After 8 weeks and 4 days Martin left hospital yesterday (Friday 11th).
It would good to say that he's home having made a full recovery but that's far from the truth at the moment. There's still quite a long way to go.
Having said that, it was really good to see him today back in his own armchair, TV remote control and laptop nearby. He didn't have a good first nights sleep and his eyes were particularly bad this morning but I'm sure that once he's had a couple of days to settle back in I think we'll start to see real progress and improvement.
It did seem strange to see him dressed in jeans and a shirt rather than in pyjamas!
Everyone is pleased to see him home especially Bruellan (4 legs, shiny coat, wet nose - unusual child ;-). As the ambulance bringing Martin home turned the corner, Bruellan was jumping up at the window...do dogs have sixth sense?
Part of settling back in at home is finding out how to get round the day to day problems like not being able to get upstairs for a shower, navigating the house in a wheelchair etc. So far so good.
Mart will now be having physiotherapy twice a week rather than each day as he did whilst in hospital. Not sure how effective this will be yet. It could well be that the rest in between each session will enable him to achieve more as hopefully he'll have built up the energy. But I suspect once he has settled back into the routine at home he'll be keen to push himself as much as possible to make progress. He knows his limits though.
What are the good things about being home? Food with taste - curry tonight and a beer! The not so good things (bearing in mind he hasn't seen any telly for nearly nine weeks) X Factor is still on ;-)
Funny how you really fancy certain food when you haven't been able to have it for a long while. Remember, Martins condition was triggered as a result of food poisoning whilst on holiday in Turkey and the tests have confirmed it was a dodgy bacon sandwich. So what does he really fancy...bacon and eggs for breakfast!!!
...and he still wants to go back to Turkey for holidays.
Hopefully Martin will post to the blog over the coming weeks, I know he's been absolutely overwhelmed by the concern and support shown by all his family and friends and particularly his work contacts who've helped to keep his business ticking over during a hugely worrying time.
As I said at the start of this post, there's a way to go and both he and his immediate family will still need loads of support. Why not leave them all a message, I know they'd very much appreciate it.
Saturday, 12 November 2011
Saturday, 29 October 2011
Stopping for a break
Anyway, back to the journey theme.
Martins journey to recovery is very much in progress and to date he's probably been travelling the A roads and about to join the motorway for the run to home. Things have slowed up in the last week however and the decision was made to restart the antibody treatment to kick start his progress.
I suppose it's the equivalent of stopping for fuel and having a break before continuing the journey (sorry - a bit cheesy I know)!
It was apparent that the physiotherapy wasn't helping to progress his recovery and Martin was still having a lot of discomfort from the pins and needles. His sight hasn't improved any further either...he's still seeing two clocks on the wall!
The week had started badly. I visited him on Monday night and he was really down. There have been staff shortages all week and on this particular day, help to get washed and to get to the toilet hadn't been readily available. Not being able to wash properly as he normally would really upsets him and it was made worse because he wasn't ready for his physio session. In fact the physios had to help with cleaning him up when they arrived to collect him. This meant the session was greatly reduced. When he returned to the ward his bed wasn't made from the previous night and didn't get made until about 5pm in the afternoon.
Perhaps all this doesn't seem too important considering how ill he's been and normally he would just get on with things, but it does tend to show how difficult life becomes as a result of his condition.
By Wednesday, he'd seen various doctors and consultants and had had numerous tests and checks. Seeing the consultant helped to emphasise his condition, particularly when he was asked to walk from his wheelchair to the bed which he wasn't able to do. It didn't seem like there was any understanding or realisation that whilst his outward appearance is pretty good (apart from his wobbly eyes) his mobility has nowhere near returned to normal. Perhaps we should be even more concerned that after completing the tests the doctor said 'I'm confused'!
But the decision was that Martin should be given a further course of the antibody treatment by intravenous drip to be be followed up with another MRI scan. As the course of treatment would be given over 5 days it immediately meant that the possibly of going home on Monday 31st was no longer an option.
So, he's now hooked up daily receiving the solution and ordered to rest. In fact, it looks like things could have been pushed on a little too fast so far so this is a chance for him to gain some strength and allow the treatment to kick start his continued recovery.
I don't think however that this is in anyway a setback. I just think this is part of a recovery process which isn't easy to predict precisely.
I'm absolutely positive that he'll very quickly restart the engine and get on his way!
Martins journey to recovery is very much in progress and to date he's probably been travelling the A roads and about to join the motorway for the run to home. Things have slowed up in the last week however and the decision was made to restart the antibody treatment to kick start his progress.
I suppose it's the equivalent of stopping for fuel and having a break before continuing the journey (sorry - a bit cheesy I know)!
It was apparent that the physiotherapy wasn't helping to progress his recovery and Martin was still having a lot of discomfort from the pins and needles. His sight hasn't improved any further either...he's still seeing two clocks on the wall!
