Caroline & Frankie arrived. He had visits from Tim Crisp and Caroline’s parents.
Caroline & Frankie had a lush visit, Nige told everyone about the work he does in SALT, speaking the alphabet so Caroline and Frankie did that with him. Also got Nige to say everyone’s name, the grandsons were the clearest although Baz was easier than Kingsley!
NIge has the wheelchair people coming in next week to discuss an electric wheelchair. We are hoping to get financial assistance from the Benevolent Fund for it and have a meeting next week.
Caroline, Maddy and Harry went to see Nige today.
Nige and Caroline both had words with some staff today! Andy put Caroline’s mind at ease a bit about Nige coming home. They claim that they are not giving up on Nige’s rehab, but it is coming across that way to Nige. The OT is looking into getting an electric wheelchair sorted.
They all went out in the garden and had a nice visit.
Then Nige went to Southmead to get an injection for his shoulder pain.
NIge in a good mood tonight and asked to go outside as soon as Frankie and Caroline got there, it was nice but a bit chilly. Came into the lounge and did crosswords which was fun.
The appointment was cancelled today. Nige has another at Southmead tomorrow for his shoulder.
Caroline, Gill & Mat went to see Nige and chilled in the garden. Gill gave him a fashion show and he thoroughly approved. Nige was good but is feeling like the staff are giving up a bit on his rehab. He says he wants to walk again but they are all being quite negative. Had a long chat about it and he is determined to continue defying all the odds.
His bladder control is going well, 400 ml held until he needed to release. She remembered Maddy and Harry.
Mat and Nige were talking to Kay who was also in the meeting last week and she’s very much on Nige’s side and had some really great info that not even Nige knew about. She’s going to call a place called ‘The Dean’ in Gloucester to see how a referral there works. It’s similar to BIRU and a lot of patients go there from the BIRU to further their rehab and it’s seems quite successful. Nige suggested she enquire for us just so we have info on all potential options.
Nige was quiet and tired but fine and his beard is trimmed.
Nige has an ENT appointment at St Michael’s tomorrow morning to do tests on his swallowing
Caroline went to seen Nige today, hasn’t been able to see him since Wednesday due to a sickness bug. Caroline showed Nige the photos of the family meal which happened today, which he loved. They sat out in the garden, Nige had his Glastonbury hat on so was well happy!
Nick, Sam, Marley & Kingsley went up to see Nige this morning and he was doing well.
Maddy, Nathan & Harry visited in the afternoon and went out in the garden to enjoy the sun and to get Nige out in the chair. Nige got a bit hot so they didn’t stay out long, went to the lounge and did some cross words together.
Caroline and Frankie visited Nige and he was on top form tonight. All singing Abba songs and the lush nurse Karina came in to join the party! Frankie did Nige’s nails. Chatted about the extension and Nige said he can’t wait to come home. Frankie showed him the Kikamora pledge video.
Mat visited Nige today and he was the funnest person he encountered again today. Nige cried when he told Mat ABBA are getting back together – Mat thought it was because he hated them so much but apparently Nige likes them and they were happy tears. Nige loved his heart to heart with Gill on Sunday. He was asking loads of questions and there were many laughs. It was a good visit.
Nige has a bit of a cold, but was able to blow his own nose! He is getting used to everything coming through his mouth again, in stead of his trache. He has only had 2 suctions since his trache change.
Nige was really chatty today. It is still quite hard to understand him, but he is really trying to vocalise and is getting better.
Nige got his new mini trache today, which is tiny. The staff predict it will be removed completely in 2 weeks
Nige has now gone 5 days without a suction, and will be getting a mini trache tomorrow.
An old football friend visited, which he enjoyed. Frankie played guitar for him, and she discovered he can now clap!
He had music therapy and was working on his balance in the gym.
Nige started bladder training today, which means that the connection between brain and bladder is working again.
Nigel’s key worker spoke to Caroline today, and he is confident that Nigel’s funding will get extended further.
His trache was capped off and be was able to breathe himself for 30 minutes. They will do this a few more times, before moving to a new mini trache. Nige is also now able to do his mouth suctioning himself.
He was out in the garden again, and Frankie visited and sang and played guitar, which he loved. He has also decided not use his electronic spelling board anymore, and instead use his back scratcher to point to the right letters, which is quicker.
Nige was a bit tired and sicky today, because he was doing weights in the gym. He will be going outside on his chair tomorrow. He has been talking about coming home a lot, and been getting family to practice re-positioning his pillows.
Caroline and Gill spent a couple of lovely hours with Nige.
Read him a really long and wonderful letter from his friend Rob Hunt who is travelling the world. Nige loved hearing all about it.
Gill showed him a video of Joss, Lisa’s boyfriend playing guitar, fantastic!
Well, do you all remember Charlotte from Southmead? Lovely blond Health Care Assistant. Well, she only came to see Nige on Friday! Apparently she is going to university to become a nurse. Nige was made up that she visited. She has dark hair now.
Nige was sick just before Frankie got to BIRU this evening but he seemed absolutely fine and was just a bit tired. Nige asked Frankie to play some tunes because they were watching a music programme on BBC and it was all ball bag so Frankie played him some proper music.
Mat went in to see Nige today and gave him a much needed shave. Nige was sleeping when Mat got there and was super tired.
Caroline, Maddy & Harry went up to see Nige today. Nige had his boots on all afternoon and managed 2 hours in the chair. He also had strawberry yogurt today.
This is what Nige has been working on when alone;
James and Laura came to deliver the wedding invitation and that made Nige very happy
Nige was in a good mood today. Frankie and Caroline visited and gave him further details about the funeral yesterday. Caroline showed Nige the order of service and messages from the flowers.
Nige managed 4 hours in the chair today and had peach yogurt yesterday.
Caroline was given some forms regarding applying for funding for when Nige comes home and we are going to speak with the discharge coordinator. Apparently we can apply for more funding for BIRU but this is for discharge and its good to start things in motion now as it can take a long time to organise.
Nige still a bit coughy but was going to have his nebulizer after Caroline and Frankie left.
Mike spent 2 hours with Nige today, catching up with all Mike’s news. Mike has been and continues to be a really good friend to Nige.
Today was the funeral of Nige’s mum so the family were all away. Nick did manage to call in late on to see Nige.
Nige had his boots on for five hours today and had peach yogurt which he loved.
Nige still a bit coughy today and complaining of a dry mouth. Caroline saw him with Gill today.
Caroline visited with Sally at lunchtime today and when leaving she bumped into the consultant and he said that Nigel’s extension for funding at BIRU is not 6 months its 6 weeks.
This is a bit f a shock to the whole family.
Nige is actually okay with this. He is annoyed, but apparently 6 week extensions are the norm, and we can keep applying for more. Nige kept saying don’t worry, and it is what it is. Seems like it has been a huge misunderstanding. It seems the consultant just said 6, and we all assumed months, but he was very unclear. So this is 6 weeks from the end of the month, so it is actually closer to 10 weeks guaranteed.
Nige was tired tonight, done 4 hours in his chair. Caroline and Frankie were in and he told them the nurses were crying when they found out he’s got his funding. Caroline said its because they want him to go home 🤣
He had more yogurt today, this eating business is soooo cool. He was quite coughy but said his trachy is feeling better.
Mat had a brief visit today. Nige had 5 spoons of yoghurt and no problems with any of them and he was happy!
Nige’s funding had been extended! Meaning he can stay another 6 months at BIRU from the end of April.
Nige really happy to see Caroline, Maddy, Harry, Gill and Lisa today. Lisa gave him a signed CD from Courtney Pine (famous saxophonist) which made him cry!
Bloods have been sent off but they don’t think he has an infection. New trachy still sore.
Ray is off. Lush Sarah is back on the ward and loves hearing Nige say “Hi”.
Nige is the most happy today as he ate CUSTARD today. Five spoons full! Had a lovely visit from Mat Povey and told him all about it.
Sam, Nige, Marley & Kingsley popped in to see Nige this evening. Nige has got sore Trachy patch. Dr being called in the morning to prescribe a cream, not sure why it’s causing him so jip, very coughy. Nige said his stats are okay now, he was going to have to go to southmead last night but they are happy his stats are okay.
Nige is struggling to sleep and for a sign to be put up asking that staff don’t wake him up for observations unless it’s necessary as he is getting little sleep. Apart from that he seemed good.
Nige also loved his Kingsley cuddle
Caroline was back from holiday today and said it was lovely seeing Nige and telling him all about the holiday. Sally and Caroline had prepared a presentation, day by day account with photos! Sally hasn’t seen Nige for a long time and enjoyed catching up with him and seeing his progress.
Duncan and Sylvie were there when Caroline and Sally arrived.
Lazy fingers are really on the go!
