Spinal Unit BBQ

Once a year SURF (Spinal Unit Rehab Fund) organise a BBQ in the garden of a local pub. Burgers, roast port and lovely crackling, chicken wings, roast and jacket potatoes, nice breads and lots of puds all wahed down with Tetleys for Mark and a Gin and Tonic for me. Inmates, ex inmates, Nurses, OT's and Physios all had a good time. Unfortunately I forgot my camera so no piccies, will try and remember it for tomorrows outing. We're off to Richmond to visit friends.

Today we've been on a 'housing' course run by SIA. Basically another day of understanding how National and Local Government make it as hard as possible to get anything that you're basically entitled to. It's great living here!!!

Some better news - Marks syrinx. We've found out that if it starts causing loss of feeling or motor functions and he has to have it drained then the feeling and motor will return to the level before it started giving problems. So that's one thing he's a little less worried about. He has also been talking to an ex patient and found out he suffered a lot of pain while in rehab, caused by muscles healing and working hard in the gym, but eventually it did come right and his body settled down. They're going to try and get him some Acupuncture which I think will help a lot. He's keeping his spirits up researching his next car, then boring me with the details of every one he's considering. You'll all be pleased to know he hasn't changed at all in this way :-)

It's a waiting game

The doctors have decided that they are not going to do anything about Mark's syrinx for now. We're not sure if that's good or bad. It's good in that they don't think he needs an immediate operation to drain it (which can be a dangerous operation), it's not so good in that Mark has to live with the uncertainty that any time he might loose some of the feeling and movement he has before they do anything about it. In the meantime he's still suffering a lot of pain. It's not conducive to looking forward to getting on with life.

It's not all bad though, in the OT department Mark is taking apart an engine - you just can't keep him away from them!!! He had better be there long enough to put it back together again or they'll have pieces lying around until the next engine buff comes along. That exercise is also good and bad. It's good because he's enjoying it and enjoying educating anyone willing to listen about how it works (not many), it's not so good because he's realising that he may never get enough strength back in his hands to do that kind of work again.

He's done another car transfer, a bit easier than the last time but still not good enough to be able to do it on his own. Another frustration is that he's coming to realise that his main goal from rehab will not be realised. He wanted to drive away in his own car. A bit of a big ask in that time but that's what was keeping him going. Yesterday we had a visit from our good friends Sanny and Les and Mark had them pushing him around the car park looking at cars with 2 doors because they'll be easier for him to get into. I can see our meagre bank balance taking a serious hit any time soon.

To end this on a high note, he's started showering himself and that's a brilliant step forward in his rehab, for most of you it's probably hard to get your head around the fact that they don't shower the inmates more often, the reason - not enough staff!!

Tonight is Spinal Unit BBQ, so hope to have some piccies to put up tomorrow.

Sunday: Although we are again facing an uncertain outcome to Marks condition, we are continuing with trying to put some normality into our lives and on Sunday we spent the afternoon with friends John and Janet, Dave and Chris having a BBQ. The weather was lovely, the food was brilliant and the company was fantastic - thanks guys, it means a lot to be able to do the occasional thing to make us feel 'normal' again.

Monday: Mark had a visit from his Doctor who informed him that the Consultant, Neurologist and himself were having a Pow Wow about his condition. They're taking the situation seriously and he'll get to know tomorrow what they intend to do about his syrinx. He continues to suffer considerable pain in his neck and the spasms have returned although not in quite the severity, even though all his drugs have been increased. We can only wait to see if the syrinx shows any sign of worsening his condition.

MRI Results

The Bad News and the not so Bad

The MRI show up two things, first the bad news, there is a definite gap in spinal cord. They're not absolutely sure when it occurred, probably due to the swelling around the area of the injury - C7 - following the accident and surgery, putting pressure on the cord. If we hadn't already accepted the fact that Mark would not walk again we would have to accept it on that evidence.

The 'not so bad' as the Consultant put it - although to Mark and I this seems like the 'bad news'. He has a Sryinx. A Sryinx is a pocket of fluid within the spinal cord and is another possible cause of the gap in the cord. If it extends downwards, it's probably not a problem because there's not feeling or motor there anyway. If it extends upwards, it will start to affect what feeling and motor functions he currently has. What do they do about it???????? At the moment nothing. It's possible it will stay where it is and not create any problems. The first Mark will know of it moving upwards is he will start to loose sensation, become weaker in areas he currently has movement and it will get painful. At that point they could operate and insert a 'shunt' which would drain the fluid from the cord to his abdomen. It's a dangerous operation but a permanent fixture. It's a ticking bomb, could tick forever and never go off, could go off at any time. As you can imagine he's not happy about it, it's scary.