The week had started badly. I visited him on Monday night and he was really down. There have been staff shortages all week and on this particular day, help to get washed and to get to the toilet hadn't been readily available. Not being able to wash properly as he normally would really upsets him and it was made worse because he wasn't ready for his physio session. In fact the physios had to help with cleaning him up when they arrived to collect him. This meant the session was greatly reduced. When he returned to the ward his bed wasn't made from the previous night and didn't get made until about 5pm in the afternoon.
Perhaps all this doesn't seem too important considering how ill he's been and normally he would just get on with things, but it does tend to show how difficult life becomes as a result of his condition.
By Wednesday, he'd seen various doctors and consultants and had had numerous tests and checks. Seeing the consultant helped to emphasise his condition, particularly when he was asked to walk from his wheelchair to the bed which he wasn't able to do. It didn't seem like there was any understanding or realisation that whilst his outward appearance is pretty good (apart from his wobbly eyes) his mobility has nowhere near returned to normal. Perhaps we should be even more concerned that after completing the tests the doctor said 'I'm confused'!
But the decision was that Martin should be given a further course of the antibody treatment by intravenous drip to be be followed up with another MRI scan. As the course of treatment would be given over 5 days it immediately meant that the possibly of going home on Monday 31st was no longer an option.
So, he's now hooked up daily receiving the solution and ordered to rest. In fact, it looks like things could have been pushed on a little too fast so far so this is a chance for him to gain some strength and allow the treatment to kick start his continued recovery.
I don't think however that this is in anyway a setback. I just think this is part of a recovery process which isn't easy to predict precisely.
I'm absolutely positive that he'll very quickly restart the engine and get on his way!
Sunday, 23 October 2011
Daily Routines
Over the last couple of weeks Martin has shown steady progress.
He now has a daily routine of physiotherapy which has focused on his ability to walk. It's clear that he's still some way from walking unaided but has managed a few paces forward and back between the parallel bars. The potential is that when he goes home he'll still only be able to walk with crutches and will rely mainly on a wheelchair to get around.
Going home may not now be that far off! Possibly in the next 1- 2 weeks. Simply the doctors have made it known that medically there's nothing else they can do other than control the discomfort and pain caused by the pins and needles which he still has. His recovery to full fitness is now all about his determination and aftercare such as physiotherapy that he'll continue to have for some weeks, possibly months.
Going home is not likely to be easy. Getting up stairs isn't really possible yet so it'll mean a bed downstairs as well as ensuring there's wheelchair access etc. But for all that I think going home will give him a real boost.
I've noticed that Martins co-ordination is getting much better...it must be because he managed to shave himself last night without cutting his throat!
His sight doesn't seem to be coming back quite as quickly. To give you some idea, he has a clock on the wall opposite his bed. If he looks directly at it he actually sees two clocks, one in the correct place on the wall, the other one appears to be on the ceiling!
He's starting to get around in his wheelchair and can even get into it himself which has meant he's less reliant on the nurses. It didn't quite go according to plan yesterday however. Trying to pull himself from the chair onto the bed he somehow managed to slip down into a heap on the floor. Typically his buzzer was out of reach so it was a case of waiting for help to arrive.
The cleaner got there first and raised the alarm with "Man On The Floor"! The nurses came running and hauled him back onto the bed. He was probably more embarrassed than any damage caused.
It did emphasise that he still lacks a lot of strength and control in his legs...'felt like spaghetti' he said.
The likelihood is that he'll be moved out of the side room into the main ward this week. I know he'll deal with that ok but it's been slightly disappointing in the way that the hospital have managed the situation. There definitely seems to have been some animosity towards Martin with regard to him being in a room on his own.
Perhaps it's because outwardly he appears to be relatively normal with regard to speech and appearance compared to other patients some of whom are distressingly unwell. Personally, I don't think he would have improved as quickly as he has without the opportunity to rest and control his surroundings. As this will mean that he'll leave hospital about a month earlier than we expected that has to be good...doesn't it??
The ward has a really wide scope of conditions to deal with. Mainly neurological related such as strokes etc where patients are bedridden. One or two patients have got mobility however, to the point where the nurses have to constantly monitor their whereabouts! Martin got something of a surprise when his door opened at 4am this morning when one of the other patients decided to go 'walkabout'.
This week will be all about planning for him coming home. Getting a bed set up, providing grab bars into the toilet, working out how to get him to daily physiotherapy. I'm sure he's ready though...he's been talking about escaping!!
Tuesday, 11 October 2011
One step back........
Today (Tuesday 11th Oct) has proved to be a difficult day.
The week had actually started well, Martin was in really good spirits at visiting last night having got a lot more feeling back in his right leg and assurance from his consultant that although his sight is still somewhat blurred, his eyes are starting to line up and he can follow movement equally. It really gave him a boost.
