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!

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!!

   

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

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.  

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 ;-)