March 2009

Hi everybody, one good thing, Dennis has been issued with a computer by the hospital as Colin, in particular, is working with the Occupational Therapy (OT) Unit to engage Dennis more interactively. They have a new ‘head touch control’ system which Stephen Hawkins uses, so whilst Dennis is lying in bed and with different programmes, he should be able to do amazing things. Colin seems to be ‘teaching’ the OT department how to use these to the patient’s best advantage! Its early days on the systems implementation and Dennis will probably get really frustrated trying to use it but it is a step to more independence. So, when Dennis is watching TV or snoozing, I, hopeful, can do a bit of work onto a memory stick, so here goes with a belated entry to the blog.

People often ask me for Dennis’s address, so here it is again:

St Andrew’s Ward
Stoke Mandeville Hospital
Mandeville Road
Aylesbury
Buckinghamshire
HP21 8AL


The month started with me having negotiated going back to work on staggered days to enable me to still spend four or five days a week with Dennis. Colin was kindly supporting us so I knew someone was with Dennis while I was away. I found it really hard to take on the ‘caring role’ with other people’s loved ones when all the time I felt I should be caring for my husband. However, I just started back when the hospital placed Dennis on an ‘Independent Living Course’ on the days I had arranged to be at work; I was able to cover this with annual leave. The four half day courses were really informative although Dennis did not hear much of it as being able to maintain a blood pressure whilst up seemed to be getting increasingly difficult for him.
Then the snow came. Travelling the distance was almost impossible, in case I could not get back, so more annual leave was kindly honoured.
Then came a series of tests by a cardiologist to address the problems with Dennis’s BP. 24hr ECG, 24hr heart monitoring and 3 day ECG took place resulting in a new medication being prescribed to retain fluid and salt within the heart - yes more!
Despite such slow progress, Dennis is much more positive in is attitude. He pushes himself with the challenge of getting up which often leaves him feeling awful. One day he returned from his physiotherapy session in the gym with a BP of 66/33, he was on the verge of passing out.
As I said before, Dennis has lost around 7 stone in weight. We seem to be going round in circles. While Dennis feels so awful in himself he is weak and unable to push himself forward. He still has a poor appetite and without exerting himself is not hungry. He also does not drink as much as he should, even with me encouraging him all the time I am there. Any intravenous drips are usually placed in Dennis’s feet. However due to lack of fluids his veins are collapsing. Dennis has been having overnight fluids to keep up his hydration but still he is not getting enough. I have been saying the next thing you will be telling me is he has a urine infection. They have been unable to get a line into any part of his body for three days, due to dehydration and sure enough he gets a urine infection (UTI). Dennis starts being treated with some anti-fungal medication.
It was then found that the infection had spread to his lungs and intravenous antibiotics were required. This resulted in Dennis requiring a Hickman Line, which is how cancer patients receive their chemotherapy. This necessitated in him going to theatre to have the line inserted to an artery in his chest. Fraught times. I do wish there was a little more ‘prevention rather than cure’ ethics on the ward.
He was then given one antibiotic for the bladder infection every eight hours, which took an hour to transfuse and another for the lung infection twice a day, which took ½ hour to transfuse with fluids in between so he seemed to be constantly connected and disconnected to something with alarms going off in between to alert nurses to start & finish times. Dennis did not get much rest during this period. Luckily Dennis did not have a reaction to either of the antibiotics prescribed, but they lasted for 10 days.
Poor Dennis, every step forward seems to result in two steps back; I really wish things were progressing better. Everybody tells us ‘he will make it’ but it’s really hard to remain positive sometimes when you see other people come and go to rehab from the ward and we are still here in the acute area.

I had asked Dennis’s Consultant during a ward round, when he had last examined Dennis’s spine. His reply, to my amazement was, ‘Why do I need to examine him, I only need to look at the scan’s!’ Dennis is still in agonising pain whenever he is turned or moved. His neck and shoulders are really painful and the weight and muscle loss add to his discomfort. The spinal repair scar is tight and his thoracic fracture, where he was run over, is, as I put it to the Consultant, ‘very lumpy bumpy.’ Although he didn’t actually examine Dennis, he did arrange for some more scans. I explained to him that I felt while Dennis was in such pain with every movement, this was stopping him moving forward. Unfortunately, it also means that while he is weak and under nourished, he is not strong enough for any possible corrective surgery. It appears from the scans that the area between the spinal repair may have collapsed forward casing the bones to rub, rather than glide over each other. Nothing will be done at the moment; here we go, around in circles again.