Nige’s stats had been erratic Saturday night so they took blood to check for infection. Might just be because of the new trachy and they had settled down by the time Caroline left mid afternoon.
Nige did 2 hours in the chair while Caroline was there and said “Bye” to Sally as they left. Sally found it very emotional as its the first time she’s heard his voice.
Nige said he saw Duncan today!
Nathan, Maddy, Owen, Ruby & Harry visited and was sleeping when they arrived, then very tired still. Nige has quite a bad cough at the moment, but it is due to the trache change. Nige had Harry cuddles and seemed happy
Frankie went to see Nige tonight. He was cool and can talk a lot more now. She didn’t have to use the board nearly as much. Not much more to report – oh he said “wanker” to someone on Eastenders.
Update from Andy Nige’s physiotherapist. Andy said yesterday Nige did 24 hours with the cuff down and had no problems so yesterday they gave him a smaller trachy with no cuff. So there’s more air through his mouth now, and he’s managing his own secretions! They will review this over the next couple of weeks.
Andy said he’s noticed a positive shift in Nige’s mentality following Kate’s visit. Nige actually asked to have the boots on yesterday and wore them for 4 hours and has agreed that while in bed during the day he will wear them. Nige doesn’t want them on over night though – fair enough. Nige is holding his head up by himself a lot more in the chair. They haven’t removed the headrest just in case, but they have moved it back to encourage self support. The physio sessions have been relatively gentle for the past few months – because the focus was to get the trachy out and they didn’t want to compromise that – so from next week they will start to amp up the more physical activity physio and we should see some more positive advances in that area soon. Andy definitely sounded impressed with the latest surge of intent and focus and positivity!
Nige bossed having his cuff down last night! Maddy and Harry visited and it was still down when they left, about 26 hours! Nige just wants to rip it out lol.
Nige is getting a smaller trache today, and they might make it a permanently cuff down one. He was quite coughy this morning, but the staff weren’t worried. He was getting pissed off with the staff doing their thing, because he just wanted to chat with Maddy lol.
Nige was good tonight! Frankie visited and they had lots of laughs and Frankie showed him pictures from her weekend away and from Caroline holiday, which he loved. Frankie played him some tunes and watched a bit of football together lol. Jack Butland was playing and he said he makes in a week what I make in a year! He is having the cuff down overnight tonight!
Mat popped in tonight and Nige was tired but happy. He did 14 hours with the cuff down. Hopefully next week they’ll swap it for a cuffless trachi, then won’t be long before it’s removed all together.
Nige needs to work on swallowing still but his mouth is so dry it’s not easy. he has not been wearing his boots. He must!
Maddy saw Nige this evening. He had a lush day, 3 old mates from Guildford visited today, Bernard Ingram, his wife Jane and Dave. They used the board and stayed more than 3 hours! Another 12 hours with the cuff down today, but not in his chair. Said some clear words too.
Nige was in a great mood tonight, 12 hours cuff down today the legend!
Caroline surprised him with by visiting as she didn’t think she’d get up there again before holiday but Frankie took he up on the way back from Frome.
NIge had his review today. It was all really positive. They didn’t say for definite, but they are very impressed with his trache weaning and are confident he will not need it eventually. They will be upping his cuff down time to 12 hours soon, then morning till midnight, then overnight
Physio is good, he is getting stronger in his left leg recently. His speech has also had good progress, but he still has some facial muscles that need to be stronger to be able to say words clearly. His swallow has been getting better, and he will be eating yoghurt soon.
The OT is very impressed with how Nige is getting on in his chair. The new chair was just a tester, but Nige did well in it. Nige will be getting one specifically for him soon.
Nige wants his catheter out, so they are gonna change his current one to either a “super pubic” (lol) which goes in his tummy or one that switches on and off.
Nige was with in meeting, for the first time, and was happy with how it went. Caroline, Maddy and Harry were also there.
Frankie wen to see Nige and he was good this evening. Nige has done two days in a row with the cuff down for 8 hours and is gonna eat yoghurt tomorrow!
Stun day for Nige today with his visit from Kate. Very inspirational and honest lady. She has encouraged us to do Nige’s exercises with him as part of our visits.
He sat in the chair for 4 hours straight today with cuff down the whole time. Said Hello Harry really clearly and when Kate asked, What sort of hospital doesn’t have a cafe and dad said This one!
Kate is very hopeful for Nige’s recovery as she said he has the right mindset and the support of his family. Nige is further along his road to recovery than many people she has visited. Its all about belief and hard work and Nige has never been afraid of that!
Also, was a lush moment when Harry was sat on Nige’s lap, and Nige leaned forward to kiss his head! He also sat with his head not resting on the head rest a couple of times for about 5 mins, which Kate said is really important to do.
Nige continues to be a legend! Another 4 hours in the chair with cuff down. Caroline visited and noticed he is really using his tongue when he mouths his words and when he was talking to a member of staff she understood him fully just through mouthing!
Frankie visited and noticed real movement in his right arm which is soooo exciting!
Mat and Dan went to see Nige and he was happy as a clam again. They talked about Kate’s visit and Mat had homework to read the rest of her book and give him the highlights but in true Mat Povey Vs Homework style, he didn’t do it so they devised a plan that you’d tell her they only started reading it a month ago and are half way through.
Nige did 4 HOURS with the cuff down and only stopped when the staff stopped him.
Nige was good and really happy to see the Nick, Sam, Marley & Kingsley this evening. He was showing off all his new moves.
Jimi and his mum today visited this morning. Jimi brought his guitar and an amp and played some Pink Floyd and a new Kikamora track. Jimi’s mum was amazed by the improvement in Nige.
Caroline watched the Rugby with Nige and then Maddy, Nathan and Harry arrived. Nige really chatty today and pleased with the 11+ hours he’s done in the chair this week. Caroline was chatting with the staff and the general feeling is that Nige is doing brilliantly.
Just had an update from Nige’s Key Worker. Nige doing really well, as we can all see, upping his time in the chair and with his cuff down. They are going to increase cuff down time to 4 hours next week. Swallowing is improving. They never gives a timescale for getting the trachy out but said it’s looking positive.
Nige’s speech is also improving, they’re working on single syllable words.
Framkie took Reuben up to see Nige today. Nige loved it!
Nge did two hours 20 minutes in his chair this morning and a further hour while Caroline, Maddy and Harry were there. Reuben Povey is visiting on Friday morning!
Nige was in really good spirits, chatting with the hot doctor about guitars and Q Base. Caroline asked Dr how Nige is doing and he said “Brilliantly!”
Nige said “Bye” when they left.
Nick and Marley called in to see Nige today. Nige was doing really well and managed to sit sat in the chair for 2hrs 10mins today.
Busy day with visitors for Nige today. After days’ of snow the roads are clearing so family are all able to get to see Nige today.
Nathan visited in the morning and had a good catch up about football, work and how bad the snow had been.
Mat visited around lunchtime and had a good chat.
Caroline visited in the afternoon with Frankie and Nige did another hour in his chair as well a practising his writing.
He wrote Frankie & Nigel
Nick called in to see Nige today. His first visitor since 28th Feb! Everyone has been snowed in. Nige was good and has had a good few days. Said that they had been short of staff due to the weather but it was all ok.
Caroline, Maddy and Harry had a lush visit with Nige today 😊 He was in his chair when they arrived and stayed in it for 1 hour 45 minutes! Nige had his cuff down for about 45 minutes and said loads! They compiled a list as they didn’t wanna forget any of it:
I love you
Was all very emotional and lovely. They were in the lounge for quite a while. Nige also scrolled through some photos on Caroline’s phone.
Nige had a good day today, though tired from having the new trachy fitted. He managed an hour and a quarter in the chair too.
Mike Freyne visited and they enjoyed talking about their wild days in Guildford.
Nige was very tired today. Caroline went up early and he was sleeping when she arrived. Had a chilled visit. Wanted a rest day so was not planning on going in his chair. Was trying to push lazy hand with his good hand, nearly managed to push it off his lap and onto the bed!
New trachy tomorrow, the weaning continues!
Frankie and Caroline visited Nige tonight and heard Nige speak! They were talking about James and Laura’s wedding and Caroline was telling Nige not to dribble. Frankie joked that she was a dribbler and Nige said “me too!” So lush! And also funny!
Nige was doing good tonight and it was a fun visit! He was also wiggling lazy fingers and trying to squeeze Caroline’s hand with them!
Nick, Sam, Marley and Kingsley all popped into see Nige and he was most impressed with Kingsley and not impressed with trump….lol
Big news! Kate Allatt is visiting Nige on Weds 14th March. Kate is a Brain Stem Stroke survivor who has made a full and complete recovery after being locked in. Kate visits people and gives advice to them and the medical staff. She has been through all of this and knows how to recover. From the research we have done and seen after Kate has visited people make massive improvements. We are really looking forward to this and think this will be a great step in Nige’s recovery. Well done to Nick and Maddy for arranging this.
