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!
Saturday, 24 September 2011
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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