We have experienced some ‘care’ issues with the staff and although we try and resolve these at the time, with the constant staff changes, there are 40 on this unit, I find I am constantly reiterating Dennis’s needs and choices which we find very frustrating when most of them are ‘common sense’ which I understand is not a word you are supposed to use any more! Although I have had several discussions with the Ward Sister it got to the point where I felt I was knocking my head against the wall and after discussions with the Patient Liaison Officer and the family Councillor it was decided we would have a joint meeting to try and resolve these. In some ways things have improved, after a bit of additional hostility from some of the main culprits. Good as the staff are, some I feel have lost their empathy for the patients situation and behave as ‘robots’ with their care. I have asked some ‘How they would feel in this situation’ and their reply is usually ‘I try not to think about it!’ When I give care to our service users at work, I always provide it as to how I would like to be treated or that of my loved one. I really feel this is the only way to provide personal care without the added trauma, or the realty, of being paralysed.
Dennis still does not communicate very well, as I’ve said before, he has had several swallowing tests to ascertain why but I feel it is mainly due to the tracheotomy but they are still reluctant to remove this while his chest is still prone to infection, which should improve when he is up more, but once again, this is a problem due to the BP and infections! Do ‘circles’ come to mind?!
I’m sure I have mentioned before, that Dennis is long in the body and too long for the hospital beds when the head section is raised, causing back pain as he is being bent in the lower back, rather than the waist. Although this is supposed to be addressed by the staff since last October, we are still waiting for something to happen and Dennis’s head is getting quite a bump on it from its meeting with the bed head! One day I was waiting by the medication room and notice one of the larger gentlemen was sitting up right in bed. I also noticed the bed sides were different. I asked him if he would mind me measuring the top section, this, it turns out is 3” longer. When I mentioned it to the staff I was told ‘Oh that’s an old type bed,’ I didn’t realise it was longer but I can see that now, we will see if we can get Dennis one!’ A few days later one arrived and Dennis can now sit up comfortably in bed.

The level of Denis’s injury allows Dennis to have movement in his biceps but not his triceps which means he can move is arms in an upward movement but can’t automatically move them down. This results in them resting on his chest, becoming tight at the elbow and locking in place. It is then painful for him to relax them down. He has been given various splints to help keep his arms straight. Although he was previously left handed, his right now appears to be stronger and it is hoped its range will be maintained to enable him to control an electric wheelchair.
Dennis and I were engaged 34 years ago on Valentine’s Day. Normally I would have two red roses, a nice card and be wined & dinned. This year we still celebrated but Dennis was in bed on his own. I often want to just jump in with him and give him a big cuddle.
Although Colin is often up to see us, Aneta & Charlie came for a long weekend too. Hospitals are no place for a 2 ½ yr old but it does us both good to see them both.
Another double dose of antibiotics take its toll on anybodies appetite and although Dennis will eat it is not enough to sustain anybody. We agree that Dennis was overweight but as we have been told, this extra ‘padding’ protected Dennis’s internal organs during the accident but have since been concerned by the dramatic weight loss. The options were to have a feed tube through the nose or directly into the stomach. I really did not want to do this as I wanting to be moving forward, not back however we felt Dennis was getting weaker by the day and some nutritional intervention had to take place. It was agreed fortified feed would be provided through a nasal tube. This is uncomfortable to insert but unfortunately necessary. In one week Dennis put on 3lbs so we hope within a month this will make a difference.
Dennis had new varifocal glasses just before the accident, but lying in bed, the best area for viewing the TV, is the small area at the bottom. Each bed in the acute ward has an overhead TV so this can be angled whether the patients is flat on their back or sitting up in bed. However, we have been asking if Dennis could have his eyes checked. Although a Hospital with an eye clinic we were told there is no one to do a test and anybody that needs one has to go into Aylesbury – crazy! However, again I was the one that had to find an optician that would come and visit Dennis. This he did, and although he wasn’t given an eye test, he has been made a pair of glasses the same as the bottom of his varifocals so he can see the television through the whole of the lens.

Sony BMG has been very kind to Helen with time off and support at work. Helen’s colleagues and the company were very generous with sponsorship when money was raised through the sponsored swim. She was also given two tickets to the X Factor Tour which features the 12 finalists, along with several other CD’s and DVD’s of X Factor and Britain’s Got Talent finalists. This was an inclusive raffle which, unfortunately was not promoted as much as we would have hoped, amongst the relatives, as most of the patients don’t have any money on them! but still raised nearly £350 for the spinal unit, very much appreciated.
I will write another Blog entry for March, which I hope will not be so long in coming. There has been quite a lot going on, hence the delay on the entry, not so much with Dennis, but our life in general. I continue to negotiate funding and plans for the extension to accommodate Dennis’s needs, but more about that next month.

Dennis and I have had a nice day today (Sunday). He got up for us to have lunch together in the restaurant, although he didn’t eat much and then we found a quite office area and came across the Prayer Room. Here we read some words of comfort and chatted about people close to us, especially some that are unfortunately no longer around and how they would have supported us in our current situation. A few tears were shed.
When we got back to the ward I read Dennis the new messages left on the blog, more emotional moments and also re-read him some of the cards you have sent. As I’ve said before, these mean so much to Dennis. Your new messages are brilliant, they bring scenarios from normal everyday life to his hospital bed, it is lovely to see his face light up as I read them to him. Dennis, I felt, was beginning to doubt is place in society. Messages like this do so much to raise his moral and make him feel that he can be part of everyday life again, - please keep them coming.
After we had had these poignant moments he turned to me and said Thank You’. He was so sweet (a few more tears.) I told him that was nice but he didn’t have to thank me, I was here because I love him xx