So why the setback? Today after physiotherapy Martin again had to ask to be washed as he'd been missed earlier. The ward sister responded by looking at his notes and demanded to know why his condition justified him being in a side room. Shortly after this another nurse told Martin that the senior staff has decided to move him out of his room to the main ward to enable them to deal with another patient who had an infection.
Whilst Martin is physically starting to make a reasonable degree of recovery, his emotional state is still very low. He became very upset at the prospect of moving onto the ward where most of the patients are elderly and suffering from varying degrees of strokes and other neurological conditions.
I guess we have all been aware that at some point there would be the necessity to move Martin from a single room, however, the whole situation could have been handled a lot better.
Perhaps it was because Martin became so upset that by the time afternoon visiting began the decision had been taken for him to stay put.
It's not necessarily the end of the situation however. The ward matron has emphasised that if the room was required, then a couple of days of Martin being 'down in the dumps' about being moved was acceptable.
Whilst we all fully understand the necessity for priority patients to take precedence for isolation rooms it did seem to present a real lack of understanding about Martins emotional condition which is really worrying.
In writing this blog I wanted to avoid any specific criticism of the care Martin has received during his time in hospital so far, however, todays events has left him extremely upset and with the prospect that he'll still have to move I think it's undone a lot of the progress he'd begun to show. With a more sensitive approach it could have been avoided.
It's difficult to know whether any of the distress caused today was a lack of experience in dealing with what is quite a rare condition or something more indicative of the treatment we might expect from the NHS reforms.
I know what I think: http://www.38degrees.org.uk/page/s/nhs-message-to-the-lords#petition
The week had actually started well, Martin was in really good spirits at visiting last night having got a lot more feeling back in his right leg and assurance from his consultant that although his sight is still somewhat blurred, his eyes are starting to line up and he can follow movement equally. It really gave him a boost.
So why the setback? Today after physiotherapy Martin again had to ask to be washed as he'd been missed earlier. The ward sister responded by looking at his notes and demanded to know why his condition justified him being in a side room. Shortly after this another nurse told Martin that the senior staff has decided to move him out of his room to the main ward to enable them to deal with another patient who had an infection.
Whilst Martin is physically starting to make a reasonable degree of recovery, his emotional state is still very low. He became very upset at the prospect of moving onto the ward where most of the patients are elderly and suffering from varying degrees of strokes and other neurological conditions.
I guess we have all been aware that at some point there would be the necessity to move Martin from a single room, however, the whole situation could have been handled a lot better.
Perhaps it was because Martin became so upset that by the time afternoon visiting began the decision had been taken for him to stay put.
It's not necessarily the end of the situation however. The ward matron has emphasised that if the room was required, then a couple of days of Martin being 'down in the dumps' about being moved was acceptable.
Whilst we all fully understand the necessity for priority patients to take precedence for isolation rooms it did seem to present a real lack of understanding about Martins emotional condition which is really worrying.
In writing this blog I wanted to avoid any specific criticism of the care Martin has received during his time in hospital so far, however, todays events has left him extremely upset and with the prospect that he'll still have to move I think it's undone a lot of the progress he'd begun to show. With a more sensitive approach it could have been avoided.
It's difficult to know whether any of the distress caused today was a lack of experience in dealing with what is quite a rare condition or something more indicative of the treatment we might expect from the NHS reforms.
I know what I think: http://www.38degrees.org.uk/page/s/nhs-message-to-the-lords#petition
Sunday, 9 October 2011
Bed discharges patient!
Bit of an eventful start to the week!
Martin had been having some problems getting comfortable in bed and had buzzed for someone to help him. It was taking sometime for anyone to respond so he tried to work the controls on what is quite a high tech bed.
It adjusts to all sorts of positions to enable him to sit up without any assistance and bend his legs to support movement as well as preventing bed sores. It also flattens right out, in Martins case sometimes a bit unexpectedly, but more about that in a moment.
Anyway, there he was trying to work the controls on what looks like the remote for a TV set clipped onto the bed rail. The bed started to flatten out. In principle that shouldn't have been a problem except the side rails didn't function as expected and he ended up hanging out of the bed with one leg still caught up in the rails.
He couldn't grab the buzzer, as at this point he still hadn't got the co-ordination or strength to make his arms do what he wanted them too. Next thing he fell out of bed completely and ended up in a heap on the floor. Luckily his speech is a lot better and at the third shout for help the nurses arrived.
By all accounts they were a little surprised to see him on the floor. It was a 'what are you doing down there' sort of reaction. His sense of humour is still intact, he said 'it's a bit hot so I thought I'd see if it was cooler down here'. I think he made it into the accident book and the night staff won't now let him sleep with his door shut!
