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Get Well Dennis!
I will write an update for this month and go back to the others, when hopefully ‘things to organise’ will have slowed down a bit!
June started with me coming to the conclusion that Dennis needs to get out of here and see that there is a life out there. As we had been given a discharge date of 12th August for my work and extension etc, it was decided to aim for this and all hurdles to cross to get to ‘D Day’ swung into gear.
Dennis and I attended the Independent Living course which I attended last February. Dennis was on top form. I was so pleased he interacted so well and appeared to enjoy the stimulation, especially the session that covered the legal aspects of funding care packages. It went over some people’s heads, but Dennis drew on his legal experience and as one patient attending the course said, he seemed to glow from the involvement. This young lady is only 21, married for two years, woke up one morning with an infection and is now paralysed with no movement from the neck down. She is Asian, so wise and accepting and has such a calm inner beauty you feel refreshed just by talking to her, Dennis has great admiration for her. We have learnt in here that spinal injuries have been caused in a variety of ways and can happen to anybody at any time. The course covered all aspects of returning home to an independent life with a PA (personal assistant.) One of the girl’s that came to talk about her experiences was a young (well endowered) Russian, Dennis caught my eye and said ‘Can I have one of those?’ It is going to be different having someone else living in our home under these circumstances but, if we pick the right girls; I am sure it will empower Dennis.
Following on from this course and our preparations to return home, Dennis has been assessed by three prospective agencies. Their costing will be prepared and although we are told we will have a choice, which will probably be the cheapest; Dennis’s care package will be provided by one of these.
Dennis has also been assessed for continuing Health Care funding and we found out last week that this has been agreed. Although this is good it does appear to bring some limitations and restrictions. Medical, Physio and Occupational reports have been compiled to submit with this application and we were surprised to read that Dennis’s level of injury is higher than we had been led to believe for the last 11 months. Dennis has been requesting a meeting with the Consultant for months to discuss his injury, recuperation and rehabilitation but this never seems to materialise, I think he is definitely entitled to this.
Helen came to visit us one day over the weekend and Colin, Aneta and Charlie came the next. I had asked Colin to come up in a Taxi to see if, now Dennis was trialling a new manual wheelchair, this might fit in the back of the Taxi. The problem is, Dennis is long in the body which makes his head height a problem when accessing vehicles. We managed to get him in, although only sideways which is not recommended. However, we risked it (the OT would have had a fit) and went about a mile down the road to the local pub! It was a beautiful day and Dennis was in his element with a glass of Fosters and burger & chips (he ate the lot) under an umbrella in the garden with Charlie running around him, hopefully there will be plenty more of this.
Dogs for the Disabled had been invited to the hospital to promote their service. Two golden Labradors came with their owners, who it appeared to us, needed minimum assistance from them. They were far more able than Dennis and it was felt he would be an unsuitable applicant as their ‘owner’ ideally needs to be living on their own and the one that feds them and takes them for walks, otherwise it is difficult for the dog to relate to one person. When we get home and settled we would like to get another dog, probably a poodle, as we were so lucky with our last ones.
The hot weather was upon us which causes havoc with the skin when lying on a plastic mattress! This meant Dennis was confined to bed for a few days as once the skin breaks down it can develop into a pressure sore very quickly which can result in months in bed for it to heal and we don’t want that.
As you will have seen, Dennis’s niece Claire (his sister’s Mary-Rose’s daughter) had undertaken the Three Peaks challenge with a group of workmates. This they achieved in 25.5 hours, remarkable and definitely worth a few of your pounds! This is being collected by Aspire, a spinal injuries charity, and held for Dennis’s use.
We had at last arranged for a one-to-one with Dennis’s Consultant. He didn’t tell us much that we hadn’t already gleamed from others but it was nice to hear the words from him. There is still a bit of confusion as to the level of Dennis’s injury, however no two people are the same, age, determination and environment has a lot to do with individual’s abilities. I am sure, when Dennis gets home and with the assistance of his family and friends and an experienced PA he will improve dramatically. It was good to hear from the Consultant that he is happy for Dennis to return to the unit for periods of intense rehab as and when this is felt beneficial.
We had been looking round for an interim placement for Dennis. Unfortunately the two that the PCT had suggested we visit both felt unsuitable to us. I appreciate there is a need for highly dependant individuals who have brain injuries, need ventilating and have challenging behaviour but this environment would be of no benefit to Dennis, even for a relatively short period of time. Constantly being assessed by officials and hearing how dependent he had now become for assistance in everyday tasks has been very demoralising for him. He keeps saying to me how useless he feels and understandably so, seems to have reservations as to how his life will be when he returns home. Of course it will be hard to come to terms with situations but I am sure he will blossom in a home environment.
One of the residential establishments we did like was a very ‘up market’ home in Weybridge. However, although they had initially agreed that they could address Dennis’s needs, on the day they were coming to do their assessment, they backed out saying they felt they did not have the staffing levels to safely manage his needs which was very disappointing but I am glad they addressed this rather than place Dennis in an unsafe environment. It is not that Dennis needs a high level of nursing care, more that he needs someone with him.
So the hunt continued and I had a re-think. I came to the conclusion that if the extension had been completed, Dennis would be discharged home with his ‘PA’ in place, so it seemed that if I could find accommodation, we could start the care provision which would be middle ground to returning home, and help us identify his needs while so we could still incorporate these into the build. I started researching the possibilities of a local rent, which unfortunately appears can only be for a minimum of six month and then found that this could be covered by housing benefit as Dennis is theoretically, homeless. I will take this suggestion to our discharge planning meeting next month.
As we are looking for a suitable electric wheelchair for Dennis’s discharge there are some that stand. I feel this would be good for Dennis so he will be able to ‘look in the bonnet of a cab.’ I think he will find it really frustrating not to be able to. Of course these things come at a price, about £22,000 worth, as much as a car! We may be able to get some help towards it from the Government scheme ‘Access to Work’ and the money held by Aspire from the ‘Channel Swim’ which by the way is being held again this year!
Dennis is also having assessments for a ‘shower chair.’ He used to be in the shower about twice a day before the accident and here they usually use a ‘shower trolley’ which he does not like. He trialled one of these one weekend and another the next. The one that looked the most efficient was not so it’s definitely a case of ‘try before you buy!’
I will email this to Colin to add to the Blog and hopefully have another update soon. PLEASE keep those messages to Dennis coming, he needs to know you are out there for him, especially now his return home is in sight. Several people tell me they access the site so let him know you are thinking of him and leave a message, not much to ask I think when he has come through so much. We look forward to reading your messages, love to all xx
I’m sure those of you who check the blog and the few that leave messages, except for Cousin Carol who is an absolute star in all aspects of messages, cards and support, are waiting for the update – I am doing it! I attach below are the events from March, April and May will follow shortly.
*****A quick news bulletin*****
Dennis’s niece Claire, and her colleagues from work, have decided to climb the ‘Three Peaks’ next weekend 20th - 21st June to raise money, through Aspire, the spinal injury charity, for Dennis. We are so touched by people’s kindness and support and would ask you to visit this page and donate to this group of young peoples endeavors in this challenge. Thank you all so much.
If you all could see the pleasure on Dennis’s face when I read him your blog messages, or his cards, I am sure you would all send him cards every day! He gets so touched by your words of support and encouragement it is better than any medicine that could be administered (and without all the rotten side effects, only good ones!) Please keep them coming.
I will try and summaries the events of the last three months. I want to keep this record as a sort of ‘diary’ for Dennis so he can see exactly what he has been through. Apologies again for the late posting. I think time is taking its toll on me and my energy is dwindling.
March 2009 – As I explained last month, Dennis’s health had deteriorated and it became necessary for him to have a Hickman Line inserted into his chest in theatre to take the necessary drugs which unfortunately, due to the lack of ‘flushing’ became blocked. Any ‘foreign object’ in the body is an opening for infection and after a week, an oncologist came with some special medication to try and unblock it. Unfortunately it did not work, so it was removed. Dennis also had a nasal gastric feed tube for fluid and feed due to his dehydration and loss of weight. Unfortunately, although I could always get Dennis to take his pills, when not there staff would crush the pills and administer them through the tube, Some medication has quite a resilient coating on it and this does not crush very well, hence the tube would block. I don’t know if any of you have ever had one of these inserted, but it’s not very pleasant, especially when a replacement could have been avoided. Dennis’s weight gain still fluctuated on the overnight feed and with us encouraging him to eat during the day. His weight is currently 10.5. The dietician is looking for him to be between 11 and 12 stone.
Dennis has just been given his forth physiologist, this time a man. None of the others seem to make any progress. Why would anybody open up their feeling to someone that keeps changing and you have to go over the same ground? Especially Dennis who likes something to be actioned first time he says it! Also, Dennis wanted me to sit in on a couple of sessions, often to interpret something he is saying as it is not always that easy to understand him, and Dennis just seems to be opening up his feelings and they move onto another subject, they don’t seem to grasp when he is just starting to unload his feelings, Oh well, hopefully one of them will get to grips with the situation and the way we are going it will probably be Dennis first. I have regular ‘chats’ with the Family Councillor, it is good to ‘unload’ as what is the point in falling apart, yes, of course I feel down at times but where is that going to get us? I have to keep going to get Dennis home, as I say ‘If Dennis is OK, then I am OK’.
To enable us to build the necessary extension on our home, I have had to find additional money. This is easier said than done in this economic climate but hopefully there will be some secured Charity funding available soon.
The hospital is undergoing some development work and part of the outbuildings for the physiotherapy department are being demolished to make way for residential properties. In aid of Red Nose Day, the physiotherapists dressed up and pushed an engineless car from one end of the hospital into a central open area. This is how patients learn the art of transferring from a wheelchair into a car seat. I’m not sure how much they raised but it was a fun day (unfortunately hospital patients never have much money on them!)
Again Dennis’s NG tube blocked (through medication – very annoying) and he also got another chest infection. It is so frustrating when we keep going round in circles and never seem to be able to get out of the loop. We also found out that four patients on the ward had contracted MRAB, another strain of MRSA and these patients needed barrier nursing. One of them had been in Dennis’s four bedded bay, no thanks, we don’t want Dennis contracting that thank you very much! In came a team of men to ‘Deep clean’ and what I found amazing was they started cleaning , rails walls, equipment etc with disinfectants with the patients still in their beds, so being covered with any germs and cleaning products. I requested Dennis was removed from the ward while it was being cleaned. Not unreasonable I don’t think but I was made to feel I was causing a right fuss.
The consultant and the respiratory technician are keen for Dennis to have the tracheotomy out but Dennis is still a little apprehensive of being able to clear all chest secretions without it. There is something called a cough assist machine that blows air into the lungs to expand them and then sucks it out! It is likely he will need one of these when he comes home (only costs eight thousand pounds, hopefully it will be funded by the health authority.) To assist with this process, Dennis has been fitted with a Silver Negus Tracheotomy which costs £600 and is hand made (the original type before plastic was invented) So now Dennis has a bit of ‘bling’
Blood pressure is still a problem with readings of 58/38, 68/48, 87/55 on three consecutive days when he is up in his wheelchair, even with the back tilted and his legs up. This drop really makes him feel drained and although the cardiologists visit once a week we do not seem to be making much headway. Dennis has been experiencing these problems since last October when he first started getting up. They are doing additional monitoring on a ‘tilt’ table that gradually rises him degrees and his BP is monitored. Yes we know it drops when he raises up but what is happening about it? Dennis also uses an electric leg bike which is good exercise for the leg muscles, circulation and the heart, I keep asking him how far he is to Brighton!