We have, however continued on with things and yesterday we went out for a quick dinner and movie. When I say quick, nothing is done quickly now, it took me an hour and a half in the morning trying to find out where disabled spaces are in the cinema and as most of the cinemas are automated when it comes to phone systems it wasn't an easy task. Can recommend the Odeon, they're the only cinema that actually answers the phone.

The Mutiny. Last week Mark practised transferring onto his shower chair and moving around their bathroom to see if he could manage toileting and showering. Seems he can and his Physio decided to speak to the nursing staff and build showering into Marks morning routine - if you've just worked out that he's been there 3 months now and not had showers you'd be right - anyway the nurse he spoke to gave a gasp of alarm and said they don't have time in the mornings for showering patients!!! Mark lost his rag then and reminded them that this was supposed to be his rehabilitation time and he wasn't getting rehabilitated because of the lack of staff. Which it does come down too. All the staff work really hard, there just isn't enough of them. The other day there were two nurses on duty for 15 patients - if there was a fire they would all be crispy crittered!! Anyway he complained to the Ward Sister who tried to defend the situation by saying she could get Bank Staff in when they really needed to and Mark said 'well why don't you then'. No answer. He's going to write to the next level up, it really is disgraceful. I left him with a can of Jack Daniels and Coke last night - his personal mutiny, there's not supposed to be any alcohol on the ward (he has checked that it won't cause a problem with the drugs he' taking in case you think I'm trying to kill him off).

Cocktails and Cars

Marks been on his new cocktail of drugs .....

- Pregabalin - used to relieve neuropathic pain from damaged nerves by decreasing the number of pain signals that are sent out by the damaged nerves.

- Baclofen - acts on the spinal cord nerves and decreases the number and severity of muscle spasms caused by spinal cord injuries, also relieves pain and improves muscle movement.

- Diazapam - acts as a natural nerve calming agent, helps to keep nerve activity in the brain in balance and helps relax muscles.

..... for 3 days now and they've made an amazing difference, apparently taking all 3 together gives a better combined result than any taken independently. They certainly seemed to be working, his spasms have calmed right down, his pain is pretty much under control and he's eating again. He's almost back to his old self, brighter, talkative and currently planning a mutiny within the Spinal Unit - more about that in the next few days.

He's still waiting for his MRI but that could take up to 2 weeks!! They're convinced there's something underlying that they're not understanding yet but at least they're working on it.

He's back to his normal periods of OT and Physio and yesterday he did another car transfer. His Physio suggested he might be better with a 2 door car with wider doors to give him a bit more room to manoeuvre that big body but Mark likes his car and doesn't really want to consider anything else for a while. Men and cars!!!! My only consideration if I wanted to drive is how easily can I get in so I can get from A to B and get on with what I was going for, not what I'm arriving in. But guys don't think like that do they. Anyway he got in with very little help, better than he did last time, we went for a little drive around the hospital grounds and he got out with less help than last time - so all in all a success. Good for his mental health. He's still got one foot bandaged with his little pressure sore but the other is back in his shoe.

We're moving forward again.

Result!!!!!!

Today the Consultant prescribed a new cocktail of drugs to control the spasms, relax the muscles and manage the pain. Mark is also booked in for an MRI to try and find out what's causing all the pain. Not only were they prescribed today but they were delivered and administered today. Do you think we have finally got through ...............

First trip out

Despite all the pain Mark is in we had a trip out for tea. The time it took just to get ready, Mark into Barbara Bus and tied down to his satisfaction before we could even turn on ignition was 45 mins. We won't be going anywhere in a hurry from now on!

First trip out was just along the M62 to X-cape the local indoor ski slope with lots of eateries. We did toy with the idea of launching him down the ski slope but he didn't see the funny side of that. First meal out was at Chiquito' a Mexican and pleasingly they served draught Tetleys so he could have something decent for first alcoholic drink. Food was average as normal for most of these places even though it cost as much as it would to feed me for a week, it was a change for Mark and the opportunity to get used to being out with the humans!

Travelling in the back of the Barbara Bus has made Mark even more determined to perfect his car transfers, he hated it, but realised if it was the only way to go out it has to be done for now, but not good for his emotional well being and added to his pain.