The bed seemed to have developed a mind of it's own. A couple of times it flattened abruptly without warning, so the bloke with the spanners arrived and took it away. A fresh bed arrived and no more problems as yet!
We arrived for visiting one evening to find Mart wearing a pair of specs that Jack Duckworth might have picked up from a car boot sale in the seventies. The left lens was frosted over (actually, it was some kind of sticky tape) to enable his right eye, which is his strongest so far to give him some comfortable sight. His sight in the left eye will come back, apparently it's the sixth nerve which hasn't recovered as yet....but it will.
To give you some idea, without the frosting over the left lens Martin has some sight in both eyes but the pictures he sees in each eye are in different places!
Martin has begun to feed himself as the week has progressed. Initially he had to use a spoon, simply for safety as using a fork with poor co-ordination meant that he was stabbing himself in the face! The best thing is that he's on nearly normal food now rather than the pureed liquid that he was having.
Everyday things that most people take for granted are a real effort for Martin. He had his first shower for four weeks but it drained him (pardon the pun). As he's not able to support himself in any way he had to be lifted out of bed and wheeled into the shower room. He was helped into what looked like a plastic garden chair with holes in the seat to allow the water to drain away.
In his words, it was one of the worst experiences of his life...a bit like a manic roller coaster ride with him trying to hold on for dear life. I don't think he wants to repeat it for some time so it's back to the bed baths.
The biggest problem we have is stopping him from getting bored. As his sight is till not quite good enough he's unable to read properly or watch TV and there's only so much Radio 2 you can listen to. He continues to have loads of visitors though and I know this is helping him enormously, so I'd like to thank everyone on his behalf. The ward staff have continued to turn a blind eye to the number of people that sometimes crowd into his room which has been great.
We're getting the idea that at some point Martin might be moved to a transitional care centre to continue his recovery. I guess this could only happen when he has more control over his movement but time will tell.
As ever, please leave any comments and encouragement for Martin. I know he'll really appreciate it.
Martin had been having some problems getting comfortable in bed and had buzzed for someone to help him. It was taking sometime for anyone to respond so he tried to work the controls on what is quite a high tech bed.
It adjusts to all sorts of positions to enable him to sit up without any assistance and bend his legs to support movement as well as preventing bed sores. It also flattens right out, in Martins case sometimes a bit unexpectedly, but more about that in a moment.
Anyway, there he was trying to work the controls on what looks like the remote for a TV set clipped onto the bed rail. The bed started to flatten out. In principle that shouldn't have been a problem except the side rails didn't function as expected and he ended up hanging out of the bed with one leg still caught up in the rails.
He couldn't grab the buzzer, as at this point he still hadn't got the co-ordination or strength to make his arms do what he wanted them too. Next thing he fell out of bed completely and ended up in a heap on the floor. Luckily his speech is a lot better and at the third shout for help the nurses arrived.
By all accounts they were a little surprised to see him on the floor. It was a 'what are you doing down there' sort of reaction. His sense of humour is still intact, he said 'it's a bit hot so I thought I'd see if it was cooler down here'. I think he made it into the accident book and the night staff won't now let him sleep with his door shut!
The bed seemed to have developed a mind of it's own. A couple of times it flattened abruptly without warning, so the bloke with the spanners arrived and took it away. A fresh bed arrived and no more problems as yet!
We arrived for visiting one evening to find Mart wearing a pair of specs that Jack Duckworth might have picked up from a car boot sale in the seventies. The left lens was frosted over (actually, it was some kind of sticky tape) to enable his right eye, which is his strongest so far to give him some comfortable sight. His sight in the left eye will come back, apparently it's the sixth nerve which hasn't recovered as yet....but it will.
To give you some idea, without the frosting over the left lens Martin has some sight in both eyes but the pictures he sees in each eye are in different places!
Martin has begun to feed himself as the week has progressed. Initially he had to use a spoon, simply for safety as using a fork with poor co-ordination meant that he was stabbing himself in the face! The best thing is that he's on nearly normal food now rather than the pureed liquid that he was having.
Everyday things that most people take for granted are a real effort for Martin. He had his first shower for four weeks but it drained him (pardon the pun). As he's not able to support himself in any way he had to be lifted out of bed and wheeled into the shower room. He was helped into what looked like a plastic garden chair with holes in the seat to allow the water to drain away.
In his words, it was one of the worst experiences of his life...a bit like a manic roller coaster ride with him trying to hold on for dear life. I don't think he wants to repeat it for some time so it's back to the bed baths.
The biggest problem we have is stopping him from getting bored. As his sight is till not quite good enough he's unable to read properly or watch TV and there's only so much Radio 2 you can listen to. He continues to have loads of visitors though and I know this is helping him enormously, so I'd like to thank everyone on his behalf. The ward staff have continued to turn a blind eye to the number of people that sometimes crowd into his room which has been great.