Caroline, Maddy and Harry visited today and Nige wanted to go to the lounge as soon as we they there. They all spent a lush hour in the lounge with Nige in his chair. Nige helped Maddy with a crossword. They saw Che Ming, who said that Nige’s swallowing is improving loads. Nige used to cough when he swallowed, meaning it was going down the wrong way, but this is happening less and less. We all need to encourage and remind Nige to swallow during visits.
Hannah the OT came for a home assessment today. She is really hoping Nige gets an extension on his funding but it was just to get the ball rolling.
Caroline went up to see Nige today and when she arrived Tim was with him. Nige had also had 2 visitors from Craddys.
Caroline had a nice visit, pretty uneventful but he had been down to the lounge for 2 hours and was tired. Nige is really going for it, especially with building up his sitting tolerance and his talking. He said “Hi” to Caroline but she took the piss out of him cos she’d been there 2 hours by the time he said it!
Che Ming has been working on his swallow and gave him a raspberry drink. Not quite Thatchers Haze Nick!
BREAKING NEWS!!!! As Caroline and Gill left today Nige said “Bye’ as clear as day! Such a magical moment.
Nige was fast asleep when Maddy, Nathan, Owen, Ruby & Harry arrived this morning, looked so cute! When Nige was all ready, they went in and the nurse said his cuff was fully down, but he had just woken up and wasn’t up to talking. Seems he deflated it himself? Not really sure.
Nige was in a great mood, laughing and joking lots with the kids.
Nick and J went in to see Nige tonight, he was really happy and catching jokes with us and was happy to see j. Nige also showed off his hand moves which was lush to see.
Caroline visited Nige today and had a lovely visit, chilling watching the Winter Olympics. The nice nurse Kerrinna, said Nige had only had 2 suctions all day and that secretions were clear. She was chatting to Nige about the importance of family in his recovery, we all get a gold star!
Caroline had a lush visit with Nige until the very end when he was sick 🤢 Ray was on it, literally dropping everything – the drugs tray – to sort him out.
Frankie played guitar beautifully tonight, apparently Sarah wants to hear her play, she and Nige have been chatting about bands today.
Nige has been working really hard, an hour and a half in the chair every day and working on his right hand, some movement coming back! He is having his trachy changed for a smaller one in two weeks time, he’s dead chuffed about that.
Caroline spoke to Nige’s Key Worker today and progress is good. Mentioned about getting Nige to the wedding and he said that was a really great goal and they will start planning the logistics soon.
Nige had a lovely letter from Peter from Pirbright, he’s a really nice bloke
Nige was in his chair when Maddy, Harry and Caroline arrived today with cuff down, desperately wanting to get back into bed! Its such hard work for him but he is an absolute bloody legend.
Nige gave Caroline a Valentines card which she loved! Thanks to Maddy for the thought, Mat for getting it (though Nige didn’t like the first one Mat got apparently!) and Nick for helping him to write it.
Nige in a good mood today. Tim Crisp visited at lunchtime and stayed for a couple of hours. He’s a friend who had a brain injury a few years ago so that was lush.
Caroline and Sally came up in the afternoon and Nige was using his scratcher really well. Sally put his cards and flag up on the wall.
Frankie arrived in the evening and was reading Nige his birthday messages on Facebook which he is loved.
Sam and Mat went up to see Nige for a couple of hours early in the day. Nige was calling everyone a wanker and they heard his voice when he coughed. Nige had a cuddle with Kingsley. Nige was a bit tired when they got there and said nightstaff kept him up and he’s hadn’t slept much.
Helen popped in to see Nige in the afternoon.
Nick visited in the evening and Nige was really happy. They talked about cyclists and how they are wankers! Enjoyed a thatchers haze together and Nige loved that, to top it off Duncan and Sylvie face timed Nige and they shared some happiness and laughter. They are thinking of visiting again maybe in April.
Quite day for Nige today. Nick went up in the evening and all good really.
Mat visited and Nige was happy again tonight, he was sick and needed a couple of suctions, but overall doing well
Caroline, Maddy and Harry visited Nige today and he was a huge pain in the ass! Lol, They all got very frustrated when Nige was trying to explain what he needed. After 20 minutes of Nige spelling ‘pillow’ ‘4’ ‘shoulder’ and ‘under’, and nothing they suggested being right, they called for help, who just took away all NIge’s pillows and started again. Nige was happy with whatever they did!
Nige’s physio cancelled yesterday, said she would pop in to explain why and never did. Huge shame as NIge is so on it right now. He is using his eye gaze really well (unless it’s to do with pillows!)
Mat visited today and the highlight of Nige’s day was when a tradesman came round with an angle grinder and trimmed his toenails…lol. Nige was most proud of his pedicures feet. Nige was well happy again lots of laughing.
Nige had his shower today and looked all clean and smooth. He was in a good mood, enjoying Kingsley cuds and watching Marley play with his new toys.
Bit tired from his shower but other than that another good and happy day.
Nick and Sam called in to see him in the afternoon and Pete and Issy popped in as well.
Nige had a busy day today. Caroline watched the Rugby with him ( Wales slaughtered Scotland, just saying) then all the Charles arrived closely followed by the Bristol Poveys.
Sarah was working with dad today and she is going to give him a shower tomorrow at 2. Caroline also asked her if she would come to Laura and James wedding to look after dad and she said she’d be honoured.
Dad mouthing SO well today.
We had an update from Nigel’s Key Worker today.
Psychology – mood is stable and Nige is completing some cognitive tests
OT – Nige still refusing to sit in chair for upper limb work. The cushion doesn’t seem to have improved sitting tolerance.
SALT – Nige will sit in his chair for trachy work. Key Worker suggested that he has given up a bit on his mobility a bit. Whilst Nige believes he will make a full recovery his number 1 goal is trachy out and talking, hence full engagement with trachy work. The new trachy is a venistration one, that is it has more holes for air flow, but he will still only be able to talk with cuff down. Apparently he said “music” today which is lush.
Discharge – There is a professionals meeting a week on Monday to talk about extending Nige’s funding. Fairly hopeful this will be given.
Caroline & Frankie visited Nige this evening and had a nice uneventful visit . Frankie cut his nails which really needed doing! No suctioning again whilst they were there and Caroline noticed the new trachy makes a low whistling noise when he breathes, look out for that!
Nige said that he is getting bored, which is understandable and probably a good sign, when you’re feeling poorly you don’t feel bored do you?
Mat visited and Nige was really chill tonight. Happy and content and tanned for some reason although he seemed pretty sure he hasn’t been out in the sun.
They chatted and then watched some of that show where they put cameras on wild animals – which Nige loved.
Caroline, Maddy & Harry had a nice visit today. During SALT Nige was asked who was visiting today, and he said ‘Caroline, Maddy and Harry’!
He was with work friends when they arrived, using the board. They hadn’t seen Nige in a while and were very impressed with his progress.
The new trache seems to be irritating his throat a bit, but apparently it’s nothing to worry about as he just had the op.
Nige loves his new trachy, apparently it doesn’t have a subglotic port which means he is further along the weaning process.
He was in a good mood and was lifting his head a lot.
He said Hi and Bye again whilst on tilt table with cuff down. He was doing really well with his mouthing of words.
Frankie visited in the evening and had a lush visit. Taking about the gig on the weekend, work, reuben povey.. just stuff!! He was doing good and had no suction the while Frankie was there.
Nick visited Nige today and he was really happy to chat.
Nige had is op today to change his trachie and it went well but left him very tired.
Andy called in to see Nige as well today.
Nige was in good spirits today. Visits from Nathan, Maddy, Harry, Caroline & Jill. Chatted to Nathan about the new job and to Gill about politics! He’s a bit nervous about having his trachy changed tomorrow, it’s not nice, but it should be the new holey one which is really exciting!
Lush visit today with Caroline, Ralph, Louise, Katie, Jessica, Nick, Sam, Marley and Kingsley. First time the Hauling Island Poveys had met the Kingmeister, they loved him, obvs.
Nige really going for it with the Eye Gaze! Makes conversations flow much easier and he doesn’t get so left behind when lots of us are chatting.
Mat visited Nige tonight and he was cool. Nige was really cheery and was laughing as Mat walked in. The eye gaze is incredible and he’s ‘the dogs bollocs’ at using it as he told Mat. Mat left him watching the football.
Caroline, Frankie and Jimi visited today. They played Stairway to Heaven which Nige loved!
Nige was using the Eye Gaze loads this evening, telling us about a visit from an old friend Darren and dobbing in the night staff.
Caroline gave him his round cushion for his chair which will hopefully increase his sitting tolerance.
In his physio session he was on the tilt table with cuff down and whispered hello then said hi and bye!!!!