Dennis is still waiting for the Drs to explain his injury, diagnosis and prognosis. In St George’s Hospital we had daily updates and explanation. Here we have had nothing, it just seems too much both to explain the situation, but you know us, we always ask ‘what’ ‘why’ and ‘how’. Helen often says that she is sure Dennis would not be here today if we had not had the excellent care and attention he received at St George’s Tooting for which we are eternally grateful.
More to follow….!
Here I go again, yes I’m sorry, so many people are saying to me,‘I keep checking the blog but there is nothing new.’
I know you are all wondering and it must be really frustrated but I will try and get something posted soon!
Dennis’s address has changed, as of his Birthday (28th April) he moved to a rehab ward, so he’s now on St. George’s (not St. Andrew’s) more later!
St. George’s Ward
Spinal Unit Stoke Mandeville Hospital
Dennis is progressing, everything takes so much effort and he tires easily but he is a lot more positive in his attitude and just wants to come home, so amongst everything else we are desperately trying to finalise plans / funding for the extension, hence little time for ‘blog’ writing!
We know you are all thinking of us, it means a lot to us. xxxx
People often ask me for Dennis’s address, so here it is again:
St Andrew’s Ward
Stoke Mandeville Hospital
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
Writing this blog takes a lot of my time, especially when I get in at night, weary from a day at the hospital. So I’m sorry to say, the update will come, but I have some important letters to write, which cannot be put off as some will delay progression on our efforts to move forward with the adaptations to our house to enable Dennis to return home.
So please ‘share the love’ ‘show us your support’ (it is hard sometimes keeping up my moral) ‘leave your messages’ and ‘watch this space!’
Love to all xxxxx
Hi to you all.
This is a record of Dennis’s unfortunate accident.
Please excuse my grammar and phrases. As I am sure you can imagine, this is really difficult to write down, Hazel x
The medical staff have told us it is a good idea to keep a diary for the patient covering their time in hospital. They have found that a great void is left in people’s lives during the time they are in hospital, especially ICU (Intensive Care Unit) so we thought we would make a web link for you all to be updated on the up’s and down’s of Dennis’s road to recovery.
We will keep updating this whenever we can. - Please feel free to leave a comment ( click on the comments thingy near the top of the page)
For those of you who may not already know or have heard the series of events either second or third hand, it all started at 4.50 on Monday 30th June when Dennis skidded on his new motor cycle near Hackbridge Station near Mitcham. The bike went one way and unfortunately he went another, under the path of an on coming BT Transit. Here the story differs slightly that he was conscious for a while and then experienced terrible trouble breathing. An Ambulance was with him very quickly who tried to ventilate him at the scene, but due to a likely neck injury from the accident, could not throw back his head to insert an airway. Oxygen was supplied through a mask. He was rushed to St. Georges, Tooting A&E where he underwent an emergency tracheotomy which is where he was when we arrived.
Dennis had his driving licence on him which gave our home address, but as no one was at home. The Police found Colin’s Business card in his wallet and contacted him in quite an inquisitive way to identify the relationship. Colin gave them my mobile number and I was contacted whilst shopping in Asda on the A3 in Roehampton, very scary. They told me to wait there and a Police car would collect me as they needed to get us to the hospital quick. Helen was on a bus coming up Putney Hill and with sirens going we swerved our way through the tennis traffic to the hospital.
Here we waited until about 1 am in a state of shock and disbelief until we actually saw him. From the operating theatre he had a full body CT scan and when we saw him he was settled in ICU, strapped to spinal mattress with his neck in a head brace.
We stayed with him until 3 am and were advised to return home and get some rest, how? Of course we knew we needed to keep our strength up to support him. We phoned at 7.30 and they said he had had a comfortable night and returned to the hospital for 10.30 visiting. It had been difficult at the time of the accident to know who to contact as initially we knew very little. Gradually we informed more people. I asked if a representative from each of Dennis’s extensive circles of friends to be mediators to alleviate constantly repeating events and, hopefully, progress.
I want to say a big thank you to those who have taken on this role and for all your offers of help and support. We have been overwhelmed by your kindness and concern. I know everybody feels so shocked and helpless but just knowing you are there and all ‘rooting’ for Dennis means so much. As I’ve said, those little ‘pings’ of text giving encouragement and support have touched us all and reinforced the love and respect you all feel for ‘my special man.’
Tuesday 1st July - Dennis was settled in bed 4 with what seemed even more wires and machines recording and supporting his health. Although conscious he was concussed, scared and frightened. With the tracheotomy he was unable to talk and as we all know, Dennis loves to talk! He could mouth to us his thought and fears. He asked “Where am I” and we had been told to recite the basic details of events. Dennis’s initial reaction was “Oh bugger” which is not a phrase I have ever heard him say before. His face tensed in terror along with the mouthed words, “Where am I” and “I can’t breath.” We explained and reassured telling him he was not breathing as normal but through the tube in his neck and that we could see the monitors that were showing he was doing well and that through the help of the machines, everything was fine. He was not convinced. At times he was very agitated, throwing his arms around. The Doctors, nursing staff, especially his daily allocated individual ICU nurse never stops attending to his every need, monitoring, charting and making sure he is comfortable. They have all been so kind, caring and informing, not just to him but to us as well. Helen has really been ‘on top form’ asking, probing, questioning every procedure, and machine usage with her whys, what’s and if’s. It doesn’t seem to have mattered what we have asked, all staff have taken the time and trouble to explain our many questions. Helen says ‘we must be the relatives from hell.’ She is definitely her father’s daughter!
Tuesday afternoon was when a Neuro Consultant explained the severity of Dennis’s condition. We were told the future was pretty bleak, if he made it at all. However Dennis’s physique was on his side, even his beer belly, which had provided ‘cushioning’ for his internal organs. I think he would like to think it had come in useful. Initially we were told his heart, lungs and kidneys were in good shape. His lungs, ribs, diaphragm, spine and spinal cord were the main concerns. The prognosis was very depressing news. It was everybody’s worst nightmare.
Dennis always surprises us in everything he does and it would now be up to him to fight with all the effort he could muster with that sheer stamina and determination that is so much part of him. He is receiving the best care and attention available, this is the NHS at it’s best.
Wednesday 2nd July – Another difficult night was had by all and off we all went to the hospital. As soon as the accident had happened, Iain, Helen’s boyfriend had driven to us from
A research consultant asked to speak to us explaining that Dennis appeared an idea patient to be included on a drug that had been licensed for longer term use in
MaryRose travelled up from
Thursday 3rd July – Over night they started Dennis on the new drug – if he’s getting it. Somehow we all feel there is a completely different ‘aurora’ about him. He is a lot calmer and the transition between drug doses seems smoother, perhaps we are imagining it or it is the general series of events. Everybody is so kind and reassuring and all the ICU nurses seem to want to be allocated to him for their shift.
Dennis was taken down for another CT scan to see progression of internal organs. His tummy was expanding with what appeared to be lots of trapped wind. Somehow it had to be moved. Various sort of encouragement were introduced but weren’t working efficiently enough. Upon returning from the scan, Dennis’s condition deteriorated rapidly, his heart beat went all over the place and a team of 4 or 5 were by his bed, trying allsorts of interventions and support for a couple of hours, but he pulled through, panic time again. We always hate to leave him at night. They say we can ring anytime but prefer to only speak with one person, me.
Friday 4th July – His temperature is rising, we keep thinking it can’t go any higher but still it’s creeping up. Concerns are mounting for the bowel trauma. Other problems are surfacing and giving the medical staff increased cause for concern. The Dennis that was acknowledging our presence is now in a more sedate state, rather concerning for us but as long as he is resting and repairing we are happy, we just hope he is not giving up and things are shutting down, he needs those prayers.
Saturday 5th July - This morning when we went in Dennis was sleeping. His temperature was still very high, about 103 instead of 107! They think this is due to trauma rather than infection as he is not hot and sweaty, more heat generated from damaged internal organs. He is wearing a rugby type ice pack scrum helmet, chest blanket and gel pads under his arms and in his groin to try and reduce this. Due to the spinal injury, the nerves that control the bowel are either damaged or traumatised. He is also retaining a lot of gas. Although he has had an enema, the bowel is still causing concern, which is pushing on other internal organs.
When we returned in the afternoon, he had had another team of Consultants discussing the way forward. He had more tubes, medication and monitors inserted in the same or different orifices. The bowel was starting to move and when we left at 7.30 further interventions had been put on hold but things were being very closely monitored. If his condition did not improve they were talking about taking him to theatre to leave an open incision to relieve internal gases and perform a colostomy. If the bowel concerns are not addressed, increased pressure is being put on his diaphragm, heart, liver & kidneys. His sedation has been increased; we only got a slight opening of the eyes and a couple of nods. He is however breathing mainly on the CPAP machine (him breathing on his own with only intervention if the breaths are not sufficient to maintain adequate oxygen levels.)
We have phoned this evening and the experts are still discussing the way forward, it is going to be a long night,
Sunday 6th July - It was a very long and traumatic night, not just for Dennis, but also for us, sitting, waiting, praying and supporting each other.
When we rang at 11.30pm last night and they were performing a colonoscopy to check for a possible obstruction which may be causing the swelling. We rang back at 1 am to be told they had only been able to check the large bowel which seemed clear but could see inflammation in the small intestine. However, since the procedure Dennis’s blood levels & heart rhythm had deteriorated and that he may need to be put on kidney dialysis to remove the toxins from the blood. They would keep us informed of any changes and suggested we get some sleep, ha, ha.
I rang again at 3.30 to say his condition was still critical and that they would ring us if there was any change, his temperature was dropping slightly. We rang again at 6.30 and 8.30 to be told the Dr’s would be doing their rounds and decision making between 10 & 11 and to be at the hosp as usual at 10.30.
When we arrived there was a great deal of activity around his bed. We saw him quickly but were asked to wait. We were taken into the dreaded private relative’s room where ‘cards were put on the table’. Dennis’s condition had deteriorated rapidly and they did not really know why, they had been treating one area of trauma, only to be confronted with another. We were told he was a very sick man and the next 4 hours was crucial to his survival. They had tried several times to connect him to dialysis but it kept failing. His blood pressure had been dropping due to the veins expanding to the shock, they had needed to thicken it for him to undergo the colonoscopy and then thin it for the dialysis, along with the kidney/ blood problems, lack of urine output, liver damage, fluid leakage from somewhere but not sure where, plus other problems I can’t really remember.
A couple of hours later after a team of the neuro surgeon, general surgeon, registrar, two specialist ICU nurses and a sister all working on him since 8 am, had been able to stabilise him, although still critical. The neuro surgeon & registrar came to talk to us again. They were managing to sustain his levels but things could still go either way. They would need at least 4 hours on the dialysis to see if it would make any difference.
All afternoon we took it in turns to sit with him, talk with him and sooth him, his eyes flickered open at times and we were reassured that he would know we were there. Since we left him we have rung every 2 hours and the latest report is that although still critical, he is holding his own and that he is not causing as much concern as he was earlier in the day. They hope he will improve enough over night to undergo another CT scan to see what is going on internally and are still talking about a colostomy. We hope to get a few hours rest and will update you all tomorrow xxx
Thanks again for all your kind texts of thoughts and encouragement, it lifts our spirits when we read them to each other.