We're getting the idea that at some point Martin might be moved to a transitional care centre to continue his recovery. I guess this could only happen when he has more control over his movement but time will tell.
As ever, please leave any comments and encouragement for Martin. I know he'll really appreciate it.
Saturday, 1 October 2011
Free gym membership
Each
day Martin seems to show more progress, particularly his speech which
is almost back to normal, except when he gets tired or stressed and then
he does a good impression of Joe Pasquale!
He was moved to the neurology ward last Saturday evening but by Monday morning he was in a room on his own. Apparently, when the consultant did his rounds he wasn't best pleased that Martin was in the open ward and obviously not getting the care he needed. In fact he had become dehydrated simply because he hadn't got the strength and co-ordination to help himself to drinks. I think that being in a single room is definitely helping. He's getting better rest and sleep although he's still having 4 hour observations. Visiting is a lot easier, we all just pile into his room! In fact, at one point during the week I think we broke the world record for visitors round a hospital bed - 8 of us! Suspect we won't get away with that if Mart is moved back onto the open ward. After a couple of false starts this week Martin has begun what's likely to be daily physiotherapy in the hospital gym. It seems as though the physios are pleased with his progress so far although he still has a way to go to gain full control over his muscles and co-ordination. It's coming though, I've noticed that as the week has progressed he's been able to lift a cup (Tommy Tippee style) and give himself a drink. This is a big step forward! It's especially good because it reduces his reliance on the nursing staff who in honesty haven't always got the time or sometimes even the language skills to apply the care we know they'd like to. This happened on Thursday evening, remember his speech is not 100%, but it's pretty close.... Martin: (buzz) "Nurse, could I have a blanket please, its a bit cold in here" Nurse: "Paracetamol?" Martin: "No, I'm cold, could I have a blanket?" Nurse: "Paracetamol?" Martin: "No, a blanket, I'm cold". The nurse disappears for quite some time and returns later with...liquid paracetamol! Martin takes it anyway so's not to cause offence....it helps. Martin: "Nurse, could I have a sheet?" Nurse: "Blanket?" ....you get the idea! What affected me most this week and gave me some idea of how this nasty disease affects anybody was when Martin described how for the first time in weeks he was supported on to his feet. Although he knew he was standing and the floor was beneath his feet, he had no feeling whatsoever. Totally numb. But, overall, it's still enormous progress over the week. As Mart is already being asked whether he has a big house does it means an earlier than expected release from hospital? Hopefully, this weekend we get to wheel him around the hospital for some fresh air....where's the nearest pub ;-)
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Saturday, 24 September 2011
A change of scenery
It's not been a good few days. The water infection that began earlier in the week has caused Martin to feel very ill. It took a couple of days for the type of infection to be confirmed so he could be given the correct antibotics that wouldn't interfere with the treatment for the Guillain Barre.
He really gave us cause for concern, any progress he'd made seem to have been lost. He developed a high temperature and was in a lot of pain. We had to restrict the visits as he needed to rest. Even his speech, which had started to become clearer returned to being very laboured and slurred and was totally exhausting him.
It was a reminder that even though Martin had previously made a lot of progress, it's still a serious condition which will take some time to recover from.
I wasn't sure what to expect when I visited him today, but I was amazed at the improvement in 24hrs. He had a better colour (apart from the Turkish suntan ;-). But the biggest suprise was his speech, not only had it become far clearer than it's sounded to date...it actually sounded like Martin again!
Nearly all the monitoring and feeding equipment has been removed and he's started to eat although it has to be liquidised...no roast beef and yorkshires just yet!
Just before he had his dinner we heard that a bed had become available on the neurology ward and he'd be moved once he'd finished eating.
It caused mixed feelings, the care and attention Mart has received on the critical care unit has been excellent and knowing and experiencing this ourselves helped all of us to deal with the trauma of a very distressing situation.
But he said himself that being moved would help. Any decent sleep had been difficult due to the constant care and monitoring that both he and all the patients needed. Besides which it was a good indication that he'd progressed enough to leave the critical care unit.
When I visited him tonight it was yet another reminder that he's still very ill. The move had drained him. It also raised our concerns again that the level of care available would not be enough to support him as he still needs to be fed and helped to drink. He hadn't even got the strength to properly use the buzzer to call for help if he needed it.
Seeing him like that it was again very hard to leave him tonight especially as he'd been in quite good spirits earlier. Hopefully he'll be able to get some decent sleep tonight and tomorrow will see him settled in and continuing to improve.
Perhaps the best advice we've had is to look on any progress over the course of a week rather than on a day by day basis. That's certainly been true given the ups and downs of this week. We also know now that his sight is likely to be the last thing to return as this was one of the first senses to be lost.