We checked it all out with Che Ming and she confirmed everything and said now he has done it and is less dyspraxic, it should be happening more and more.
While Maddy, Harry and Caroline were there he was coughing, which can sometimes deflate the cuff, and when Maddy asked “do you need a suction” he said “yeah” clear as day!
Lazy leg was moving a lot too. Nige is really going for it!
We have set a major goal, which Che Ming says is feasible. To get Nige to go to James and Laura’s wedding, see them married and make a speech in whatever way he can.
Nige is having his trachy changed on Monday, possibly to one with holes in the sides which will allow air flow and hence aid speech. This will depend on the review of his trachy data tomorrow.
He has also had a shave and was in great spirits though tired towards the end of the visit.
Nige was in the gym when Caroline arrived today, working really hard. He then sat in his chair with her for another 45 minutes. Nige also mouthed Happy Birthday to Caroline.
Nige is having his trachy changed next week which is a very unpleasant procedure. Some friends from Craddys turned up in the afternoon.
Mike went in to watch the Bristol City vs Man City game with Nige in the evening.
Nige was tired but happy today when Mat visited. They talked a bit and Mat started reading the autobiography about “that dude from that band”. Nige was ok about the football news, Sanchez joining Man Utd, although they quickly got into a discussion about which guy was the bitey one – apparently it’s a different person….lol
Caroline had a lovely chilled visit with Nige this afternoon telling him about the meal last night.
Nige really enjoyed his 12 visitors yesterday! So was enjoying a relaxed day today.
Nige told Caroline to look in the top drawer where there was the most beautiful birthday card for me, signed by him! We both cried.
Busy day for Nige today with lots of visitors. At one point he had Nick, Sam, Marley, Kingsely, Caroline, Jill, Nathan, Maddy, Owen, Ruby & Harry all in to see him.
Nige was good today and enjoyed seeing everyone.
Nige really had it about him tonight! Had Caroline and Frankie running around and trying to work out what he wanted to say. He was getting frustrated and when that happens you can hear his voice which is lush. Apparently, after all these months he doesn’t like it when we stand too high up the bed so be warned!
He has also been giving the therapists a hard time, complaining that they are always late.
Nige now has TV control on his Eye Gaze which he loves.
Caroline saw the consultant today and he said Nige will be having his catheter removed soon. Ray warned us its not always successful but is a good step forward. Caroline asked for Nige to have a shave, face and head, and a beard trim. Ray was up for it tonight but Nige was watching football. It is scheduled for Tuesday morning.
So, it’s official! Nige is definitely no longer Locked In!
The official diagnosis is now, brace yourselves, “Recovering left cerebellar and pontine infarction”. Note the words ” recovering” 😁 and cerebellar, which refers to a part of the brain, and pontine which refers to the pons which is the part of the brain stem responsible for our most basic functions.
Most of all note the word RECOVERING and celebrate the fact that Nige no longer has Locked In syndrome!!!!!!!
I know it’s only words but this feels enormous!
Caroline, Nathan, Maddy & Harry went in to see Nige today and he was in a good mood. Apparently Nige has had a good old moan about yesterday. (Hannah dropped him in it)
His Key Worker rang Caroline for an update and they have noticed an upturn in his mood this past week and a real motivation to get cracking. He didn’t know about the feet crossing and was pleased to hear about it.
Caroline asked how Nige was progressing overall and he said the mobility is slower than expected but the communication side is faster. He then said “When he was locked in” …… and Caroline was like, rewind! He doesn’t think Nige is still locked in but is going to ask the doctors for a formal diagnosis. That would be great news!
Caroline asked again about getting rid of the trachy and he said that is the number one goal and that they are fairly confident Nige will then be able to start talking again.
Frankie called in to see Nige today and he was good. He was a bit bored because most of his therapies were cancelled today. Frankie played him some tunes on the guitar and just had a nice chat. Nige was happy when she left.
Sam & Mat called in to see Nige today. He was tired had a busy day. He did the tilt board and was a bit teary. Left him watching football he was happy with that.
Busy day for Nige today. Nick called in to go over the car with Nige to make sure it’s all ok. Nathan went in to watch the Liverpool vs City game and at half time Caroline, Steve, Adrian, Jill, Jean & Haydn all called in on there way back from Wales.
Nige was feeling sick again today. He has had some anti-sickness and they stopped his feed for a while to let it settle down.
Good chat with everyone and was a busy day.
Nige is in a great mood tonight, he had the cuff down for 30 minutes today and made Mat spell out ‘well done’ to him on the Megabee.
Lush visit this evening! Nick was there when Frankie and Caroline arrived and had been there for a good long while.
Watched the Big Cat programme with him which was lovely, although Nige did have to have his nebulizer during it which was loud and annoying!
Saw Sarah and told her we are all gutted that she is working in the other unit now. She was dead chuffed and gave me a big hug and said she was annoyed about it as she has built up such a great relationship with Dad, us and some other patients. She also said that she and Debbie were still going to try to do Dads shower as it was important and they have built up trust with him which was lovely.
Great leg movement today….
Nice visit with Caroline, Maddy and Harry today. Nige was tired after a full day of therapies and enjoyed Harry cuds. He was very well in himself and his breathing was really clear. An uneventful but lovely visit.
Caroline took a call from Hannah, Nige’s OT, this morning and she was super excited because she’s just done a Music Therapy session with Nige. They found a thumb app for Nige to play chords and he was jamming along while the therapist played guitar! Hannah was so moved she just had to phone Caroline. She described it as a magical moment. He will be having Music Therapy every Tuesday.
Nige had a very busy day doing all his therapies. He loved the music therapy SO much and got really emotional when Caroline told him that Hannah had called as she was so overwhelmed and just had to tell her about it.
He was sitting in his chair when Caroline arrived and she had a long chat with him, he loves being consulted about all major family decisions 😍
Nige quite tired, having a rest before Sally visited later.
Nige was left watching Man City vs Bristol City
Wonderful visit today with Caroline and Frankie, which was made even better by Nick, Sam, Marley & Kingsley turning up!
Nige was chatty and had Kingsley cuds. Frankie cut his nails and Marley blagged a load of sweets from the receptionist. Another resident was kicking off so that was sort of exciting!
Nige had visits from Nathan, Maddy, Owen, Ruby, Harry Jimi and Jimi’s Mum. Was a nice visit and Nige seemed very chipper. He was showing his leg movements. Jimi’s Mum enjoyed seeing him, saw massive improvements and Jodie sent up some healing crystals.
Mat visited Nige tonight and he was good. They watched the football and in Mat’s words “hate Liverpool cus they suck”…lol
Caroline and Frankie had a bit of a weird visit! Nurse Bronnagh got distracted while doing Nige’s meds and spilt water over the sheets. 🙂
Nige was coughing a lot, tale end of the cold and they could hear his voice on several occasions. Apparently this is because he coughs so hard he deflates his cuff and that allows vocal chords to work. Was weird/lush to hear his voice.
Nige wouldn’t have his nebulizer and was moaning but then cracked Caroline up when he spelt out “When you return?” Like a line from Lord of the Rings!
There is a lush Rehab Assistant who was chatting to Nige about missing her children and dad was telling her money isn’t everything but family is. Was really moving.
Also arm and hand are getting a lot stronger;
Nige feeling much better today, so much better that he moved lazy elbow in physio!
Had a nice visit with Caroline, Maddy and Harry, nice and chilled, watching Pointless
Nick and Marley called in to see Nige in the evening.
Poor Nige has got a virus! Aching limbs and lots of coughing. There isn’t a lot they can do to treat the virus, just lots of fluids and rest.
Nige did limited therapy sessions today and was feeling a bit fed up. As Sarah told him, its just a bump in the road.
Frankie played him some songs which cheered him up and Mat Povey was also visited.
Nige had to go over to Southmead for a chest x-ray this morning. He hated it! Good news is that it was all clear and the nice nurse explained that it had to be done as a precaution as his obs had been low and a blood test showed signs of an infection.
When Caroline arrived at BIRU today Nige had a good old moan! He soon perked up and was chatting with Gill about her New Year and how much he enjoyed Joss playing guitar to him last Thursday.
So not a great start to the new year for Nige, but onward and upward.
Caroline, Maddy, Nathan and Harry all went in to see Nige this afternoon.
Nige had a shower today which is a major achievement
Nick, Sam, Marley and Kingsley all called in to see Nige and he was really happy to them and full of chat.
Nick from Craddys called in this morning to see Nige and they took Nige up to Film club in his bed.
Caroline, Ralph, Louise and the girls all went in to see Nige for the afternoon. Nige was in good spirits.
Frankie and Caroline went in today. Nige was in a good mood but felt a bit sick. The staff were on it immediately and gave him an anti sickness injection and suctioned his mouth. No full on suctioning the whole time they were there but Nige did ask for his nebulizer.