Today Mark and Mike are going to 'chely' tune his wheelchair, it's time for some radical changes to get him sitting comfortably and improve his posture. It could be a nail biting afternoon!

Frustration and pain

Monday Mark has his left foot bandaged, he's got the beginnings of a pressure sore on his ankle. This is caused by his constant spasms moving his feet around in bed.

Tuesday, despite all his pain he was determined to try his first car transfer - it wasn't pretty but he did manage to get back into his chair with the help of Dean his Physio. Dean did say in the past he has had to summon reinforcements to get people back out of their cars so Mark didn't do too bad.

Wednesday, I have only spoken to Mark on the phone but he tells me his right foot is now bandaged due to the beginnings of a pressure sore - same as his left foot. He hasn't gone to Physio because he's in too much pain with his back. The doctor is giving him a stronger pain killer with muscle relaxant tonight which will hopefully alleviate the pain. His x-rays have come back ok, they're happy there's nothing wrong there.

I have spent the day on a Continuing Health Care course, which basically spells out just how hard the government will work to give Mark as little care and benefits as they possibly can and just how hard you have to play the game to get what you need. At least I can come home and have a large glass of wine, poor Mark however is in bed in pain and feeling really pissed off!!

Communication is king

Although Mark is in constant pain at the moment he's doing his best to keep up with his OT and Physio. They did take pity on him in Physio and took a while to massage his shoulders and back which gave him some relief from the pain. We were also waiting all afternoon for him to go for his x-ray, by bed time they still hadn't been so we thought it wasn't happening. Remember NO communication is standard! Anyway he got into bed, we got him nearly undressed and ready for bed and they turned up to take him for his x-ray - aaargh. Get dressed, back into chair, wheel around for x-ray - 45 minutes later transfer from chair back to bed and get ready for bed again. Results hopefully today......

Pain pain and more pain

Although Marks infection is getting better, his body is still going into spasm a lot. His neck and shoulders feel like he's digging the garden constantly (I did point out I wasn't sure if he would know what that was like as he NEVER dug the garden when we had one), so he's in a never ending loop of pain. He was only up for just over 3 hours today and although he's trying to be cheerful eventually it grinds him down and he goes back to bed. The pain killers he's on just aren't getting it under control so he's going to speak to the Doctor tomorrow and see what they can do. It's affecting everything he's trying to do and hindering the amount of work he can do in the gym.

Case Conference and back to the Gym

Yesterday we had our first Case Conference. This is where they get everyone from each department of Mark's rehab together to discuss how he's doing, what they should be concentrating on over the coming weeks then set a discharge date. At the end of the discussions his Consultant wanted to set a discharge date of 6 weeks (from yesterday) but everyone else ie Occupational Therapy, Physio and Nursing all disagreed and wanted it to be 8 weeks. Mainly because he has been ill and it has put him back about 3 weeks in his rehab. So we have a provisional discharge date of August 30th. Mark was reasonable happy with this, he knows he has some catching up to do from being ill and although he will be on antibiotics for another week and a half he's started back in the Gym today. He's having to build up chair time again, he got to where he was doing about 8 or 9 hours, but he's back to 6 or 7 before he needs to go back to bed. But he is on the mend and moving forward so we're really pleased with that.

Mike and I are registered to use Barbara Bus now. It's a people carrier donated to the hospital from the 'Barbara Foundation' and it's equipped for a wheelchair in the back and is for anyone on the Spinal Ward to use to go out whenever they want. We've booked it for an outing next Friday, we think Mark should be up to being terrified by me driving him around by then!!

The mend will take some time

Although Mark got up for about 3 1/2 hours yesterday and enjoyed a bit of sunshine after tea, he still has a long stretch to get properly better. His poor body was in spasm on and off all night last night so he's completed knackered today but determined to get up for a while and go to Physio. It's going to be a long haul to get back to where he was before he was poorly and that's extremely frustrating for him.

On the mend

Slowly, Mark is on the mend. Temperature normal, blood pressure good, heart rate good, swelling going down. Canula removed from his hand so the remaining antibiotics will be given orally. Today we had a bit of outside time in the evening sun. He's very weak again, it's amazing the ground he's lost being poorly over this last week. He's not able to transfer at the moment so it's back to the hoist to get in and out of bed. He'll have to start building up his chair time again, today he was only in it about 3 hours. Tomorrow maybe he'll do a bit longer.