You've gotta have a laugh

Funny things happen to Marks body on occasions, some I write about some I don't, poor bloke needs some privacy, but this one is worth sharing.

Let me set the scene, Mark has a hospital bed, it has lots of controls. The head of the bed can come up, so he's sitting, it can have knee bend, feet lift and the bed can be lowered at the head or the feet whilst still remaining flat. When Mark gets into bed the head is raised because his abdomen spasms are so strong he can't lay down immediately, it has to be done in stages. The same first thing in the morning, he has to sit the bed up in stages so he can get ready to get out. Get the picture?? In the early days of him in hospital I wasn't allowed to use the controller, he thought I would fold him up like a pancake.

The other morning for some reason he was slowly letting the head of the bed down to lying when he called me in and said 'watch this'. He touched the bed controller and up jumped the covers in the region of John Thomas. He touched it again and up jumped the covers again. He did it again, I got the giggles then as Mark worked the controller in rapid succession John Thomas was doing a gig!! You've gotta have a laugh.

A week and a bit on and who is doing what??

The idea of having the nurse and carers in was to hand over the majority of the toileting, bathroom and heavy handling - how is that working? Well in terms of the washing and daily handling, carers 5% - me 95%, toileting - nurse 5%, me 95%. Is this working in my favour???????

The majority of the time so far is working fairly well, Mark is frustrated because he doesn't have a car yet so sometimes feels like a prisoner, I'm too knackered to worry about going anywhere other than getting supplies. It's not a bed of roses though, sometimes things pull us up short and slap us in the face at the enormity of the hill to climb yet. And sometimes things happen that make us feel just sad at the lack of control Mark has over his life just now ... one example ... I have mentioned a few times the problem of his legs retaining fluid through the day and that he can often go all day without passing anything, and overnight he can pee up to 3 litres. I have to check him at least twice through the night to empty his night bag so he can keep filling it up. Night before last his convene came off, on the very night I actually slept 5 hours so I'll leave it to your imagination what a mess I got up to. The mess is one thing, the emotional roller coaster we go through is quite another.

Got a letter this morning from the hospital for his 6 week check up. On it is a telephone number to ring if it needs to be changed or cancelled, under the number is the following message ... 'calls are charged at 5p per minute from land lines'. Where will it end!!

Mark exercising - who would have believed it

The pic below is not our new computer friend, it's Mark instrument of torture. It's new technology and we're thankful we know the man who owns the company who is importing them into the UK. It operates by electrical stimulation. So Mark gets wired up by sticking pads on his upper leg muscles, front and back and on his gluts (bum). Then I strap his chair as close as possible and strap his feet onto the foot plates, plug him in and off he goes (will take a piccy of him doing it when I get him some shorts, right now he's working out in his boxers and that's not a site for public consumption lol).

He's on it for approximately 20 mins now and should be working up to an hour as time goes on. What's it for .... reversing muscle atrophy, improving general circulation, increasing the range of passive movement in legs and supposedly reducing muscle spasms and in Marks case hopefully reduce the swelling in his legs and preventing the build up of fluid once they've gone down. It's a very clever piece of kit, all its workout progammes are online, once your programme has been set, you log in and it takes you through it. The programme was altered by Stuart (friendly importer) online last night to increase Marks time, so we'll see how he gets on today. After using it for 4 days it has already reduced the swelling in his legs and started to calm his spasms down.

We're not sure how long we'll have it, depends on when it gets sold to the next person with enough pennies to buy it - it's ONLY about £15,000 - but with insurance payouts as big as they are now, the disabled market is a big spender.

We're coming to the end of our first week with our Care Package assessment process. An NHS team come in for 4 - 6 weeks to stabilise a care package then they pass it to a private agency. When it goes to the agency we have to start paying towards it, so now we're beginning to assess just how good -or not - we think it is, and I have to say I'm not very impressed. Seems its a matter of how quick can we get in and back out and what's the minimum we can do while we're here. It will be a week tomorrow since he came home and so far they haven't even washed his hair, or asked if he wants to clean his teeth. So last night I washed his hair myself. We have a gap of what they think their remit is and what we think is reasonable, so over this next week hopefully we will close that gap because at the moment what we will get for our money is b****r all!!