Nige had a busy day with lots of visits. Lisa and Joss went in to see Nige and Joss played Nige some songs on the guitar which he loved! They arrived at the same time as Nick and family so that was a full room of visitors!
Family friend Anne also popped in to see Nige.
Maddy, Nathan and the kids went to see Nige. He had been in the gym and was still in his chair when they got there. Had been managed a couple of hours in the chair!
Nige asked to get back in bed and he looked more comfy when he got back in. He was tired but happy. Mouth moving really well, and arm and leg despite being tired.
Nige in really good spirits this evening. Mike and his son Kieran had popped in earlier which he loved.
Sarah and Debbie were nagging Nige to have a shower and he was cracking up saying it was like having 3 wives! Anyway, they have scheduled it in for Sunday so that’s really cool.
Nige got Caroline to tickle lazy foot and lazy leg bent right up, it was cool.
He absolutely loved yesterday with his record breaking number of visitors but got upset when he told us some patients had none
Nige was transferred back to BIRU this morning!
Nick went see Nige and he was very alert and chatty. Nige loved hearing about how Nick’s works party and about Kingsley!
Nige also looked at Nick and mouthed “I love you” when I ask if that was what he said… started crying and said yes 😊. Nick told Nige that even though I don’t always let him know but his face and body language isn’t hard to understand.
Nathan and Caroline visited Nige in the afternoon and Nige wasn’t very comfortable in his bed but asked to go in his chair. This was good timing as we had already arranged a little surprise for him…..
Frankie and Jimi had brought Reuben up to BIRU and we were able to take Nige outside to see him. Nige loved this.
Nige was comfortable and happy today. Staff looking after him really well. While Caroline and Gill were there they were sorting out transport for tomorrow morning, so looks like it will be happening. Nige can’t wait to go back. Also, forgot to say that he saw Victoria (SALT) yesterday but hasn’t managed to track Charlotte down!
Nige is well today. He is getting a new catheter put in at his request. Obs are good, and he had a blood test which will determine when he can go back to BIRU. If all good, could be today! They said most likely tomorrow.
Maddy, Owen, Ruby and Harry went in to see Nige today which was nice. He was fast asleep when they arrived, and was still a bit drowsy throughout the visit.
Nige was looking really well this evening and mouthing so many words its incredible! He will hopefully be moved back to BIRU tomorrow
Nige is in much less pain. Should be going back to BIRU in a couple of days.
Mat visited Nige today and Nige is doing loads better. Said he was still quite ill this morning but feels loads better now and seemed it too. Was quite a funny night, lots of laughs no tears
Nige has a chest infection.
Nige in so much pain today. Had to have an operation to have something done to his peg. They are also talking about changing his catheter.
Catheter finally taken out, new condom style one put on. Nige finally able to get some sleep.
Nick visited in the evening and Nige was cool told Nick he was in a lot of pain earlier so at least he is not in as much pain now. Had good chat and Nick told Nige he has to do the table and shower more! Left him watching the football
Bad news. Nige has to go to Southmead as he has an infection. Might be for a few days. They aren’t sure if its the urinary infection or a chest infection as he was sick this morning and some went on his chest.
Nige was feeling a bit low today, said it was a very busy day yesterday and an unpleasant procedure.
He loved seeing Marley, Kingsley and Sam and this seemed to cheer him up. Sam did really well with the new board.
Nige has set some goals with his team.
Nige sat in his chair for 2 hours this morning and is tolerating it much better. He’s working so hard so is napping now before Frankie arrives.
Nige went to St Michaels hospital today for an endoscopy on his larynx and everything is good! He said people were staring at him which was weird. He was sick today and felt sick so asked for ray to give him a jab. Nige was asleep when Mat got there so was tired, and he met Dan. Overall he seemed good
Nige was feeling a bit sick today and has a urine infection so not having the best of days. He wants Caroline to get presents for the staff which is really nice and shows he feels he is being well looked after.
Nige was sat out in his chair this morning and Nick has recorded his voice on the buzzer! Can’t wait to hear it!
Well when Nathan, Maddy & Harry arrived, Nige was hanging out in the nurses station in his chair!
They then all went to the lounge to hang out, which was lush. Nige was in his chair over an hour, and Sarah says he’s doing much better at tolerating the chair. No coughs in the chair too!
Nige in quite goods spirits but did get quite emotional as we were leaving. Chatted lots and Nige said he can’t wait for a burger!
Nige was sleeping when Nick arrived but was really happy to see him. When Nick woke Nige he didn’t make him jump as he normally does .
Nige had a good day, nurse said he sat out at reception for an hour this afternoon, talked loads was full of smiles and jokes. Nick left him watching a sports show…lol
Caroline saw Nige with Frankie and Mat this evening. Nige was very chatty and quite emotional. Nige fell asleep this afternoon and woke up when Mat arrived and thought it was Friday and that he had slept through a whole day which he found disorientating.
It was the Christmas party today at the BIRU and the staff were dressed up.
Nige told Mat that he wants to get his trachy out after Christmas and that he wants to go to Atomic Burger for his first meal out.
Caroline and Maddy attended Nigel’s 6 week review meeting at BIRU today. This was just to update us on how Nige is doing really, as they still cannot say how much Nige will improve. Having his cuff down will become more routine, and they want him in his chair twice a day.
Nige has dyspraxia, so although he has a voice with the cuff down, he can’t coordinate that with all the muscles needed to talk, and his SALT is working on this. No worries about Nige’s mental health or cognitive functions.
Nige had a visit from 2 music therapy students yesterday, which he loved! It was apparently very intense and emotional, and could become a weekly thing.
Nige was very chilled after a busy day, a bit tired but happy.
Caroline was with NIge today whilst he had OT and physio, 10 minutes with the cuff down, 1 and a half hours in the chair, hand bandaging and loads of limb manipulation.
Caroline read Nigel’s progress report and all good, although he does need encouragement to sit in his chair.
There is a new electronic spelling board from Special Effects which is amazing! Same principle as the cluster board but you press buttons for cluster and colour and it types out the letters.
Haydn and Jean visited today and could see huge improvements in 3 weeks.
Steve from Craddy’s also came in this afternoon and Frankie in the evening.
Maddy, Nathan, Harry and Mat Povey all visited Nige tonight.
Nige seemed a bit tired and was coughing quite a lot, but was otherwise good. He had a busy day in the gym so needed a rest. Nigel was laughing and joking lots.
Maddy put up his Christmas decorations in his room this evening.
Nige has had a haircut today! It was the Irish nurse and Sarah, they are so lush!
They also persuaded Nige to get in his chair and go down to the lounge for a bit and even outside very briefly as it was so cold. Still no luck getting Nige to shower but they are going to keep on at him and to go in his chair every day.
Nige has finally got a date to have his tooth fixed, 18th December.
Caroline has bought some Christmas decorations for Nigel’s room and has started to make it look a bit more Christmasie.
Mike viisted Nige tonight and stayed for about 2 hours. Had a really good chat and Nige was on good form.
Nige has been busy doing physio today in the gym, they are working him hard. Had a visit from Caroline, Maddy, Nathan and Harry, with Sally popping in this evening.
June and Mike spent the afternoon with nige and are really impressed with the unit and Nige’s progress. Lots if reminiscing about growing up in Guildford and apparently Nige was quite emotional at points.
Caroline and Gill visited Nige this afternoon, he was in good spirits and had been playing the nurses up all morning, refusing to have a shower! Caroline told him he needn’t expect bed baths when he gets home!
Some of the new nurses are suctioning Nige to have a competence signed off and Nige has been deciding whether they pass or fail. He was having loads of fun with that!
He’s looking forward to seeing June and Mike tomorrow
Nige ended up having a great day despite being disappointed that Jimi had to cancel his electric guitar set due to car trouble.
Caroline, Maddy, Nathan and Harry visited this afternoon. Well, just check out that leg movement!!!! So happy!
Helen also visited and brought James and Laura which was a lovely surprise. They chatted about prog rock and Helen showed him pictures of her new house. They haven’t seen him for ages and were astounded by the improvement in him.
Left Nige watching Man Utd v Arsenal
Caroline and Frankie had a nice visit tonight, though Nige says he is missing home.
Frankie played him lots of songs which he really enjoyed. He’s looking forward to Jimi playing for him on Saturday.
His left arm is doing amazingly, he can point at stuff which is great to see. He is also mouthing lots of words, increasingly clearly. Also lazy toes (right foot) were wriggling today.
Nige had a stunning day with the drummer from Radiohead, Phil Selway, who was a really lovely bloke. He did the board with Nige, chatted about music and even played guitar for him!
Nige did 10 minutes cuff down today and has also been on the tilt table.