I think this is the time when family and friends support will be as critical as the nursing care and therapy he'll receive.
Give him a real boost. Leave a message and I'll make sure he knows how much everyone wants him to get back to the Martin we know as soon as possible!
He really gave us cause for concern, any progress he'd made seem to have been lost. He developed a high temperature and was in a lot of pain. We had to restrict the visits as he needed to rest. Even his speech, which had started to become clearer returned to being very laboured and slurred and was totally exhausting him.
It was a reminder that even though Martin had previously made a lot of progress, it's still a serious condition which will take some time to recover from.
I wasn't sure what to expect when I visited him today, but I was amazed at the improvement in 24hrs. He had a better colour (apart from the Turkish suntan ;-). But the biggest suprise was his speech, not only had it become far clearer than it's sounded to date...it actually sounded like Martin again!
Nearly all the monitoring and feeding equipment has been removed and he's started to eat although it has to be liquidised...no roast beef and yorkshires just yet!
Just before he had his dinner we heard that a bed had become available on the neurology ward and he'd be moved once he'd finished eating.
It caused mixed feelings, the care and attention Mart has received on the critical care unit has been excellent and knowing and experiencing this ourselves helped all of us to deal with the trauma of a very distressing situation.
But he said himself that being moved would help. Any decent sleep had been difficult due to the constant care and monitoring that both he and all the patients needed. Besides which it was a good indication that he'd progressed enough to leave the critical care unit.
When I visited him tonight it was yet another reminder that he's still very ill. The move had drained him. It also raised our concerns again that the level of care available would not be enough to support him as he still needs to be fed and helped to drink. He hadn't even got the strength to properly use the buzzer to call for help if he needed it.
Seeing him like that it was again very hard to leave him tonight especially as he'd been in quite good spirits earlier. Hopefully he'll be able to get some decent sleep tonight and tomorrow will see him settled in and continuing to improve.
Perhaps the best advice we've had is to look on any progress over the course of a week rather than on a day by day basis. That's certainly been true given the ups and downs of this week. We also know now that his sight is likely to be the last thing to return as this was one of the first senses to be lost.
I think this is the time when family and friends support will be as critical as the nursing care and therapy he'll receive.
Give him a real boost. Leave a message and I'll make sure he knows how much everyone wants him to get back to the Martin we know as soon as possible!
Wednesday, 21 September 2011
Another day of improvement
Another day and Martins speech had improved even more. It still isn't easy for him, the best way I can describe it is like trying to talk with a mouthful of toffee after having several injections at the dentist.
He was having some problems tonight because the light over his bed was making his eyes very sore, so much so that it was causing him to have quite a headache. He has been opening his eyes much more today so this could be a sign that his sight is beginning to return?
I've found it very difficult to describe his overall condition and the way he looks...everyone who sees him for the first time is generally shocked and upset. Even though I've seen him every day since he's been in hospital it still upsets me, especially when we say have to say goodbye.
I did think about taking some photos but I know this wouldn't be a time that Martin would necessarily want to be reminded of, perhaps once he's really starting to make some progress I'll be able to post something.
He's had loads of visitors, both friends and family and everyone's had chance to write something in a diary by his bed. It'll give him chance to fill in the gaps when he's well enough to read it and probably embarrass him totally as well!
He was having some problems tonight because the light over his bed was making his eyes very sore, so much so that it was causing him to have quite a headache. He has been opening his eyes much more today so this could be a sign that his sight is beginning to return?
I've found it very difficult to describe his overall condition and the way he looks...everyone who sees him for the first time is generally shocked and upset. Even though I've seen him every day since he's been in hospital it still upsets me, especially when we say have to say goodbye.
I did think about taking some photos but I know this wouldn't be a time that Martin would necessarily want to be reminded of, perhaps once he's really starting to make some progress I'll be able to post something.
He's had loads of visitors, both friends and family and everyone's had chance to write something in a diary by his bed. It'll give him chance to fill in the gaps when he's well enough to read it and probably embarrass him totally as well!
Tuesday, 20 September 2011
One step forward.....
The positive signs continue. Whilst it still took an enormous effort, Martin was able to say more words tonight that were clear and understandable.
He's been able to eat a few mouthfuls of yogurt today (yesterday...just realised it's tomorrow) which is his first normal food for more than a week. Everything up till now has been liquid and fed to him through tubes. It seems that there's even the potential he may be moved over the next couple of days, probably to the neurology ward.
However, he's now got a water infection which has really dragged him down. It seems strange to say that the infection is making him feel ill when he still has so many other problems to overcome but perhaps that's the measure of the progress we think he's already made.
As he's had such incredible care in the unit I think we all hope he's not moved until the water infection is completely clear. The test results should be back tomorrow and he'll be treated with antibiotics according to the type of infection they've identified.