Monday 7th July am - What a night. I rang at 3.30 and again at 6.45. The reports were his temperature was down, below normal now but they say this is because his blood is being cooled as it is being filtered in the dialysis machine. The concoction of medication he is on has stabilised his deterioration, especially his blood pressure, but he is not causing them so much concern, although still critical, he’s doing fine! Wow, what a relief, a big hurdled crossed but lots more to go. We nearly lost him yesterday.
We will go in this morning, and will update on progress. All those thoughts and prayers must be doing him good, keep them coming x
Monday 7th July pm - We went in this morning and the dialysis machine had been working well all night. They were pleased with his progress, very small in terms of his overall recovery but major in our eyes! The team of experts have a morning briefing and Dennis’s case, I’m told, took a good hour of this. They are all intrigued as to why this ‘blip’ happened yesterday but are pleased things stabilised. The overall plan for the day was to keep him rested and stable. All other plans are put on hold for 24 hours so we will see what tomorrow brings. Although resting, when with him we are constantly telling him what is going on so keep the messages coming and we are repeating them to him. Once again, your good wish vibes must be getting through!
Tuesday 8th July - The report overnight and this morning was: ‘very stable, reducing drugs for blood pressure, dialysis machine still working, not causing any more concerns, what a relief.
When we arrived at the hospital they had disconnected the dialysis, there were concerns that he was not – passing urine, this had previously been expelled with the help of the dialysis machine. He was back on liquid feed, bowels working on their own. We waited for the Drs to come out of their ‘plan of action for the day meeting.’ Due to his erratic BP and rising temperature again, only 98.8 by the time we left this evening, they decided to leave him alone, in a sedated state, to rest and hopefully recuperate. Unfortunately he is still not passing adequate amounts of urine and with the rise in his temperature, which they are trying to reduce by frozen gel blankets, he may be back on the dialysis in the morning.
Wednesday 9th July – Today started as another settled day. The dialysis machine was connected again and his temperature was coming down. No sign of any developments on the way forward so we sat with him and chatted.
When we returned after lunch one of the ICU general Consultants / Anaesthetists, who had not spoken with us before, came over and said Dennis’s condition was under considerable negotiation. The general consensus was that they needed to get him in a more upright sitting position to help the diaphragm and internal organs. To do this they need to stabilise his neck. We were later informed that this way forward was likely to be taken by a Neuro Surgical Team rather than an Orthopaedic Surgical Team and would be discussing the options with us soon. We were then told that it is felt that possibly the best way was to insert plates, nuts & bolts, like Mecanno, and would prove more stabilising on the front side of the spine, operating round the shoulder blades, (makes me shudder to think about it.) With the tracheotomy in place this will cause considerable concern – so why do it? This will be one of the questions we will be asking. They say it will inevitably cause infection in the tracheotomy which of course leads to the lungs which are already experiencing difficulties. It looks like it will be a balancing act to provide the correct intervention at the most suitable time with everything else going on.
Just before visiting was finishing, they were due to ‘roll him’ to relieve pressure and stimulate circulation. This is carried out every four hours with the assistance of 6 – 7 nursing staff. They had previously reduced the sedation as his daily ‘waking up period’ had not taken place in the morning due to the dialysis machine being connected. We felt it a long time before they called us back in and we found out his heart rate was climbing rapidly, quickly being controlled by more drugs. We waited until it was coming down and rang about an hour after we got home. It was still high and fluctuating. Again why has this suddenly become unstable? Dennis is certainly keeping everyone on their toes!
We hate leaving him at the hospital, we dread going to sleep in case we get an emergency phone call, our hearts are in our mouths as we return to the unit, we wait in anticipation as the Doctors do their rounds and sit by his side wishing him well. It is a very rollercoaster existence for us all at the moment. Keep fighting Dennis, you can do it xxxx
Thursday 10th July – I rang twice in the night and the first time they were rather evasive again, which is always worrying, they give you the basic ‘hospital patter’ stable, comfortable, as you left him, remarks which leaves you wondering exactly what is going on. It really does seem to be a really bumpy rollercoaster ride. We are really concerned that he is not stable enough to take a traumatic operation and it seems that following more discussions between the different medical teams, the Neurologists want him more stable before they will consider the operation to stablelise his neck. However once this is performed, it should make his recuperation better once he can sit up.
Today he has had an X ray and ultra sound, he is still on dialysis, one of his chest drains have been removed and he has had longer periods of being taken off the sedation, although he does remain very sleepy. They have introduced more fluids which they feel will help regulate the heart rhythm. We have said they have to replace the beer that he would normally be drinking! We have been sitting in the relatives’ room while they change his tracheotomy. As we all know, lying flat does cause congestion on your chest, and this, along with the body fluids which would normally be expelled, are needing a little more help.
We are all touched by the kind and reassuring ‘blogs’ left on this web page. We know everybody is ‘rooting’ for him and shows the high regard in which he is held by all his colleagues, family and friends, we just hope he gets to read them one day soon. Your cards, flowers, generous offers of help and ready cooked dinners are much appreciated. Thank you all once again for being there for us all x
Friday 11th July – Where do I begin again? Dennis’s condition seems to be changing, more minute to minute, than hour by hour or day by day. After a reasonably stable night we arrived at the hospital to find him still off sedation and only on medication to regulate his heart and blood pressure, besides all the other drips and tubes. He is opening his eyes from time to time but looking quite vacant at us. This is causing concern to the Dr’s. We just hope it is still the sedatives wearing off and not a further complication from the accident. We have been told they will give him a further 24 – 48 hours before they make further investigations in this area. We were comforted in the beginning that, although frightened and afraid, Dennis knew who we were and could answer basic questions in the form of nods and facial expressions. If some permanent damage from either the trauma, an infection or other source has occurred, it may not be reversible.
The medical staff had done their morning rounds and were in their daily conference. Dennis experienced breathing difficulties while we were there but he is regularly suctioned from the nasal passages and tracheotomy to remove this. Anybody who has been with Dennis early in the morning knows he has a regular ‘coughing clear out’ Even our neighbour, across the turning circle has said how he misses hearing him have his daily session! We waited while they ‘log rolled’ him and his reading were more settled before we left at the end of morning visiting.
We visited the flat Helen is hoping to buy during the lunch period as we needed to take some photos for her Solicitor to enable him to sort a few problems out.
When we returned in the afternoon we found they had taken him off dialysis and his left chest drain had been taken out. We had a long chat with one of the ICU Drs who updated us on the way forward. I think the Neuro team are pushing the general ICU team to get him as stable as possible so they can perform the operation. If his condition remains stable, dare we hope, even improve a little, they are talking about operating on Tuesday. We will probably not get a ‘chat’ with a Neuro specialist until Monday now.
Whilst having this chat Dennis’s reading became even more erratic when the Dr suddenly said could we leave for a moment. One of the nurses came to see us about 15 minutes later to say that the lung the side the drain had just been removed from had collapsed and this was now being supported with the help of additional drugs. We waited while they finished stabilising him and then had to say our goodnights as it was the end of visiting time. We phoned about 1 ½ hours later and were told he was much better, they had put him back on ventilation as they wanted him to rest him so he could have a good nights sleep. I will ring again later and probably during the night and see what tomorrow brings.
We are getting a lot of delighted feedback on the addition of photos to the blog. I really want it to be a positive place for you to visit and as I’ve said before, not all doom and gloom. I wish I had more positive news of improvements but at the moment it is a very se-saw situation. So many people are congratulating us on producing this web page, thanks to Colin’s, expertise; I am just ‘rabbiting on as usual.’ We are thankful that you are such a part of our journey and now as the initial shock of the accident has sunk in a little it is refreshing to see little antidotes of happy times you have shared with Dennis, please keep them coming, these are what we hope to read to Dennis shortly to give him positive goals for his recovery.
Fay I love your dream, it does sound like Dennis, it could even be a bit of reminiscence on your part from our family camping holidays together!
Love to all and thanks again for being there for all of us xx
Saturday 12th July – Today has been another rocky ride. Dennis is still not as conscious as they would like and a CT scan was scheduled for this afternoon. However as they were preparing to take him down, various levels fluctuated and he became too unstable to risk the procedure. When we returned after lunch we desperately tried to stimulate him to acknowledge our presence, by the time we left he was slightly more aware, we hope another night of rest & recuperation will improve this.
Sunday 13th July – After a comfortable night, Dennis’s BP & heart rate were still being controlled with medication and stable. When we arrived at the hospital they were preparing to take him down for the re-scheduled CT scan. We saw him for a while and then left and had a stress reducing lunch time in Wimbledon Park with a round of crazy golf, then lunch, the others had a game of tennis and then plenty of fun with a football and the play area with Charlie.
When we returned Dennis was back in the unit and on the dialysis machine again. It is an amazing machine and within a couple of hours you could see his fluid retention reduce. He had longer periods of opening his eyes but still seemed rather vacant, although did respond to questions with blinks. The ICU Doctor that accompanied Dennis to the scan spoke with us and we were all pleased to hear that there were no abnormalities to be seen, that’s a relief.
We left Dennis restful and tomorrow we may hear more about his possible operation to plate his neck spinal injury.
Monday 14th July – I phoned at 12.30, just before going to bed, and I was told Dennis was comfortable, however I woke in the night and did not phone but when I did in the morning was told he had had a traumatic night and all medication had been upped again, oh dear. We were told the Neuro surgeon had been round in the night and wanted to see us during morning visiting.
Dennis seemed stable when we arrived. We had our chat. Due to him becoming unstable again the operation would be delayed. We asked many questions and the surgeon felt it would be quite straight forward to secure the neck as it was in good alignment. However they would be happier if he was more stable before undertaking this risk
There are still concerns to his lack of recognition and arm/hand movement but it is felt that due to the decline in kidney function, toxins in the system could be preventing this. We felt Dennis was opening his eyes more and his focus seemed better.
We hope he has a more controlled night and tomorrow we move forward again.
Your support and concerns continues to amaze us, we are so appreciative of all your prayers, good wishes and encouragement to Dennis and ourselves, thank you xx
Tuesday 15th July – Only by writing this blog do I realise what day and date it is, here we are half way through the month and what a journey! When I phoned this morning I was told that Dennis had experienced congestion on his chest again that had proved particularly difficult to be removed by the normal suction method through his tracheotomy and it became necessary for the Doctors to use a bronchoscope to clear it. This of course causes him additional distress which send his levels erratic so they up the oxygen and the medication which then puts him back again. It does seem the only way to alleviate this is to get him sitting up more. However he is being angled , usually on his left side, which is where he has the dialysis tubes, rather than the right side, which is where he has his chest drain, which simulates the lung to think it is in a sitting position and also stimulates the stomach and organs as it would if you were turning in bed. He is receiving such good nursing care by being rolled and massaged, approximately every four ours that his skin is showing no sign of breaking down, a definite positive point.
Just before lunch a Dr came to change his arterial line in his groin to one in his foot. All indwelling lines positions are changed approximately every 7 days to avoid infection.
Many of you will know, Helen is buying a flat in Wimbledon. The vendor has been very slow in organising certain pieces of work she wants agreed before completing. One of these is a repair to her front porch and the other is getting her electrics checked, which of course Dennis was going to do, once we had a key to the meter cupboard and to know which fuse box was hers!, basic things really. At lunch time we met a builder friend and this evening we have been speaking to an electrical friend. These are all things Dennis ‘just did’ and oh how we miss him.