Nige gets on really well with Sarah, one of the nurses, and spells out words like bollocks to her just for fun!
Nige had his trachy changed today.
Nige was wide eyed on point today and was showing off all the moves as well. He had a lot of visitors today and had a good day.
Really impressed with his leg, arm and lip movements.
Very busy day for Nige, Rob Hunt and his wife in this morning and then Caroline, Ralph, Katie, Maddy, Nathan, Owen, Ruby and Harry this afternoon! Owen had fun adding his name to all Nigels sentences and Katie did a fantastic job on the board, showing skill and empathy.
Left Nige watching Scotland slaughtering Australia in the rugby.
Nige was feeling a bit ill today but when Frankie and Caroline got there they cheered him up a bit. Had a pretty chilled visit with Frankie playing a few tunes.
Nige was like properly moving his arm which was amazing! And his leg. Lots of movement going on
Nige was in high spirits today! Lots of chatting and joking with Caroloine, Maddy and Harry.
We had a meeting with his Key Worker and it went well. No timescale given for trachy removal, it is a major goal but they have to make sure Nige is ready as it would be dangerous if done too soon. They are going to find out about Reuben visiting.
The SALT is reasonably confident that Nige will speak again.
3 months ago we were told Nige might get some finger movement after a year…. Nige has come so far already.
Nige was feeling sick again today so they stopped his feed and gave him an anti sickness injection. He is really lifting his left arm and almost managed to lift his T-shirt up when he was feeling hot. Lots of knee bending going on, both legs and some movement in his right arm.
Nige managed 20 minutes with the cuff down today.
Nige seemed ok today not overly up or down. He doesn’t like the fan in his room, he finds it drying.
Mat visited Nige and they watched a film together.
Nige did a physio session today which went well.
Nige wasn’t great today – was sick a couple of times, said he didn’t like Sundays and was just not really having a good day.
Had a nice visit from Nick, Sam, Marley & Kingsley and Nige was showing his leg movement which is amazing!! Nick set up his catch up on his TV and left him watching Gilmore at Pompeii, Nige was super pleased.
Nige was in good spirits again this afternoon and enjoyed a visit from Gill and Lisa. He was in a mischievous mood, making jokes and loads of facial expressions and enjoyed watching the rugby together.
Nige is now able to bend his knees, both legs, what happens is there is some involuntary movement when he coughs and then he is able to control it. Dead exciting!
Nige was very sleepy this afternoon. He had been sick and got out of doing his therapies. Has had lots of visitors, 2 from work, Nick, Frankie, Caroline and Mat Povey.
Caroline and Mat played a random board game with him, and Nige thought it was hilarious
Nige has had a good and busy day. Nige has had OT/physio/psychology/SALT. He managed 10 minutes with the cuff down, the legend.
The highlight was obviously watching the video message which the wonderful Tina Britton organised for him! You can see this below and Nige watching it;
This is from Steve Wilson of Porcupine Tree- Nige’s favourite band.
Nige was in great spirits today! He is feeling a lot better, and was communicating with the staff with the board when Caroline, Maddy & Harry arrived.
Nige was very tired, and mostly just wanted to listen, but was laughing loads. He also told us that he is sure he is gonna make a full recovery (obvs!) He had the cuff down twice today!
Nige feeling better today but was uncomfortable due to sores from being on his back too much. He doesn’t like being on his side but did so for a bit.
Nige had OT and physio today including having his cuff down which is great.
Frankie and Mat visited this evening, Mat trimmed his beard and Frankie played guitar. Left him watching the England game.
Nige still feeling poorly, managed to get out of all his therapies today! Despite this, he managed to sign some forms with a brilliant X that he did all by himself
He had a long nap and was much more perky in the evening
Nige is not having a good day today as he has been sick and is feeling a bit rubbish. Frankie and Jimi cheered him up with their tales of the festival and playing him some tunes.
Nige is proper moving his left hand and Frankie got him to do some drawing on her phone. Whilst he was napping, his right big toe was proper wriggling!
Nige’s schedule for next week is busier than last week, they are really pushing him which is brilliant but exhausting.
Nige wasn’t feeling great today. He had been a bit sick overnight. He was moving his left leg a lot today and showing it off to visitors.
Nige was very tired after being ill overnight.
Nige has had a really busy day with physio/OT/SALT/phsycology and a visit from Nick, Sam, Marley and Kingsley! Sara also paid him a visit, she works with Eye Gaze with disabled children and was very impressed with how well Nige uses it.
Nige was worried about a growling noise he has just started making. There was some blood when he was suctioned and this added to his worry. However, the Dr checked his chest and all clear. Some blood is common due to the irritation of the trachy and suctioning. They are going to keep an eye on it. HOWEVER, the SALT said Nige shouldn’t be worried but delighted, as she thinks it is the beginning of a voice!
Nige is also doing a new thing with his face, if he’s saying yes but it is more of a ‘sort of’, he does this matter of fact look (his description). Nige also shot Carlonie a filthy look when she got what he was trying to say wrong! SALT are working on his facial expressions and its clearly working!
Mat Povey and Pete also visited and put the football on for him.
Nige was very tired today. Had been unwell overnight but was glad today was a rest day.
Left leg movements are now getting really strong and Nige loves showing this to visitors.
Nige had a special visit today
Nick and Sam took Kingsley in this morning so Nige could meet his new grandson Kingsley and Nige loved having a cuddle with him
Caroline and Frankie visited in evening. Frankie played him lots of songs which he loved including Isn’t He Lovely for Kingsley, who he lived seeing!
Well, he only moved his right leg! Yes, I did say right! He did it a couple of times and was dead chuffed about it!
Nige is going on the tilt board tomorrow. They are really pushing him and the nurse said they love a fighter!
Nige also did some talking with the Eye Gaze
What a stunning day.
Nigel’s family gained an additional member today. Kingsley Rex Povey was born at 2.30am. Congratulations to Nick, Sam and Marley.
Nige was told the news in the morning and can’t wait to meet his new grandson tomorrow.
Dad was given the message first thing and is delighted and loved seeing all the photos.
Duncan, Nigel’s brother who lives in France, visited today and was with him all afternoon and had a lovely visit, really interacting with Nige and having some laughs and some tears.
Caroline, Maddy, Harry & Sally also visited and Nige was keen to show his Eye Gaze. Duncan loved meeting Harry for the first time!
He thanked Sally for everything but was very tired and spelt out “Bye” on the Eye Gaze, bit of a hint!
Today was a very good day…….
Nige was in a really good mood today. Special Effects came in and set up his eye gaze which now has letters which is really cool. It is a bit slow at the moment and very tiring for Nige to use but they will speed it up when he gets more used to it.
Nige lifted his left arm off the bed!!!!! Did it a few times.
All the nurses are always going on about Nigels strong cough and seem to get really excited by it, Well Ray, one of the nurses, explained that this is because it means his upper airway is working properly and this increases his chances of being able to speak when the trachy comes out.
Nige got emotional about Christmas today but Caroline gave reassured him that the family will be with him.
Things are just coming along so fast since the move and it’s sometimes hard to realise just how far Nige has come already. We are finding out new things all the time and today Nick, Nigel’s son, brought up that back on the 27th August Nige spelt out his first word ‘Bank’, this was to Nick and Mat but as this was the first thing spelt the didn’t think much about it. It just shows how Nige has consistently exceeded the expectations set out and he continues to do so.
The SALT team are training people up on using the board. Nige has some movement in his left arm today which is very exciting!
Nige has told the SALT about his concerns of the new staff not being able to use the board effectively and hopefully they will be able to address this.
He’s had a busy morning and is having a nap now.
Evening update – Nige just moved his left leg as well!
Nige has good movement in his left thumb and has gained really good control of this. Enough to keep pushing a button repeatedly to make a sound system continually go off – Nige just giggled – a lot!
Nige had a lot of visitors again today but still managed to watch the football.
Nige had a session in the gym today which Carolione and Mat were there for. Nige did really well, holding his head up for 10 seconds on his own. However, they pushed him a bit too hard and he fainted, luckily he was sitting down. He was really tired afterwards
Nige has settled in well at Frenchay.
Had visits from Maddy & Harry and Sam & Marley.
Nige seemed in good spirits too, looked more chilled out sat in his chair with his tracksuit on! NIge had OT this morning and nothing else scheduled today.
Well, bad news I’m afraid, Nige will be going to Frenchay tomorrow morning, not today. The delay was due to the person in Frenchay being discharged later than planned today. All systems go for tomorrow!
Nige was in good spirits today and enjoyed seeing Andy and Tricia and all their holiday photos. He cheekily asked if Tricia had booked their next holiday!
Tearful goodbyes with Victoria and Lauren. God knows what he will be like when he says goodbye to Charlotte!