It seems incredible that within a week Martin has been to such a low point, where we were so concerned and sick with worry about the outcome, to now, where we can maybe, really start to hope that the recovery process might have begun.
The nurses and doctors made us aware that he would hit the low before beginning an upward journey to what we hope will be a full recovery. They are very careful however not to built our hopes and do remind us how seriously ill he still is, but there are some really positive comments on Martins progress.
I called this blog the road to recovery. Perhaps, he's not actually travelling just yet, but he might just have started the engine!
He's been able to eat a few mouthfuls of yogurt today (yesterday...just realised it's tomorrow) which is his first normal food for more than a week. Everything up till now has been liquid and fed to him through tubes. It seems that there's even the potential he may be moved over the next couple of days, probably to the neurology ward.
However, he's now got a water infection which has really dragged him down. It seems strange to say that the infection is making him feel ill when he still has so many other problems to overcome but perhaps that's the measure of the progress we think he's already made.
As he's had such incredible care in the unit I think we all hope he's not moved until the water infection is completely clear. The test results should be back tomorrow and he'll be treated with antibiotics according to the type of infection they've identified.
It seems incredible that within a week Martin has been to such a low point, where we were so concerned and sick with worry about the outcome, to now, where we can maybe, really start to hope that the recovery process might have begun.
The nurses and doctors made us aware that he would hit the low before beginning an upward journey to what we hope will be a full recovery. They are very careful however not to built our hopes and do remind us how seriously ill he still is, but there are some really positive comments on Martins progress.
I called this blog the road to recovery. Perhaps, he's not actually travelling just yet, but he might just have started the engine!
Monday, 19 September 2011
Early hope?
I didn't intend updating the blog every day, but only when there is some noticeable progress in Martins condition.
Now we've all managed to source some information and have a better understanding, I think we're all holding back a little to avoid raising any early hopes.
Having said that Martin seems more responsive tonight and we definitely think he's able to see a little.
His eyes are less cloudy. Previously it looked as though he had cataracts in both eyes, but now look much clearer.
He seems calmer and has been able to say a few things although it's still very difficult for him to form the words and he gets incredibly tired very quickly.
He has some very sexy footware now! Ugg boots they're not!
These are to keep his tendons straight as this can be an issue later on. Similarly his hands are being monitored for the same reason although this isn't a cause for concern at the moment.
Just small things maybe, but real reasons for hope
Sunday, 18 September 2011
Early days
We've all quickly fallen into the routine of hospital visits. But its definitely not a cause for complaint because everyone's desperate for some signs of progress.
I think we are all willing Martin to defy the odds and bounce back quickly, but the reality is that it's unlikely.
What I do know is that Martins determination will give him the best chance of a good recovery as soon as possible, with huge support from all his family and friends.
During the early stages it's very apparent that it's a case of bad days and not so bad days. Night times seem to be especially difficult at the moment as he constantly pulls out the line from his nose which allows medication and other liquids to be given.
It seems like he's getting quite agitated, possibly it's the discomfort of the tube, or perhaps it's pain associated with the way the disease is attacking his nervous system. What's really distressing is not being able to understand him when he tries to tell us how he feels and what he wants.
Because Martin is in a critial care unit visiting times start from 6.30am till 9.30pm and so far most of the hours in any one day are being covered by either friends or family. It's strictly only two visitors per time at the bedside so a lot of time is being spent in the family room talking, laughing and having a good cry together when we need to. Anything to help support each other.
As everybody comes back from spending time with Martin we listen hopefully for the next small sign that there is a change in his condition, that he's reached the bottom and has started his recovery.
Small things like a nod or shake of the head, a yawn or even a laugh. Or even 'who scored' when he was told Tottenham were winning 1-0.
He's had a radio playing most of the time which hopefully we can tune to let him listen to the Ipswich Town game tomorrow evening...or perhaps not, it would probably give him a relapse. A bit insensitive...not really - it made him laugh!!
If there is anything that keeps us filled with hope and confidence that Martin is being given the best possible chance of good recovery it's the professionalism and dedicated care of the nursing staff in the unit. It doesn't get any better than that.
Let's hope this is a crucial area of the NHS left well alone.
I think we are all willing Martin to defy the odds and bounce back quickly, but the reality is that it's unlikely.
What I do know is that Martins determination will give him the best chance of a good recovery as soon as possible, with huge support from all his family and friends.
During the early stages it's very apparent that it's a case of bad days and not so bad days. Night times seem to be especially difficult at the moment as he constantly pulls out the line from his nose which allows medication and other liquids to be given.
It seems like he's getting quite agitated, possibly it's the discomfort of the tube, or perhaps it's pain associated with the way the disease is attacking his nervous system. What's really distressing is not being able to understand him when he tries to tell us how he feels and what he wants.