Dennis has this amazing warm air type duvet on, as his body temperature drops during dialysis, which makes him so snug and warm his favourite pastime is snoozing. We were at his bedside when the Drs did their round, about 8 of them. Of course we had to ask questions! If he stays stable, operation maybe Friday. Additional oxygen supply now is minimal and he’s only on a low dose of medication to regulate his heart rate. I have just spoken to his night nurse and she has not seen him for two days and feels he is more knowing and responsive so that is a good sign. Helen asked him earlier today if he would blink if he knew who she was, he immediately blinked constantly which really made our day. Lets hope we have no more ‘blipss’ and we move forward a little more tomorrow. x
Wednesday 16th July – I’m happy to say that I do not have any ‘blips’ to report today! However, I do not want to speak too soon or tempt fate. Dennis remained stable throughout the night and all day today; if he continues like this they are talking about operating to stabilise the neck injury on Friday. This of course does not come without its own risks but we have to leave the timing and his general state of health to the experts.
I am also pleased to report that Dennis has seemed a lot more awake today. He has kept his eyes open for much longer, they seem a lot clearer and we are sure he understands what we are saying although only communicating through blinks and facial expressions. He seems to know what happened and where he is. He appears quite happy for us to rabbit on around him, telling him of things going on and all the good wishes and cards being sent his way.
He has been taken off the dialysis machine although still not passing urine. Before, when taken off, his temperature starts to rise, hopefully the internal trauma is reducing and this will not happen to such a degree, all we can do is hope & pray.
Thursday 17th July – Another day of stability, I don’t want to say too much, too soon! If things hold for the next 12 hours we are set to go for approx 9.30 tomorrow morning.
It is not going to be an easy day for us. Helen & I will try and finish tiling our bathroom, Dennis was supposed to cut the intricate tiles around the back of the cistern etc so it will be something positive for us to do, as long as we don’t make too many mistakes and run out of tiles!
If you have clicked on the ‘blog’ page you will see Colin has posted some more photos. I think he must have taken these from his photo collection as there are a lot of Dennis & Charlie, but he is the apple of Dennis’s eye so he would be happy with these, don’t know about the one of him asleep on the lounger in the garden!
I will update on progress as soon as possible tomorrow. Please keep your thought and prayers coming, the operation should take 3 – 4 hours.
Friday 18th July – 12.30 pm, have just heard the operation has been cancelled.
We rang at 9.50, to give the nurse time to get back from accompanying him to theatre, to be told there was a delay on their part and would now be around 10.30. When the Anaesthetist came he was concerned Dennis’s oxygen levels had dropped which can mean congestion on the lungs which stops them absorbing all they should. After he had an X-ray it was found he does have a chest infection. Of course it will not be easy for him to recuperate from this lying down. The operation is currently being put on hold until at least Monday, depending on how he responds to the antibiotics, which always usually upset him, so here’s hoping. We hope we have not missed our ‘window.’
I will update again when we have seen him this afternoon. Some friends are coming over later so I may not update this until later than usual.
Thanks again for all your thoughts & kindness. As one friend said to me in a text, “My heart is in my mouth so goodness knows how you’re feeling.” I know we are all feeling the same. xx
Friday 18th July – p.m. Dennis’s seemed rather fed up when we returned this afternoon, he appeared disappointed that the operation had not gone ahead; he must be fed up with looking at ceiling panels. During lunch his indwelling intravenous lines were changed. As I’ve said before, these are changed regularly, to avoid infection. The appropriate antibiotic is being administered to fight the infection and we hope this is fast acting. When the Dr’s did their rounds they explained, that the risk of preceding with the operation with the start of an infection, outweighed the risk of not doing it at the present time, they are the experts. More news tomorrow x
Saturday 19th July – We are pleased to say that we do not have much to report today. It appears cultures have identified the correct antibiotics are being used to combat Dennis’s lung infection and this, along with a nebuliser to soften the congestion, is being regularly suctioned to remove the ‘nasty bugs!’
Dennis had his eyes open for longer this afternoon and we had taken in his glasses. As these are vari-focals we are not sure how much he can see in the position he is laying. We had also taken in a few of your Get Well cards and held these up for him to see. He moved his eyes up and down as I read your good wishes to him.
He is back on dialysis to remove the toxins in his blood which are not being expelled through his urine. We asked him again if he knew where he was and what had happened and he indicated that he did. If they can keep him stable over the next 36 hours and the infection reduces they may consider operating on Monday or Tuesday.
Further update tomorrow, night x
Sunday 20th July – Today has not gone quite so smoothly, unfortunately. The antibiotics and nebuliser are doing their job but the mucus still has to be got up! As we know, Dennis is a naturally ‘phlegmy guy.’ Although he is regularly suctioned, plugs continue to collect and intervention is needed to remove them. This of course causes Dennis distress that reflects in his monitored functions.
However, he remains aware and acceptance to his predicament and surroundings. It will be so nice when he is able to be sat up and hopefully regain some movement.
Although today has been a bit more traumatic, we wait till the morning for the neuro surgeons and anaesthetist to say whether they feel the time is right for them to perform the operation. Watch this space! x
Monday 21st July – Last night we got a much dreaded call from the hospital. It was to say that Dennis had developed a bleed from the bowel and that emergency surgery may be necessary to stem it. We have always said we would like to be informed, at the time, of any concerns, rather than after the event. We had a very apprehensive night but were told in the morning that the bleeding had reduced after he was taken of the dialysis and the blood thinning drug and that they would continue to monitor the situation. This of course has put the spinal surgery on hold again.
Today was a constant flow of doctors, radiologists, gastro specialists and lots of discussions. It has been decided that they will continue to monitor and see what the morning brings.
Dennis has been a lot more aware today and we took him in his glasses and more cards. He has had a large one from the Wimbledon Taxi drivers and associates and I read it and showed it to him asking him to decipher in his mind the names and registration numbers, something for him to think about. His eyes are so much clearer and from asking a series of questions appears aware of the situation and his concerned about us, so typically Dennis.
Helen became his personal DJ as we played him a selection of his favourite pieces of music as the nursing staff sang along to the likes of Dolly Parton and Doris Day! along with a bit of classical, perhaps not every bodies taste in music.
Again, we will see what tomorrow brings x
Tuesday 22nd July – At 2.30 this morning we had another dreaded call from the hospital. The bleed into the bowel had increased and it had now become a priority to operate. Specialist radiologists had been on standby and would be coming in to perform the procedure. Dennis had been asked and given his consent to the operation and also agreed that we should be informed. As I said, he had been much more awake, alert and responsive during the day. As you can imagine, we did not get much sleep for the next 4 hours.
I was unable to get any information until 7.30, when he was settled back in the IC unit. They reported the operation had gone well, they had identified, and embillised a bleed in the artery that feeds the large bowel. During the day he was closely monitored and his blood levels had returned to normal. However, it was found that there were large clots of blood in the rectum that had to be expelled.
I have just rung before going to bed and the clots are still being evacuated and he remains relatively stable, here’s hoping he does through the night. There is now talk of performing the spinal operation on Thursday.
Wednesday 23rd July – Today the staff have been preparing Dennis for the spinal operation to go ahead tomorrow. Bleeding from the bowel has ceased. There are concerns that his heart rate is slightly lower than they would like so before the spinal operation, to avoid any trauma in theatre, Cardiologists are inserting a temporary pacemaker to stimulate the heart, should the rate drop. This should take place at approx 8.30 and the stabilisation of the neck at approx 10.am. This is expected to take 4 – 5 hours. We had said last week, we proposed to finish tiling the bathroom, but in hindsight feel this is not such a good idea to be in charge of angle grinders and powerful water cooled electric tile cutters! Instead we started sorting some of Dennis business files, I have always said he should do a course in office management, filing is definitely not one of his attributes!
Registrars have presented to Dennis today the implications of his accident and the proposed operations tomorrow and the risks. Dennis has indicated that he has understood this and given his consent. We personally feel it is too early for the full implications of the accident to be presented to him, yes, explain the operations they propose but we are trying to keep his moral up to continue fighting, however, we appreciate the doctors need to gain the patients consent. Although we are telling him all the time not to worry about things and that we are there for him 100%, we asked the Doctors to reiterate this fact to him during their discussions.
We hope Dennis will have a stable and restful night so he can address the new challenges of tomorrow. I hope to update the blog as soon as I am able.
Our love again to you all for your support, I know a lot of you pray for him all the time but please keep them coming tomorrow morning.
Thursday 24th July – Today I am writing the blog everybody has been waiting for, YES Dennis has had the spinal repair operation, whoopee! We’ve been here twice before but today it actually happened.
Dennis went for the temporary pacemaker procedure at around 9 am and then, after a little wait, went to theatre. This was performed by a specialist in the Atkinson Morley Hospital attached to St Georges.
After a pretty apprehensive day, enlightened by the presence of Charlie, we heard at 3.40, that he was just coming through the door of the IC unit. We waited an hour while he was settled and his allocated nurse came to see us. She advised us that the operation had gone well, the back of his head had been shaved, he was sitting up, eyes were open and he was indicating his wishes but obviously rather sleepy. She also let us know that his face and eyelids were rather swollen and puffy.
When we saw him we were rather surprised by how puffy he was, but by the time we left, 3 hours later, this had already reduced considerably. A Doctor confirmed what the nurse had told us but also advised us that this was only a small step in his overall recovery. It will obviously give him a new angle of life and make nursing him so much better.
Dennis seemed reassured of our presence and dozed whilst we were with him, it was so nice to see him resting in an upright position and with the neck collar off. Just before we had to say good night, the surgeon came to visit him. He reiterated the success of the operation and also mentioned that the pacemaker had been required during the operation, thank goodness it was implanted. We are sure tomorrow Dennis will look and feel so much better, As many of you will know how you feel for several days after an operation, without spending the last three and a half weeks flat on your back in a head brace, and battling the repercussions of the accident.
We appreciate all your good luck thoughts, prayers and texts sent to us all today. We told Dennis how many people were wishing him well and we hope in the next few days we can show and read him some more of your affectionate messages, thank you all once again x
Friday 25th July – Well what a day today has been. Overnight Dennis remained relatively stable and when we arrived at the hospital this morning he was having another thorough session with a Physiotherapist. This left us a short visiting time but his well being comes first. When we did get to see him, he looked exhausted and very fedup. He was also indicating pain in his right shoulder which it appears is becoming unaligned due to muscle wastage. He looked very frightened and anxious as his arms had been placed on a table in front of him. He was sitting looking at his hands that he could not move.
On the way into the unit, we had come across one of the Doctors that had been looking after Dennis. He advised, that although yesterday’s operation had been a positive step forward but gently reminded us that there were still many hurdles to cross and Dennis’s moral and wishes had to be considered in all future treatment. Some patients cannot accept such a disability. As we knew Dennis’s mood was particularly low this left us very concerned.
When we returned in the afternoon, we were told a Doctor wished to see us. Firstly he said Dennis had seemed to stabilise well since the operation. His breathing had improved, his need for additional oxygen had reduced, his blood pressure was good, his heart rate was more consistent, urine content had improved and he was much more alert. He then said he had good news for us. Apparently when Dennis was first admitted to ICU enquiries had been made to his long term recuperation and they had just heard from Stoke Mandeville Hospital in Buckinghamshire that they were offering Dennis a bed in the specialist spinal Intensive Care Unit. This came as an incredible shock to us, so soon after his surgery and the conversation that morning. After further discussions, we asked if this could perhaps be delayed to Monday to give him more than 36 hours recuperation. They felt that if we did not take this offer now it could be lost. Of course we want the best for Dennis and this specialist unit could be just what he needs to boost his moral. I had printed off some photos of immediate family and stuck these to an overhead lamp this morning. He seemed a bit upset when he first saw them but when we returned in the afternoon he seemed to be getting great comfort and reassurance from them.