Nige was a legend and had his trachy changed! Caroline was with him and it was very unpleasant and he was very emotional afterwards but onwards and upwards to Frenchay!
Nathan visted today to watch the Man Utd vs Spurs game with Nige, Nige was in good spirits and happy with United winning.
We were advised that the trache has to be changed before Nige can be transferred to Frenchay. Nige refused it today but has to have it done tomorrow or he risks losing the bed in Frenchay. Nige is aware and promising to have it done tomorrow.
Today we found out that Nige will soon be moving from Southmead hospital to Frenchay. This is a great step forward in Nigels treatment and move his to a dedicated rehab center. This has been provisionally booked in for Monday!!!
Nick and Mat both visited Nige today.
Nige has a lot of mouth movements at the moment and whilst he cannot speak with the trachie in Nige believes he will be able to when it is removed.
Nige was in good spirits and had a lot of laughs.
Nige managed 35 minutes with the cuff down today and he could have done more, once the initial mega coughing has passed he seems to manage really well.
His left foot is also moving today! His left fingers are also coming along really well.
Nige spent some more time in the chair tonight and said he was much more sparky and communicative.
What a stunning day! Nige went outside in his chair with Caroline, Maddy and Harry. It was so lovely for him to feel the sun and the fresh air and he loved it. The physios and OTs are planning to take him to the gym next week to see if there are any other flickers of muscle movement. It will involve sitting on plinths. They are all so good with him and say they have been amazed by him every step of the way.
Nige had an ENT examination and his lesions are nothing to worry about, just a result of irritation by the trachy. He also had his trachy dressings changed which further irritated his throat and then did some cuff down time. Nige managed 20 minutes with minimal oxygen and Amy was really pleased with him.
Nige was quite emotional today and was going to have a sleep before Frankie visited this evening.
Nige has had a really good day. He did half an hour, yes that’s right HALF AN HOUR, with the cuff down. Nige was with the OTs when Caroline arrived and they showed her how to do some hand exercises with him.
The physios hope to take him outside on Wednesday afternoon.
Generally he was in good spirits 😍
Nige was tired after the shenanigans of last nights bed maneuvers! He is in the same bay but in a swanky new bed.
Caroline has told Nige that the chap from Radiohead is coming in, a week on Monday at 4pm. This has been arranged through the Eye Gaze Technology charity. Nige was well pleased.
Nige had a chest xray and all clear.
Wow!!!! Nige managed 9 minutes with the cuff down today! Caroline was with him and he did really, really well. Nige is very bright today.
Victoria, the nurse, gave him some Thatchers Haze on the sponge today and he loved it.
Anna and Tracey from Craddys have also visited with Rob due in later.
Well all that nagging from Sam and threats from Caroline to not bring Reuben in worked! Nige managed 4 minutes with the cuff down!!!!
Reuben, Nige’s dog, was taken in to see Nige by Caroline and Helen this afternoon. When they brought Nige out he was in his chair and even Caroline had to look twice as Nige was sitting upright and supporting his head brilliantly.
Nige stroked Reuben with his new thumb action and Reuben put his front paws on his lap.
The highlight of the day was that Caroline was able to sit on Nigels lap and have a cuddle.
The physios and OTs have set a goal to get Nige outside, hopefully next week.
Nige really doing left hand movements today!
During physio today they mentioned they were seeing flickers and supporting Nigel’s hand to help him make more movements.
Nigel has refused cuff down again today but has promised to do tomorrow or Caroline threatened to not bring Reuben (their dog) in!
Full results from camera down throat tomorrow but they found a lesion which is common with trachys. ENT Dr will deal with this.
Sam saw Nige and he was very tired this morning, but seemed in good spirits. He was dreading the cuff today – something they have started doing to wean him off the trach yesterday but he hated it and stopped it straight away. He wasn’t looking forward to it today but appreciates it has to happen to move forward.
Nige has been on strike! Refusing turning and not wanting the cuff on his trachy down. He said he hates the trachy and Caroline told him the first stage in getting rid of it is to try to have it down for short periods. Nige is anxious about this but he has promised to try. Nige was tired but has perked up when Frankie and Jimi arrived.
Today they also did the camera down his throat and the great news is that Nige can swallow! They gave him some apple puree!
Nige was in good spirits today and spent 1 hour 10 minutes in his chair. He found this very tiring and had a good rest after. Nige is using the EyeGaze technology more regularly and getting good practice in.
Nige had a terrible night as there is a new patient who constantly shouts out but they both need to be in high obs bay. Thankfully he settled late in the morning.
Nige went for a wander in his chair down the end of the corridor and saw the outside for the first time in ages. His nurse today was really lush and communicated with him really well. The trachy is making him cough so much but they are beginning to wean him off it this week.
The thumb is phenomenal! Proper movement.
Sam and Marley visited in the morning and had a lush visit, Marley gave grandad a big kiss on the lippies 🙂 Nige was in the chair and said he’d been out of the ward that morning. Sam saw the thumb wiggle which is amazing, and sorted out the man united game for when we left.
Maddy, Nathan, Owen, Ruby & Harry visited in the afternoon and he was good, they arrived just when the match finished. Nige still showing off the thumb! Kids both chatting to him loads and making him laugh.
Nige was coughing loads, but bringing it all up.
Nick visited Nige and he was amazing full of laughter and chat had a lot to say and had a really good catch up. Nick said that in the 2 weeks he’d not seen him it was easy to see the massive improvements on moving and making it obvious what he’s on about.
Nige was moving his thumb a lot today. The doctors are discussing weaning him off the trache, which he is understandably quite anxious about. They also want Nige to go on the tilt table again. Also, Reuben has been invited back next week!
Nige is moving his left fingers and thumb. His OT also thinks there is movement in his hamstring. The night staff have all been told to be more attentive to Nige.
Nige now has a nurse from Enhanced Care called Alison, which was arranged by his SALT, Victoria. She will be very involved with his Eye Gaze and making sure Nige gets the more intensive nursing care he needs.
Nigel’s daughter Frankie and her boyfriend Jimi visited this evening, and played him 5 or 6 songs on guitar, which he loved.
Nige saw a psycologist today, but declined any psycological intervention. He has a hand massage, which sent him to sleep, and worked a lot with the SALT today.
Nige saw his brother Ralph and neice Katie today. Katie is only 7, and really enjoyed using the letter board. Nige wriggled his right toes, which Katie excitedly told the nurse! Nige was chesty again today, but bloods came back clear. His sister in law Gill saw him for the first time in a while, and she said he was the best she had ever seen him.
Nigel’s son in law Nathan ran the Bournemouth 10k today, and raised £350 for the Stroke Association.
Nige was sick overnight, but felt fine today. They are not sure why he is being sick. Frankie played guitar for Nige this morning, and when others visited in the afternoon he was chatty and in very high spirits.
Nige was coughing quite a lot today, and finding this quite stressful. He worked on the computer with Victoria.
Nige was OK today, just a bit coughy. Victoria, the Speech and Language Therapist is going to upload some more phrases onto his computer. Caroline saw his fingers move a little bit, and one of the nurses said that when she moves Nige, he no longer feels like a dead weight.
Today, Nige began using Eye Gaze technology! It is a computer which responds to his eye movements. At the moment, he is able to select music, radio stations, view photos and select some basic phrases. More will be added as Nige becomes more confident with the technology. He did really well, but it is tiring for him. It is on loan to Nige for as long as he needs it. He also went down to a balcony on his chair for fresh air.
Nigel’s son Nick gave his tache a trim today, as it was tickling his nose! Marley, Nigel’s grandson, visited, and was much more comfortable with Grandad than previously, which cheered Nige up.
Nige can now wriggle his toes! He has been focussing on his left foot, and is now able to wriggle 4 toes on that foot. He also mouthed the word ‘One’ very clearly. No sound, but it was very easy to read his lips. Today was a great day.
Nige had a procedure today to fit a smaller trachy. It was uncomfortable and unpleasant for him, so he got a bit down. But the smaller trachy is great progress, and it will eventually be removed. He cheered up by the evening, when Mat visited. He read a few chapters of a book written by a survivor to Nige, a lot of which was very relatable, and Nige enjoyed it but found it emotional. He is now off antibiotics, and his chest infection is clearing up nicely.
Nige was bright and communicative today. His head and mouth movements were amazing. He sees to be making shapes with his mouth, and laughing without sound. He was remembering his time in ICU and got very emotional. Caroline and Nige met up with a charity called Headway, who provide emotional support for stroke victims and their families. Nige is now being seen by an additional speech therapist who specialises in strokes.
Nige was sick again today, and they think it is because of the timing and management of his feeds, so this will be adjusted. His referral to Frenchay has been accepted, but it will be a while before he is transferred.
Nige told the consultant today that he sometimes feels ignored. He has been given a bell, which he can use with his head movements, to attract attention.