Because Martin is in a critial care unit visiting times start from 6.30am till 9.30pm and so far most of the hours in any one day are being covered by either friends or family. It's strictly only two visitors per time at the bedside so a lot of time is being spent in the family room talking, laughing and having a good cry together when we need to. Anything to help support each other.
As everybody comes back from spending time with Martin we listen hopefully for the next small sign that there is a change in his condition, that he's reached the bottom and has started his recovery.
Small things like a nod or shake of the head, a yawn or even a laugh. Or even 'who scored' when he was told Tottenham were winning 1-0.
He's had a radio playing most of the time which hopefully we can tune to let him listen to the Ipswich Town game tomorrow evening...or perhaps not, it would probably give him a relapse. A bit insensitive...not really - it made him laugh!!
If there is anything that keeps us filled with hope and confidence that Martin is being given the best possible chance of good recovery it's the professionalism and dedicated care of the nursing staff in the unit. It doesn't get any better than that.
Let's hope this is a crucial area of the NHS left well alone.
Saturday, 17 September 2011
Hard to believe
So this time last week our brother Martin was fit and reasonably well, apart from the left overs of a bout of food poisoning which started during a recent family holiday in Turkey.
Now he's in a high dependency ward with a long road to recovery in front of him.
It's been a long week and still pretty hard to understand how someone so fit and young (ish) ;-) can be struck down by a disease that I don't think any of us in the family had even heard of.
The disease is Guillaine-Barre Syndrome or at least the Miller-Fisher variant of it. It's a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness.
Does that make me sound like some sort of expert...not really, it doesn't take much to source the info via a search engine.
What I do know is that Martin has an extreme feeling of pins and needles in his arms and legs, he has very little muscle strength, he isn't able to talk and can't see. He's wired up to every form of observational monitoring you could think of. The only way I could describe his condition is to liken it to someone who's been on the worst bender you could think of, with no ability to do anything for themselves. His speech is incredibly slurred and mostly impossible to understand.
Probably the most distressing thing that any of us have experienced.
It started with double vision on Sunday 11th, by Monday he was unable to stand although his speech was still ok.
He was rushed into hospital having been checked for a stroke and cardiac failure which were ruled out.
He was admitted to an isolation ward due to the possibility of spreading what could have been a viral infection. By Tuesday his speech had become very slurred and movement was becoming more and more difficult. His sight had also deteriorated badly.
Following a lumber puncture, MRI and CAT scans plus various other tests, Martin was moved on Wednesday to a high dependency ward as his condition had worsened significantly. By now his sight had completely failed. All the family gathered at the hospital that evening....not a good time.
By this time we were learning that the potential diagnosis was Miller-Fisher Syndrome. It sort of helped to at least know there was a diagnosis and hopefully treatment could start. I don't think any of us realised at that point the full implications of what is a devastating and shocking illness.
So, one long week later and based on our Internet expertise we have some idea of the long road ahead. It might be a long road but we know where we're going!
Martin is likely to have some big gaps in his life over the next few months but hopefully this blog will help...
Now he's in a high dependency ward with a long road to recovery in front of him.
It's been a long week and still pretty hard to understand how someone so fit and young (ish) ;-) can be struck down by a disease that I don't think any of us in the family had even heard of.
The disease is Guillaine-Barre Syndrome or at least the Miller-Fisher variant of it. It's a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness.
Does that make me sound like some sort of expert...not really, it doesn't take much to source the info via a search engine.
What I do know is that Martin has an extreme feeling of pins and needles in his arms and legs, he has very little muscle strength, he isn't able to talk and can't see. He's wired up to every form of observational monitoring you could think of. The only way I could describe his condition is to liken it to someone who's been on the worst bender you could think of, with no ability to do anything for themselves. His speech is incredibly slurred and mostly impossible to understand.
Probably the most distressing thing that any of us have experienced.
It started with double vision on Sunday 11th, by Monday he was unable to stand although his speech was still ok.
He was rushed into hospital having been checked for a stroke and cardiac failure which were ruled out.
He was admitted to an isolation ward due to the possibility of spreading what could have been a viral infection. By Tuesday his speech had become very slurred and movement was becoming more and more difficult. His sight had also deteriorated badly.
Following a lumber puncture, MRI and CAT scans plus various other tests, Martin was moved on Wednesday to a high dependency ward as his condition had worsened significantly. By now his sight had completely failed. All the family gathered at the hospital that evening....not a good time.
By this time we were learning that the potential diagnosis was Miller-Fisher Syndrome. It sort of helped to at least know there was a diagnosis and hopefully treatment could start. I don't think any of us realised at that point the full implications of what is a devastating and shocking illness.
So, one long week later and based on our Internet expertise we have some idea of the long road ahead. It might be a long road but we know where we're going!
Martin is likely to have some big gaps in his life over the next few months but hopefully this blog will help...
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