When I went back in I broached the subject with Dennis, as the Doctors had not yet spoken to him about it. I explained the situation and the offer of this specialist rehabilitation, how much effort and commitment it would take on his behalf but that it would hopefully reap rewards. Dennis very definitely confirmed he wished to accept this challenge. I told him how proud we all were of him and that we would be supporting him all the way. How much love and good wishes were being sent his way and how much we all wanted him back. We will not know till the morning if Dennis has remained stable enough for this transfer to take place. We will keep you informed. We believe there is the possibility of supportive accommodation for immediate family so we are asking the hospital to look into this. We have been there for Dennis all the way so far and want to be there for him in this new challenge he will be facing x
Saturday 26th July – Dennis had a stable night, although not much sleep as there were a couple of admissions to ICU over night. Transfer to Stoke Mandeville was on countdown. We arrived at the hospital early and sat with him while he was prepared. The ambulance came at about 12.10 and he was loaded aboard the ambulance by 1p.m. Escorting him was a specialist Doctor and Intensive Care Nurse and loads of equipment and drugs. He arrived safely on a blue light journey and when I telephoned at 2.50 they were settling him. I rang again about 5pm and was told that he was settled and would undergo a complete reassessment to include risk assessment, swab cultures, X-rays, MRI, wound and bowel management. This would include his shoulder pain and tracheotomy assessment. We feel Dennis’s moral will improve greatly once he can communicate; we all know how Dennis loves to talk!
It is Helen’s birthday tomorrow and we both want to stay with Dennis next week. Arrangements have been made for temporary accommodation for us to stay tomorrow night and will be reviewed on Monday. We will all travel up tomorrow, have lunch together and visit Dennis. We will let you know how he is when we see him.
Sunday 27th July – After watching Helen open her birthday cards & presents, which is a tradition, we finished packing our bags and doing odd jobs, we set off in two cars, Helen & Iain in one, Colin, Aneta, Charlie & I in another. Helen & Iain made the journey in just over an hour, for some reason we took 3 ½ hours! Don’t ask! Anyway it was nice Helen & Iain were with him.
We are just sitting having dinner in a nearby pub before the others set off home, we missed lunch! I will type more information tomorrow but Colin will download this when he gets back. Dennis is settled in a single room with very attentive staff. He was definitely pleased to see us as I think the last 36 hours have all been a bit of a blur. He is running a temperature, which we are told is expected after the operation and journey. They are totally reassessing him from all angles so this is going to take a few days. Although he is back on his back, until the spinal surgery has been checked, he is on a super duper bed that tilts on either side so gently rolls him. I am sure this is the place that will offer him the best possible care for the future.
Monday 28th July – Not having direct internet access here it will be more difficult to download such regular updates. I will keep writing them as we go but they may be downloaded in a batch.
Before Helen & I went back to the hospital on Sunday evening, we had been assured temporary hospital accommodation had been booked for us for two nights, however when the staff went to collect the key, the room had been let out to another lady, after discussions, on the staffs part, not me having a paddy, she agreed to move to another room. The accommodation was very basic however it was somewhere to lay our head. Today we were able to speak with the relatives’ accommodation office and we are now in a little Uni Campus type accommodation just on the outskirts of the hospital. Now we have a shared bathroom & kitchen so can be a lot more self sufficient. It is really weird being away from our comfort zone without our personal belongings around us. Minor to what Dennis is going through.
Dennis’s temperature remains high, but controlled with pain relief and antibiotics. He appears less stressed and anxious. As I said yesterday they are giving Dennis a complete overhaul, let’s hope they are a thorough as the Carriage Office and he passes first time as his cabs usually do when he prepares them for passing!
Early afternoon Dennis was taken for a CT scan. It appears the Spinal Consultant may be happy with the results of this to show the spinal repair which may save him having to undergo another MRI scan. Early evening one of the Doctors showed us the computer images but need the official report and Consultants say so before they sit him up.
All the staff are lovely, as they were in St. Georges ICU. We had just got to know the team and they us so we are doing a lot of chatting and re-telling of Dennis’s personality and attributes, so there is plenty to say!
Tuesday 29th July – Today we were in with Dennis when the physio came. He is the head guy from the Spinal Unit and gave him a good work-out and explained to us what they would be working towards achieving. Already they had found improvement in his flexibility. Dennis’s nurse today grew up in Wimbledon and one of the Drs comes from Kingston so there was a fair bit of reminiscence in the conversation. We keep saying, as we all know what a sociable friendly guy Dennis is, it is so hard for him not to be involved in these conversations. We are anxious for him to be given some form of speech as soon as possible as we are sure this will improve his moral, along with sitting up, but they keep saying this may be a while, until they can be sure that he can breath and cough on his own.
The test results for MRSA, C.difficile, infections and other swabs have now been cultured and everything seems fine. There also seems no indication for the high temperature so it may have just been caused by the jolting of the transfer. Due to this clearance he has just been moved into the main IC unit which is a lot cooler than the isolation room. We still await the all clear from the CT scan.
Wednesday 30th July – Yesterday we had been concerned by Dennis’s low blood pressure and had reiterated the similar series of readings that had identified the arterial bleed into the stomach at St. Georges. We were advised that they did not feel this was the problem. However, when I phoned before going to bed, his haemoglobin was low and it was felt that there was a bleed from somewhere but they were unsure from where. Although we had also raised our concerns that they were giving Dennis Heparin to thin his blood to prevent DVT, they stopped this once the bleed was identified in him faeces. Helen & I both had a pretty restless night. I phoned early morning and although stable after some additional support, the bleed would need to be investigated.
We had a phone call from the unit a couple of hours later to say Dennis was indicating he wanted to see us. We got to the hospital in record time. Everything was fine when we got there however we did speak to the medical staff of our frustration as to not having the results of the spinal CT scan and other issues that were reoccurring. The Neuro registrar was bleeped and examined Dennis about ½ an hour later. He advised that he was happy with the CT scan and that Dennis could be gradually sat up again. We put up the family photos that had brought him so much please during his two days sitting up at St Georges. He had been changed on to a ripple bed and was asking about the various pieces of equipment that surrounded him. After this he sat down with us and we had a long chat about the long term challenges and goals. When we returned to the unit the physio was working with Dennis. We thought in his fragile state this may have been less rigorous, but not so. The ICU Dr then asked if we would like to catch up on their findings since Dennis had arrived at the unit. An abdominal CT scan was arranged for the afternoon.
When we returned another Neuro specialist came to us and said that on further examination of the scans, they had decided to ‘er’ on the side of caution and re-scan the thoracic damage at the same time as the chest scan, so Dennis was flat on his back again! We felt very frustrated & despondent.
When we returned in the afternoon everything had gone well and we were told that there was no evidence of a bleed. So where is the blood loss going? Report of the spinal scan will hopefully be available tomorrow.
Dennis was given additional fluids and his BP rose. Otherwise he remained stable. We stayed with him till late, chatting and reassuring him.
Thursday 31st July – We had thought about popping home yesterday evening, but due to Dennis’s instability did not feel comfortable leaving him. Today he has appeared relatively stable. There are concerns that his sodium levels are rising, this is being closely monitored. Probably due to this Dennis’s mouth seems very dry, there are pink sponge lollipop mouth cleaning sticks which we regularly moisten and refresh his mouth, Dennis enjoys this, especially when Helen does it. I know he is her Dad but she really has a natural empathy.
For our own peace of mind, we wanted to meet Dennis’s night nurse before we returned home. This was the same male nurse that he had had the night before so we were comforted that he was not meeting him for the first time. We explained we were going home, but that we had not told Dennis as we did not want to make him anxious. We did however ask that if there was any deterioration that he let us know and give us the extra time to get back to him. Fortunately Dennis was fine.
Home meant more bills. It also meant a chance to do a couple of loads of washing and have a nights sleep in our own beds. The mattresses in our accommodation are rather basic and Helen says she can hear me ‘boing’ when I turn over!
Friday 1st August – Colin was able to return with me to the hosppital and we set off about 11am this morning, 1 hour later than we had hoped! We got here in just over an hour, not three and a half like last time! I had telephoned to let Dennis’s nurse know we would be there, but later than usual. The nurse put the phone to his ear so I could talk to him.
When we arrived he had had his morning physio session and was pretty exhausted. Although medication has been give, there are still concerns for his sodium levels, tomorrow he may need to go on dialysis again.
Whilst walking through the corridors we met the neuro registrar that had spoke to us the other day. We asked about the thoracic injury (between shoulder blades) and when it would be likely Dennis could sit up again. He told us they still wanted to treat that area as unstable, as although it was healing and fusing naturally, there was one area that they wanted to be absolutely sure it was stable so as to prevent and further weakness or damage, poor Dennis. He was mouthing words to us today that we found difficult to interpret. After using a letter board we came up with the words ‘I want to go home.’ I had to explain that we wanted him home too but we were unable to at the moment. He indicated that he wanted to know when and I had to tell him it would be at least 6 months. It is so hard to stay strong through his obvious disappointment and distress.
Today they have tried Dennis on increasing periods of breathing on his own, without the ventilator, to a total of 1½ hours. He coped well & they were pleased. This is a big step towards being able to come off the ventilator and the tracheotomy and eventually speech & food!.
He has appeared to have a relatively stable and calm day. However we do not want him to become too placid as he needs to maintain that fighting spirit.
Saturday 2nd August – Helen drove Iain, Aneta & Charlie up this morning. I had booked them into the local Olympic Lodge Hotel which has hosted the para Olympics. However this was a disaster, part of these were there was no travel cot as booked, when it did arrive it was broken, then some guests returned from a party at 3a.m talking loudly & slamming doors and every footstep and lift movement could be heard throughout the rooms. I think we will need to find some alternative accommodation for the future. It is nice all being together but does turn out expensive with all the meals required. Our little room plus shared kitchen & bathroom is not ideal to cater for 6.
Dennis was quite anxious today; maybe he was pushed a little too hard, too fast yesterday on the ventilator. The anxiety continued into the evening until they upped his oxygen and ventilation support. There has been a slight bleed but he seems to be holding his own with the help of the medical team and medication. He has been given a glucose drip which seems to be reducing the increased sodium levels.
Sunday 3rd August – Dennis has now had about 9 units of blood since this second bought of rectal bleeding. This is maintaining his haemoglobin levels, heart rate and blood pressure but we still wonder where it is going to constantly being topped up. Nobody seems to be able to answer this question but our concerns are increasing. Dennis’s stomach, which had become incredibly flat, is now starting to expand, which we feel must be the missing blood but where is it coming from.
Things do not appear to move as fast here as St. Georges. As a teaching hospital we were spoilt with a team of doctors, often ten during the day and at least three at night. Here there one or two in the day and at night and at weekends only one doctor for Intensive Care, High Dependency and often helping out in casualty. The St Georges team had got used to us and got to know we liked to know what was going on, even though it was usually bad new, this was often in the form of ‘catch up sessions.’ We appreciate the medical staff need to get to know Dennis and us but today we asked to speak to a doctor as we felt there was too much going on that we did know how they were approaching it. As Colin was going home he was looking for some answers to some questions. The locum doctor on duty was a little reluctant to talk to us but what he told us reassured us. If Dennis’s condition due to the bleed had become critical he will probably be taken to a hospital in Oxford for emergency investigations, however they are keeping him stable until everybody is back at work on Monday morning! Tomorrow he is likely to have an endecoscopy to see if the bleed could be from an ulcer. If not, he may then have a colonoscopy followed by an angiogram, poor Dennis, more traumas.