P.S. you'll be pleased to know he can clean his teeth and they haven't all fallen out - but they don't know that!!

What do the Consultants know??

Well he's home, we've had two mornings with our District Nurse and Carers and so far so good. We have to start our mornings at 7.30 so getting up and having to get Mark up at that time of the morning is tough going. Hopefully MY body will eventually get used to such torture.

The morning Mark was supposed to come home we still hadn't been told he was definitely going and he was still waiting for a final visit from the Consultant with their views of the MRI. Their verdict is that they are confident that nothing has changed with the fixings, which is good, but they can't tell why he has the clunking in his upper back when he moves. Their best guess is that the vertebrae above and below the fixing needs to move more to compensate for the fact that it connected to an immovable vertebrae when he moves and that movement can be sudden therefore causing the clunking feeling. Basically they don't know and are not prepared to do anything further to find out!!

The swelling in his legs is just the same and they're not prepared to do anything further about that either. We just have to hope that the Community Nurses will be able to help and from our dealings with them so far we've got more chance that they will try harder. The down side of Community Care is the constant form filling and risk assessments. Everyone has to cover their backs for everything they do.

Tomorrow - Mark and his exercise machine.....

Supposedly the eve of discharge

It's Tuesday evening, the eve of Mark supposedly coming home, however they still can't agree between them what the results of the MRI are. None of the Consultants are talking to each other or to Marks doctor. In addition to that, they were supposed to get some blow up splints for his legs to help with the constant swelling and we were told yesterday they don't have any now!! AAAAARGH. It's not just the problem of his legs swelling, it's more the fact that there's no fluid going through his kidneys or bladder all day and that surely can't be good for anyone. How can they contemplate sending someone home in such a state.

We get the feeling they're just trying to get rid of him and are trying to tell him all these things may change when he gets home - well they might not as well. Am ready to go in there and chain us both to his bed until they agree to try harder. I thought part of the Hippocratic Oath was 'first, do no harm'. It seems that comes second to the cost of keeping someone in until they get them medically stable. Am feeling like I'm becoming an hysterical female and if they're not careful I'll loose it and that won't be a pretty sight.

Home visit and another first

Home visit was successful in that I returned him in one piece still alive and kicking after two days. I feel that was a good start. From his point of view he sulked a little cos he doesn't have a car yet so can't just get up and go when he wants to. Other than that it was good to be home, with home cooking and friends around and not trailing back and forth to the hospital. A little glimpse into what the first few weeks at home will look like. We were both impressed with the District Nurses and the Carers, all were really nice, efficient and it worked much better than we thought it would. All medical supplies have been delivered ready for him coming home next week - maybe - more later about that.

The day Mark came home they moved a little old man into his space and he was still there when we got back two nights later. Mark wasn't amused. He had to wait until someone in another room left and that room to be cleaned, then the old man moved to the other room before Mark could go to bed, think it was about 9.30 by this time. I had abandoned him about 8.30 thinking it could be long job before he went to bed.

Another first: everyone says you will fall out of your wheelchair at least once before you go home, however Mark was beginning to believe it wouldn't happen to him because it had got so close to coming home and he hadn't fallen out. Ooops, feeling smug a little too soon!! He was in the shower chair over the toilet, bending over doing his ablutions ....... next thing on the floor!! It happened so quick he doesn't know quite how it happened. One of the other inmates rang the emergency buzzer and within seconds he had nurses coming from all directions. Luckily no real damage done, a few scuffs on his knees but on the whole very lucky considering he fell out onto a tiled floor.

Coming home: was due to be next Wednesday, depending on what they find from the MRI which he had Friday afternoon. The area in his back where they think the problem may be is the area where the nerves are that provide sensory and motor control to the upper chest. The spasms (basically cramp) in his chest - they think could be caused by the nerves being pinched or trapped or something has gone wrong with the surgery because despite the increase in his cocktail of drugs this is slowly getting worse. Worse case scenario he may need surgery again - they haven't given us an alternative best case, we'll have to wait for the results.