Nige was very tired in the morning, as he did not have a good night sleep. He perked up by the evening though, using the board very well and even attempting a laugh!
Nige has been referred to rehab at Frenchay. This will be when his general health is good enough, and will aide his recovery tremendously. His friend Deon, an Occupational Therapist, saw him, was very impressed and put his mind at ease about his care upon discharge.
Nige spent some time in his chair, and will hopefully get to go outside again next week.
He is still on antibiotics for his chest infection.
Nige was a bit low in the morning, as he has picked up a second chest infection. It is being treated with antibiotics, and he felt much better by the afternoon. When family visited, he was joking around a lot with them. The nurses commented on handover ‘Nige was feeling poorly earlier, but his family sorted him out!’
The SALT has commented on Nigel’s improved mouth movements, and this has apparently caused quite a stir in the department! His neck control was very good today.
Nige was very communicative today. He is coughing a bit more, but he is getting more used to the process. Frankie played guitar for Nige in the evening, which he and the rest of the ward loved!
Nige spent some time on a tilt board in the morning, to help improve his stregnth and get him used to being upright. It was very tiring for him, but he did really well. He had a visit from a therapy dog called Flash, which he loved. He will be visiting every week. His SALT discussed doing a procedure called FEES, which will assess Nigel’s swallowing. He hardly coughed at all today.
Nige had an X-Ray, which was all clear. He had 3 sessions with the physios and sat in his chair for an hour. He moves his head a lot when he is in the chair.
Caroline saw the consultant who said Nige is making good progress, but that he will be in hospital for a very long time.
Nige was sick this morning, which was unpleasant for him. He will have an X-Ray tomorrow, just a s a precaution, to make sure there is nothing on his chest. He was very bright and communicative today, smiling loads, and the nurses are interacting with him really well. Mat read some of ‘Running Free’, by Kate Allatt, a Locked In Syndrome survivor, which Nige enjoys.
Nige is smiling a lot today! Much more definite than before, and even attempting a giggle!
Nigel’s dog Reuben vivited him today, which he loved! Also, Special Effects saw Nige again today, and they brought some Eye Gaze technology. He did really well with the activities, which involved having to concentrate on different parts of a screen. They are very impressed with him. They are going to work on some equipment more tailored to Nige, and will be back with it in a couple of weeks.
Nige had an operation to put his feeding tube into his stomach, which went well.
Nige was bright again today, and moving his head a lot. Caroline saw the psychologist and she gave her some relaxation/mindfulness/guided visualisations to do with Nige, which he enjoyed.
Nige was bright today. He really likes his Health Care Assistant, Charlotte. She and the rest of the ward staff are taking very good care of him,and communicating with him well. He is moving his head a lot more today,which is great as the movements had slowed down.
Nige saw a psycologist today. She is not too concerned about Nigel’s mental health, and did not recommend anti depressants. She suggests that the family all consult Nige on decisions, and that our communication with him is vital.
Caroline is not so impressed with the ward, as Nigel’s photos have all fallen down and left. They are communicating with Nige with cards, but he prefers the board. His movements have slowed down a bit, probably due to the move.
Nige completes his unfinished sentance from yesterday… ‘I WILL GET THE BASTARD!’ The bastard being the situation, not a person! He also had cuddles with his grandson Harry. He spent some time in his chair today. He is moved onto the neuro ward, but misses ICU a bit. The ward is a lot less personal, but is a step in the right direction.
Special Effects visit Nige, to assess his eye movement. They decide to meet Nige again, with a screen using technology called Eye Gaze. He is very emotional today, and decides that he would like to see a psychologist. His work on the letter board is progressing at an incredible rate. Today he spelt ‘Sue’ (favorite nurse), ‘Stop putting yourself down’ (advice to Caroline), ‘Tomorrow bring Haze,’ ‘He was cool’ about the man from Special Effects and ‘I will get the ….’ to be continued tomorrow as he was very emotional at this point. Nige has been smiling and moving his head and left arm. The consultant said the arms may be spasms but definitely not the head.
It is decided that Nige will have his feeding tube removed from his nose and will have an operation to put it into his stomach. He is to be moved out of ICU and onto the stroke or neuro ward, as soon as a bed becomes available.
He was bright and alert this afternoon. He spelt out the name of a Welsh footballer and that he could feel his feet and then moved his right foot. The nurse said there had been some arm movement again and he is also able to attempt a smile.
Nige is doing really well with his speech therapy again. Nigel’s son Nick, and Caroline work with the SALT and Nige says he wants to use the letter board with all of his visitors. He spelt Guildford and good nurse. He let Caroline know he wanted his eyes cleaning and to have the mouth sponge. He was also very emotional today. He is also moving his head, and arm very slightly. He is also puckering his lips, to ask for a kiss!
Physio and SALT are going really well and both are impressed with Nigel’s progress. He was on the ventilator in the morning, but off the rest of the day. His breathing is really good, and he only needs it to clear his chest. His chest infection is clearing really well, almost gone. The dentist is seeing Nige on Tuesday, and will either do a filling or remove the chipped tooth. It is causing him a bit of pain, so he is glad to get it sorted. Nigel’s grandchildren, Owen and Ruby visit for the first time, which cheerd him up. He also watched an England football match, so he’s happy!
Nige is really awake today, and very responsive. He is still moving his head slightly. His speech therapy went really well. He spelt his name and named his pets. It was tiring for him, but great progress.
Nige chips his front tooth! Just an accident, and a dentist is contacted. He is finding it hard to clear his secretions so they decide to do a tracheotomy, as expected.
The tube is removed, and temporarily replaced with an oxygen mask, just to help Nige until his breathing is strong enough on his own. Nigel’s daughter Maddy sits with the speech therapist, who says he was much more expressive with his eyes than her colleague described last week. She is contacting a charity, Special Effects, which makes electronic communication screens. But for now, Nige is using a low tech letter board to communicate. She is very impressed, and said it usually takes many weeks or months to achieve the progress Nige has. Maddy also speaks to Tim, who says that we are in unchartered waters, and significant recovery is very unlikely but possible. Nigel’s wife Caroline notices that Nige is moving his head! It is confirmed to not be a twitch, and Nige can do it on command.
It is decided that Nigel’s tube will be removed tomorrow.
The consultant Tim meets with all the family, in Nigel’s room. He lets us ask questions, and generally just talk about how Nige is amazing for being such a survivor, and that the road ahead will be long and difficult. We also discuss removing Nigel’s breathing tube, and the possibility of needing a tracheotomy is mentioned.
Nige starts Speech and Language Therapy (SALT) and physiotherapy. He uses an E-Tran board to communicate using eye movements. It has been established that looking up means yes, and closing his eyes means no.
Nigel’s brother Duncan visits. They had been estranged for many years, and only recently got back in touch. He travelled from France to see Nige.
Nick mentions to Caroline about the communication breakthrough.
Nige is told of his condition, and is very clear about what he wants: to keep fighting, of course!
Unfortunately, Nige picked up a chest infection. It is being treated, and he is coughing well.
Nick had been researching LIS overnight and found that a spell board could work. Whilst it is quite with just Nick and Mat in the room Nick tries to communicate with Nige using the board. Nigel spells out “BANK” to Nick. Nick ask’s if he would like people to know about the communication and Nige says no. It seems very tiring but is a big breakthough.
Nige survives the night. Many friends and family come back to the hospital. The consultant tells us that they will try to shed more light on Nigel’s condition. Many people go in to see and chat with him. No update is given until late in the evening, but all we are told is that the swelling on his brain is now going down, and will not kill him. Essentially, he was not supposed to survive, so the consultant does not know what the future will hold. He has already learned to communicate with vertical eye movements. The consultant plans on telling Nige the full extent of his condition in the morning, and asking him whether or not he wants to fight this.
Nige is taken into theatre. 2 clots in his brain stem are discovered, but the damage is too severe to operate. He is then sent to the Intensive Care Unit The family are called to the hospital, to be given the news that Nige is very unlikely to survive. It is apparent that he is still conscious, but unable to move. More family arrive. Throughout the day, the Neurosurgeon and ICU Consultant perform checks on Nige. In the evening, the family are told that Nigel only has hours, if not minutes to live. Family and friends begin to see Nigel for what they beleive will be the last time. Nige is not told of his fate. After many hours, a lot of family and friends go home, while Caroline, Nigel’s brother, Ralph, his wife, Louise, Nigel’s son, Mat, his sister-in-law, Gill and family friend, Sally, stay with Nigel overnight.
After feeling sick and dizzy for a few days, Nige is heard being sick, and suffers a seizure. He is rushed to A and E, where a brain stem stroke is diagnosed. His wife, Caroline, and son-in-law, Nathan are with him, and call Nigel’s 4 children to come to the hospital. Caroline stays with him overnight.