Monday 4th August – After our evening and morning call to the night staff for an update on how Dennis was, we telephoned again before morning visiting to see if there was a plan of action for the day after the Doctors rounds. We were told decisions were still being made and to visit as usual.
When we arrived we were told a CT scan had been organised but first they wanted to change his femoral and arterial lines for drug administration and blood taking (as they do every 7 – 8 days to reduce the risk of infection.) We later found out that it had been placed in his jugular vein which, although a very good entry point, is a shame really as this is so close to his face, ear and tracheotomy and which pulls and disturbs him. We were able to visit for about an hour before this happened. We phoned again during our lunch; patients rest time, to be told he had just left the unit for a CT scan. We waited an hour and returned, only to find there had been a cancellation and he was undergoing an endoscope and colonoscopy! Poor Dennis
When we were allowed in Dennis was surprisingly aware, as he had been slightly sedated for the procedures. He was once again reassured by our presence and nodded acknowledgement and agreement, or disagreement, to our ‘chit chat.’
Dennis has had a particularly intrusive day but has coped well. Although his heart rate and blood pressure fluctuated slightly during the preparation for these procedures – who’s wouldn’t – he maintained his breathing, with the support of oxygen and the ventilator, very well. We are told it is usual for blood pressure to fluctuate with patients with spinal injuries.
Tuesday 5th August – Dennis has large areas of rash down the sides of his trunk and across his right shoulder where he has had the intravenous drip inserted into his neck. The medics are aware but it looks quite raw however by the time we left this evening it looked less angry. His temperature is up again to 39.5 so we have been making up cool packs by packing ice in examination gloves and wrapping them in medical type J cloths! We place these in his groin, under his arms and in other ‘hot spots’ on his body. These definitely help reduce the heat from the surface of his body and hopefully the rash.
When we arrived he complained to us of another headache. They appear to be sharp shooting pains in the back of his head, which is where the ulcer is from the neck collar rubbing. Big discussions were held on how to treat it. My big gentle giant is very sensitive! Antibiotics never suit him, he is allergic to asprin and constant painkillers cause havoc on the stomach. They also may have aggravated a stomach bleed and caused the bowel to stop working. The Drs are racking their brains to address the pain but not cause additional complications. The Pain Management team have been called in to address their concerns.
During the administration of medication which can sometimes cause him distress, we reassure Dennis by holding his hand or rubbing his arm. Dennis’s arms are often propped or supported on special supports, towels or pillows. Whilst holding his arm this morning I was sure his arm moved towards his body. I mentioned this to Helen and during his afternoon physio session Helen told the Physio. He tested this reflex with Dennis. He was able to move both arms slightly towards his body. We do not want to get too elated as we have been told sometimes spinal patients can make movements one day and not the next. However we do feel this is a positive development and it is very early days and that he was lying flat on his back.
Dennis seemed a little more un-nerved today and became anxious if either of us needed to leave him. The staff are very kind but of course they don’t know Dennis like we do so we are very much his voice, eyes and ears. We always try and relay his like, dislikes and concerns to all members of staff that care for him.
Wednesday 6th August – When we arrived this morning the Drs were doing their rounds and then he had the physio. By the time we saw him he was pretty exhausted. He slept, that was fine as if he is able to sleep he is stable and content. Sleep is often disturbed by the build up of secretions on his chest which need suctioning. This is never pleasant but necessary.
The pain management team did not visit today but the spinal registrar did. He is really nice and the same person that spoke to us last week. He was pleased with Dennis’s improvement and slight movements which shows possibilities for the future. Time will tell. We are frightened to get too excited but this is positive developments.
After talking to him the registrar asking Dennis if there was anything he wanted to ask and we also asked him. Straight away he indicated ‘When could he come off the ventilator,’ ‘When could he have his home CPAP (ventilation machine when he sleeps which would mean he would be off the tracheotomy and able to speak)’ and ‘How long before he could move.’ The registrar was very reassuring and explained timescales etc. The doctor also showed the nurse a different way to support Dennis’s head, whilst lying flat, without putting so much pressure on the back of his head.
Again the physio visited before we returned from lunch, so Dennis was pretty exhausted and slept for most of the afternoon. Although he had woken for short periods, when it came time for us to leave he shook his head vigorously and looked really sad. We assured him we had been with him all afternoon and would be back in the morning. He looks so helpless and vulnerable lying there attached to all the different pieces of equipment and machinery.
Thursday 7th August – Have just popped home tonight with Helen and there are a couple of things we both have to do but I go back tomorrow morning with Colin. I am sorry the hospital has been unable to sort out the wireless internet access and I had hopped to get on the patients access but with no success. As I am sure you can imagine, I have not been taking this quietly but have been battling NHS red tape so hopefully next week something will be sorted and you can receive the daily blogs.
It has been lovely to read all the new messages.
Dennis is not quite ready to receive cards yet. We have plenty to show him, I have read him several but I am sure once he is sitting up and able to take more interest in his surroundings he will enjoy receiving them himself. When this happens I will let you all know his address, thank you. Thank you also everybody for all your good wishes and messages of encouragement for Dennis and ourselves, we do so enjoy reading them and they give us strength and support to carry on. I know a lot of people read the blog but may not comment, please do, we like to hear from you all, thank you X
Today has been another busy day for Dennis, with more physio, Drs pondering over him, his feeding tube changes, which could not be pleasant and being given medication and personal care. We know he takes great strength from us being there and this afternoon he shook his head when we told him we were popping home for the evening, but after reassuring him he accepted our reasoning. I know it sounds silly but we feel it is like leaving your child as they attend nursery. He is so vulnerable and defenceless.
Friday 8th August – Having turned around two loads of washing, opened the post, done some administration and made several phone calls, Colin & I loaded the car with a few extra home comforts and headed back to Aylesbury. We phoned the hospital on the way to be told they were trialling Dennis on a new form of ventilation support, to prepare him for the smaller system used in the Spinal Rehab Unit. We were told his anxiety levels needed to be kept to a minimum for him to obtain the most benefit from this support. We put our foot down and headed to the hospital!
When we arrived he was fine. We felt a bit like, ‘We leave him alone for one night and he is started on something that could potentially be stressful to him without us being there to reassure him.’ As I say, we feel like leaving a loved one on the first day at nursery! When it was explained to us, it appears the ventilator is forcing more air into his lungs to make him take less, deeper breaths, rather than more shallower ones. He appeared calm and to be coping well. The ventilator is set At 14 breaths per minute. Dennis had been taking around 23, so there was quite a bit of adjustment. We still cannot see how doing more for him, rather than him making the breaths himself can be beneficial, surely it is making his lungs lazier. We will be asking the Drs this question, lets hope we don’t have to wait again until Monday morning!
Colin had downloaded a Star Trek story read by William Shatner. We asked him if he wanted to listen to it and placed it in his CD player. He listened intently and showed his involvement when we spoke to his nurse and interrupted his concentration. That’s definitely a Dennis reaction!
Helen is having three days at home. Iain moved up from Reading to be with Helen and got a job in Kingston, just as he did, Dennis was moved to Aylesbury and Helen has been here with me, so hopefully they will have some quality time together. Colin is here, supporting his Dad and me. We are very lucky, we have two wonderful children, we are very proud of them and their partners.
Saturday 9th August – I omitted to put in yesterdays ‘blog’ that two angled mirrors have been set up above Dennis’s bed so he can look upwards into them and see across his bed into the unit. I think he is a little perplexed as to the scale of things and obviously his view is limited. He also has a television at the end of his bed and he watched a bit of the Olympics this afternoon, the News is depressing.
Dennis remains responsive; he nods or blinks his agreement or disagreement and enjoys listening to things we tell him, but is still so frustrated that he cannot speak. I have told the Drs that I think it is unlikely that his interaction with the medical staff will improve until he can communicate with them. I feel he is reacting just as I would expect him to and not anything in particular to be concerned about. The Drs are concerned he is depressed, who wouldn’t be. What do they want him to do, have a big grin on his face all day? He keeps his eyes shut most of the time, unless he’s looking at us, but is well aware of what is going on.
Dennis seems to be coping well on the change of ventilation, which was apparently initiated by one of the spinal Drs. There have been a few occasions when there has been controversy in his treatment, I hope the correct decision has been made for Dennis’s well being, we are in their hands. We don’t want to hear them say ‘ in hindsight’ too often.
Sunday 10th August – Colin & I went in to see Dennis this morning, Mary-Rose & her daughter Claire were with us for afternoon visiting, it was lovely to see them both. Dennis was pleased to see them as well. The physio and his regular turning session had taken place so he was initially rather tired but again enjoyed listening and nodding acknowledgement as we talked over him.
The ventilation has been left the same as yesterday and Dennis is still coping well. We all left a little earlier than usual as Colin needed to return home and we went out to dinner and then back to Claire’s about 20 miles away to stay for the night.
Monday 11th August – Dennis is still pretty low in mood, he is desperate to get rid of the ventilator and tracheotomy and so get his voice back. We know he cannot function without either at the moment. Mary-Rose & I spent the day with him. Mary-Rose left late afternoon as she had an appointment with her daughter. Helen returned early evening. Dennis was pleased she was back.
Tuesday 12th August – Mary-Rose joined Helen & I at the hospital this morning. Mornings are always the busiest time and by the time Dennis had been seen by Drs, physio and a ventilation technician it was nearly lunchtime. When we returned in the afternoon he had had a nice relaxed sleep and was more awake, until the physio came again! However, after another snooze while Helen & I gave him a pedicure and hand massage he was rejuvenated and was more awake. The television was on and we talked him through some of the Olympic events. We reiterated the new breathing machine technique in preparation for his imminent transfer to the more portable support system. Dennis’s chest excretions seem less and he is getting so much better at bringing them up himself. We try and explain to Dennis how far he has come since the accident and how much we see he has improved, but all he seems to see is what he can’t do.
Wednesday 13th August – Today has been a momentous day! Dennis has taken off the large ventilator and introduced to the ‘Breas’ portable ventilation system used in the spinal unit. Dennis adapted well, they are all very pleased with him. He still has a long way to go but compared with where we were six weeks ago it’s unbelievable.
In the days ahead, he will be monitored closely as to his progress. This ventilator is currently supporting him with large deep breaths to expand the lung as deeply as possible to remove excess secretions which have to be suctioned via the tracheotomy which is pretty distressing for Dennis. He is such a good patient and knows this and other invasive procedures have to be done for his well being. The physio sessions are really aggressive on his chest which does help with the removal of these secretions.
As and when ICU are happy with his transfer to the Breas machine and when a bed is available in the ‘Acute’ ward he will be transferred. There we are told, once stabilised again, he will be set a gruelling rehabilitation regime. Dennis is aware of this and apprehensive we think as to how he will confront this.
When we arrived this afternoon, the physio had already visited, which had allowed Dennis to have a rest before we got there. He stayed awake for the next 5 hours which is a record! During this time he watched a bit of television which included some Olympic coverage. As usual for the Dennis we know and love, he is really ‘on the ball.’ Although limited vision of things, he wants to know what every dial, machine and procedure entails. Helen said to him today, ‘it is great you are getting your character back!’ Long may this progress continue.
Thursday 14th August – Dennis’s wakefulness unfortunately did not last. We popped to the shops before visiting this morning to buy him a science fiction type DVD as the reception on the TV is very poor. However when we arrived he was really sleepy, he had of course had his usual action packed morning. He was comforted that we were there. We left for lunch and packed our bits in anticipation of returning to Wimbledon for the night. Helens’s purchase of her flat is progressing and she hopes to move in on 1st September, she therefore has lots of things to organise so she will stay at home and spend some quality time with Iain of course and Colin will return with me tomorrow morning.
When we went back in the afternoon, he was still very sleepy. We sat with him for a while but knew the physio would be visiting soon. We asked his nurse if it would be possible to visit the spinal ward when Dennis would be transferred as he had been indicating to us that he wanted to know what to expect. They were pleased to show us around. It is a very light and airy area with obviously everybody in a similar predicament. We will found out more when he is actually transferred.
When we returned he was still sleepy, we gave him a nice leg and foot massage, the leg pumps indent his legs, so we like to moisturise, exercise and stimulate circulation. Dennis was very relaxed. We told him we were returning home but I would return around midday tomorrow with Colin. He does not like us leaving him.
Friday 15th August – More post, phone calls, ‘catch ups,’ a couple of loads of washing and a night in my own bed, which isn’t right without Dennis there, and back we come, I’ve missed him. When we arrived the physio had been and left him with his right arm stretched, on a pillow, across a bed table. He was very uncomfortable with shoulder, neck and head pain, it is so hard seeing him so helpless but it is necessary to keep the shoulder muscles stretched as he does tend to shrug his shoulders which adds to the tension.. We, once again, became his voice and addressed his comfort and pain relief, we try and do it in the nicest possible way without annoying the nursing staff. It took Dennis about two hours to get comfortable and free of pain. It definitely helps when his hair is stroked and soothed. He has stayed on the same ventilation settings and eventually slept. All too soon, it was time for us to leave him again, it seemed a shame to wake him to tell him we were going but I wouldn’t like to disappear without saying goodnight X.
Saturday 16th August – When we arrived this morning the physio had already been, he was sore & in pain. For some reason they didn’t come back this afternoon so I removed the calf pumps and massaged his feet &legs until the indentations subsided, I replaced them in a different position. Dennis remains on the same ventilation settings and is managing well.
We asked for additional pain relief on Dennis’s behalf and again it took a while for him to get comfortable. All too soon it was lunch time again but by now he was resting and had a nice sleep over the rest period.
We had already realised that two of the five patients’ in the unit were critically ill but when we returned the sister came to us and warned that their time would be soon. It was a depressing afternoon. I had taken in a light fantasy DVD for Dennis to watch, he slept through some of it but it made the afternoon a bit more bearable for us.
Sunday 17th August – The good physio was back today and has given Dennis two good workouts! His chest secretions are so much less which is really good news. He does however need a good exercise programme to keep his shoulders and arm muscles supple. Dennis was quite tired so we listened to some music of Donne Warwick and then some classical to sooth him into a nice lunchtime sleep.
Colin & I went for a nice Sunday Roast Lunch, he will return home later this afternoon and it will save me cooking later, it is too expensive to eat out every day. Dennis was rested, the physio had been, and seemed relatively pain free. We have bought him a James Bond Trilogy DVD set and he chose to watch ‘The Man with the Golden Gun’ which we sat and watched together.
Dennis has been indicating to us for the last four days that he has been very thirsty. Although we constantly refresh his mouth with sponges, we understand that he also feels dehydrated. We constantly mention this to the Drs but they say none of his readings indicate this. Today he seemed additionally distressed by this and Colin mentioned it again to the Doctor on duty, he advised that he would ask a spinal doctor to discuss it with us, Where did ‘while you are in ICU you are in our care’ go?! Anyway a spinal Dr eventually came, we talked to her on Dennis’s behalf, and low and behold he was prescribed 500mls of fluid! I am sure this will make him much more comfortable.
Monday 18th August – A momentous day! Seven weeks to the day of Dennis’s accident and he has been transferred from Intensive Care onto the Acute Spinal Unit at Stoke Mandeville. Three and a half weeks in St.George’s Intensive Care and three and a half weeks in Stoke Mandeville’s Intensive Care, Dennis has come a long way.
Dennis’s consultant, who happens to be one of the top ones, returned from leave today, and came to see us this morning. He was very pleasant and approachable. He asked how we all were and then had a chat with the ICU Dr on duty. He came back and told us it had been agreed that Dennis’s transfer would take place today! Preparations were put in place and all the relevant paper work.
Helen had returned with a pair of hairdressing scissors and Dennis indicated that he wanted his hair cut, she usually does it for him anyway. It was quite difficult to get right round his head as he was lying down but Helen evened up the front of his hair to the back of his previously shaved head. We then gave him a hair wash in a microwavable shampoo shower type cap. He looked very smart.
The transfer did not start until about 5.30. It takes a while to disconnect all of Dennis’s mains powered monitoring equipment to battery back up, portable monitoring equipment along with all the other paraphernalia. It was not far, down a few corridors from ICU to St. Andrews, the acute spinal unit. Here again, he needed to be transferred back onto their equipment. Manoeuvring down the corridors with the twists, turns & bumps does wonders for loosing chest secretions!
By this time Dennis was quite anxious, new faces, new ways, and new routines. We met his named nurse that admitted him and were able to pass on some of his likes and ways. We stayed with Dennis until 10.15 p.m. (visiting is until 10.30!) We wanted to make sure he was comfortable. By the time we got back to our room, we were shattered; we had a quick snack and bed.
Tuesday 19th August – Dennis was pleased to see us this morning. It was impossible for him to tell us how his night had been. We had been concerned that there was no longer anyone watching him constantly at the end of this bed. We had not slept very well.
Dennis’s antibiotic course had finished on Saturday. His temperature was rising yesterday. Today, when we returned after lunch, it was 39.9. (nearly 104) He was really hot; I think we could have fried an egg on him! We immediately got to work with the cold compresses, we got his outer temperature down but he was still reading 39.4. By the time we left it was down to 38.5. A high temperature always makes you feel unwell.
Opposite Dennis in the ward is a gentleman whose wife is brought to visit during the day. They are both in wheelchairs and have physical disabilities and speech impairments. The wife is the eyes, ears & voice of all the patients on the unit I think! We are glad her husband is in the bed opposite Dennis! We are definitely seeing the change in the staff to patient ratio from ICU.
We left Dennis around 7 pm to have our dinner and returned about 8.30 to settle him for bed. He had a lot of problems getting comfortable and in the end he was given three different pain killers, he should sleep well tonight! It is going to take them a while to get to know his ways.
Wednesday 20th August – I telephoned this morning to be told Dennis had an unsettled night. That did not make us feel very good. When we got to the hospital Dennis was having a wash. We were told they were moving him to a single side room as he had diarrhoea. While we sat with him his named nurse came to us and said she had bad news. Our hearts missed a beat! She told us that she had just received the results of the weekly swabs that were taken by ICU on Monday and that they had returned positive. Dennis had contracted MRSA! A nice leaving present from Intensive Care. I am not sure how this could have happened as all the nursing staff were so careful. Each bed had its own colour coded plastic aprons for each patient and the nurses changed these after each procedure. I do wonder sometimes about the Doctors as they move from patient to patient, not always touching them but picking up the patients file, and moving between ICU and the operating theatres and not noticeably cleansing their hands between patients. All ICU staff wear ‘scrubs.’ I suppose we will never know how he caught it, let’s just hope they can contain it and treat it successfully. Apparently the current terminology and form of treatment is ‘suppression.’ As we all carry it on our bodies it just manifests itself when our immune system is low.
Although Dennis’s temperature continues to be high, he seems OK in himself. He moved to the side room this afternoon which is light, bright and airy. It is also right next to the nurse’s station for the four bedded unit he was in before.
Helen returned home this afternoon to collect and sign the contract for her flat. She hopes it will all go through on 1st September. It is very exciting. We are very pleased for her. Dennis indicates that he does not want her to go, which is only natural, but I know he is really happy for her and proud, as we both are. He was going to do her re-wiring for her, so Jim, we need you! She has done well and I know she will make it into a lovely home, she can’t wait. She will only be about 7 minutes away.
Thursday 21st August – Dennis really does miss his one-to-one nurse, and so do we! The nurses are all really nice but with a unit of 20 beds, currently with 18 occupied, and on average 8 staff, with most of the patients needing the assistance of at least two carers at a time, things get delayed and sometimes forgotten. It was not long after we arrived this morning that the senior physio came to put Dennis through his exercise programme, they really work his arms and shoulders to maximise movement and maintain range as well as moving his legs and prevent DVT and check his chest is clear. Whilst he was with us the Consultant and a team of Doctors did their rounds. He asked the physio how Dennis was progressing. We had already said how desperate Dennis was and how we felt it would help his moral, to be able to communicate with us, this and his progression with the new ventilator enabled the Consultant to give the go ahead for Dennis’s tracheotomy to be changed from one that has a ‘balloon cuff’ surrounding it, which stops air, that is pumped into it, via the ventilator, passing the voice box and into the mouth, to one without a cuff. This will be another milestone in Dennis’s recuperation; we all know how he loves to talk!
The Respiratory Technician was soon at Dennis’s bedside explaining the procedure and saying that unfortunately it would be painful and sore for a few days. Dennis was soon able to ‘growl’ words at us and I am sure in a few days this will become clearer. During the afternoon Dennis’s temperature started to rise again. I think we were lucky the Dr did his rounds while his temperature was lower as he may not have agreed this intervention. This could however have been his reaction to the tracheotomy change as we are told that it is quite usual for the temperature for a person with a spinal injury to fluctuate considerably as this is one of the only ways for the body to acknowledge pain or discomfort.
Dennis did not take to the new tracheotomy very well, we were surprised as this was such a positive way forward to him speaking and being able to eat and drink, after a swallowing test. Dennis’s throat was sore from the change over and he now had to adjust to air coming out of his mouth again, something we all take for granted, rather than being in a closed circuit between his lungs and the ventilator for the last 7 ½ weeks. Dennis became very panicky and tried to fight the new breathing pattern. However much we reassured him his oxygen levels and all his stats were fine, he constantly said he could not breath. We asked the nurse and the technician to check him but even though he reiterated his well being he persistently requested a Dr. When we asked him what he wanted to say to them, he indicated that he wanted the old style tracheotomy back in! We told him this would be such a step backwards and would only be delaying the transition. The Dr came and made a deal with him, if he wanted, she would carry out a deep artery blood test, called a ‘stabbing’ and which he knows is very painful, and if it showed his blood gasses were low, she would request the change back. Otherwise, we would stick with it and see. He agreed to this, however when the results came back that everything was fine, he was still not happy. This is so unlike Dennis, he must have been very uncomfortable. We desperately wanted him to sleep whilst we were with him as we were interpreting that he felt so anxious that he would not be able to breathe whilst asleep. He fought sleep for 9 hours, even though he had been given pin relief, relaxants and a sleeping pill. In the end we could stay no longer. It was 10.30 p.m. the staff assured us they would keep a close eye on him and if he did not sleep soon, they would give him something else to aid sleep. He was getting a lot of phlegm in his mouth which is good in a way as it shows he can bring it up, something else we all take for granted. We knew the staff would not be doing this for as regularly as we were. Dennis was exhausted. We rang an hour later and we were told he was sleeping. We are never quite sure when we ring if we are just being told what they think we want to hear so we will get some rest! We had promised Dennis we would be back early in the morning.
Friday 22nd August – We were at the hospital by 9 o’clock. Dennis was snoozing, I wouldn’t have said sleeping. He was reassured by our presence. He was very hot and anxious. His mouth was dry and congested. We soon made him more comfortable. Once he knew we were there, he slept, he appeared exhausted from battling the ventilator for so long the day before.
Dennis continues to have an upset tummy which, they feel, is due to the constant antibiotics he is prescribed for one thing or another. All the time he is artificially ventilated or has intravenous devices in him, he is prone to infections. Dennis has also been moved onto a different bed that rotates him from left to right and flat and tilts up and down. This gives his body pressure relief and also minimises the need for at least 3 staff to ‘log roll’ him other than when providing personal care.
He slept for the whole day! The nursing staff kept asking how responsive he was. We told them he acknowledged our presence with a nod and a peek out a slightly opened eye, and drifted back to sleep. I think battling that ventilator has taken it’s toll.
Saturday 23rd August – Dennis was a little more awake this morning but rather disassociated with us all. How boring must it be for him? We went to do some food shopping at lunch time then back to our accommodation. We might not be actually doing much but both of us feel pretty exhausted. I left Helen to sleep and returned to the hospital.
Dennis needed the additional personal touches of having his cooling clothes on his body refreshed and mouth cleaned. He had rather a low afternoon, speaking in his low growl, as to how useless he felt and what was the point. Have any of you tried lying on your back, with your hands by your side, not being able to move your legs or arms, reliant on others to do everything for you, but your mind ticking away, not much fun, not only for a little while, but for weeks! However, here for once we are allowed to look forward. We still await the Consultants go ahead for him to sit up. We are told they would review the lower spinal repair again in 8 - 12 weeks. 8 weeks will be on Monday. We know from the 2 days he sat up at St. George’s he appeared so much better, even though it was straight after his spinal repair (we hope however this short period of elevation has not caused any permanent damage.)
By the time Helen woke it was early evening. We decided she would stay and make dinner and we would both return for the evening.
Iain is playing his first game for Richmond Rugby Club, having transferred from Reading on his impending move to their flat in Wimbledon; they should complete next Monday 1st September, all very exciting. He bought Helen for Christmas a day in an Aston Martin DB9 which she had previously booked for tomorrow at a Leicester race rack. Iain will drive here after his match in Blackheath and they will travel to Leicester tomorrow. Dennis has indicated he wants her to be careful! Iain arrived about 9 p.m. and his team had won 38 – 24, a good start to the season. We waited for Dennis to receive his evening medication and we settled him for the night. He admits he is more comfortable with the tracheotomy and ventilator now, he is breathing in perfect timing with it now, he is doing so well, although small steps.
As I said before, everybody is so positive, once off the ventilator during the day, he will be placed back on it at night for a while to assist and rest his lungs, they will then check his swallowing, not so easy when you are lying down, then hopefully introduce drinks & food. He will then be able to get rid of that annoying nasal tube. They are also talking about giving him sling supports to enable him to exercise his biceps, he already has a right arm brace to support his wrist and hand in a moveable position. His left hand has the internal line for the intravenous drugs so this one will be made later. If these muscles respond to the physio like it is hoped, they are talking of him being able to eat, manoeuvre a manual wheelchair and even drive an adapted car! This is of course going to take a lot of effort on Dennis’s behalf, let’s hope things go well for him.
Sunday 24th August – I arrived early at the hospital again, leaving Helen & Iain to have a lie in to be rested for the driving challenge ahead! Dennis was asleep; he was in the same position as we had left him last night, except that he has been tilted at a different angle. It is nice to see him comfortable and relaxed. I went off to take a phone call and when I came back he was having a wash, then he went to sleep again! I sat with him until lunch time, he is acknowledging my presence but back he goes to sleep, I feel like getting in with him!
Helen and Iain returned later that afternoon following her exhilarating experience on the race track. She loved it, getting up to 140 miles an hour, overtaking several men in Lamborghini’s, Porches and other high performance cars. She has always been a good driver. What upset Helen was that she knows Dennis would have loved it and she would have definitely bought him a ‘treat day.’ The race course was on an old aerodrome so there were loads of planes he would have loved to view as well. When she told him briefly about the day, you could see he was disappointed as well to have missed it.
Bank Holiday Monday 25th August – Dennis seems to be relaxed and settled as he adapts to the new unit. He is more awake today but still low in mood, he acknowledged us more but has little interest in things. He appears quite comfortable and is not complaining of the head pain he was in ICU. He has been put on a medication for nerve ending pain relief so hopefully this is helping.
We went for a nice lunch before Iain returned to London. We had seen an advertisement for a privately owned furniture company in Aylesbury. They had searched all the usual furniture outlets and stores and hadn’t been able to find what they want for the flat. Here they found just what they had been looking for. We were away from Dennis for a little longer than we had expected and he had been wondering where we were, we had hoped Dennis would have been sleeping. When we talk about the flat, Dennis appears to get upset again. It is difficult for us sometimes, we cannot shield him from everything that causes him anxiety, obviously we do our best not to shove these things in his face but at some point he has to face reality. We will both miss Helen being at home, she is such a pleasure to have around and her life has to carry on. I know she will as supportive as ever, we are very lucky with both our children.
Tuesday 26th August – The Doctors did their review rounds today, which are usually on a Monday morning. It was decided that the intravenous line on his left hand be changed to his right which means he can then have a splint made for his left hand to maintain his wrist and fingers in the most advantageous position.
Dennis also had a chest X-ray which has shown he has fluid in his chest cavity which could be a reason for his raised temperature. This will be reviewed again next week.
Wednesday 27th August – The respiratory technician is on holiday this week and there is only one of him! So there has been no progress with Dennis breathing on his own, without the help of the ventilator.
Whilst walking through the hospital we came across the Hydro Therapy Pool, It was closed but we understand Dennis will have a block of sessions as part of his therapy, I am sure he will enjoy this.
Thursday 28th August – Dennis had his first taste of food and drink through a straw for 8 ½ weeks! Another momentous day! only very small amounts but another step in the right direction. This will be closely monitored to check calorie intake before the nasal feed tube can be removed.
Helen & I returned home tonight, again Dennis did not want us to leave but he realised we needed to. It is always difficult to leave him.
Friday 29th August – After a visit to the Drs, I have been given another certificate for a month to be able to support Dennis. Colin & I returned, leaving Helen to sort out things like Gas & Electricity suppliers for the flat, plus some of the other things that go on in our every day lives.
Dennis had been asking for us. The nurses had offered him ice cream and yoghurt but we had told him we would.bring him homemade soup, Helen had made this for him last night. This he enjoyed along with a strawberry mouse later. Colin has now been able to log me on to the hospitals patients internet in their café, it is overloaded and very slow but should be helpful, I hope he will be able to sort out the wireless access for me over the weekend.
The patient / relatives café is called ‘Jimmy’s after Jimmy Saville who has raised a lot of money for the spinal unit to be rebuilt 25 years ago.
Saturday 30th August – Dennis had ready brek and hot chocolate for breakfast and some more soup for lunch and some fresh raspberries and strawberry mouse for supper. He is finding the milky soft foods cause him extra secretions. We sat and watched an afternoon film together; we have bought a twin adaptor for the earphone socket for the overhead TV so we can now have a pair each! While Colin sat and worked on his laptop. It’s so hot and muggy today, the unit is always hot as the air does just not seem to circulate, no wonder Dennis has a temperature, I think we all have. Colin cooked a nice meal for us both as has Helen for me every night. I have taught them well. I returned to be with Dennis until lights out At 10.30 p.m.
Sunday 31st August – After the beautiful day yesterday, today is wet and miserable, however much cooler for Dennis. I was there to give Dennis his breakfast. When they came to wash him, which was to be followed by the physio visit, I went back to our room where Colin was still working. We went to get a bit of shopping and also had a nice Sunday Lunch. Dennis was awake for most of the afternoon and we watched another film together, I never usually sit through a whole film, I must say it is not the most comfortable position for me as I have to crick my neck to see it at the same angle Dennis does who is lying down.
Monday 1st September – Monday morning is re-assessment morning. As I thought, the respiratory technician was back from holiday and we were told Dennis would start to be weaned from the ventilator for 10 minutes on the next two days, then 20 and so on. They don’t think he will have much trouble doing this. They also want us to encourage him to eat more which as I said is difficult whilst lying down. He still attempts small amounts of food that I try and tempt him with but, at the moment, it would not be enough to sustain him.
A family councillor dropped by to see me, all part of the support service offered by the spinal unit. We had quite a long chat and I think we would all agree it is always a good idea to talk your feelings through, after all ‘a problem shared is a problem halved!’ However, it’s also getting someone you are happy to discuss matters with.
We were also told there were some concerns for a pocket of fluid sitting outside the right lung, a scan would be arranged to review this.
After Dennis’s period of breathing on his own, he was shattered. He slept from 1 pm until 9. He would rouse when spoken to; respond to any question and drift back to sleep. I knew, as soon as I suggested I could go home and get an early night, he woke himself up! Of course I couldn’t leave him now.
Tuesday 2nd September – Today the physio’s brought in a gantry from which are suspended slings which Dennis’s arms are placed and he can move and exercise them at his own pace. We told him to imagine a cool refreshing pint of beer in his hand, this got his arm moving! It was lovely to see him doing something for himself, even though he was assisted and is still lying down.
We were told during the afternoon that he would be having a CT scan. All his tubes, drips & machinery were diverted or switched to battery back up and off he went. They located the fluid but wanted him on his side on a narrow table in the scanner to be able to insert a drain in the affected area. This was not possible. I hope this scan may also identify the stability of the thoracic spinal repair. We are awaiting the written report and how this concern will be re-addressed..
Despite an afternoon nap, Dennis was awake this evening, his character is returning, it will be so nice when he can speak more.
Wednesday 3rd September – When Dennis is awake he is very aware and we challenge him with questions that we feel he will be able to answer to make him feel part of life again. He still, however tries to stop us talking about certain things, but as I said, I feel part of his recuperation is to face everyday scenarios and what else is going on around him and in other peoples lives. I think this will help him when he starts to see other people outside his environment. However, as he is still unable to communicate as he would like, I think at the moment, this would going to add to his frustration.
This morning bloods were taken. The results of these will determine what action is to be taken with the fluid surrounding the lungs.
Lloyd Grosman is the catering advisor and today he had chicken chasseur, which was very tasty, Dennis managed to eat half of it. It is nice to see him attempt ‘proper food’ rather than liquidised.
Thursday 4th September – We asked the respiratory technician today about his speech. He explained that to speak through the tracheotomy effectively, he needs to say two or three words as he breaths out with the ventilator. As we know, Dennis loves to a talk, and at the moment, he tries to talk as he normally would so there is a great gush of vocabulary that is very difficult for us to interpret which is frustrating for him and us, especially when we have to guess what subject he may be trying to relay to us!
The results of yesterdays bloods were received and they show Dennis still has an infection. Once again it is felt it is due to the fluid surrounding the lungs. His temperature is up again to 39. He will be started on a new course of antibiotics and his in dwelling line was re-sighted to the opposite forearm, this I feel, may affect the positioning of the elbow and wrist slings which mobilise his arms, we will have to see.
Dennis appeared really fed up today. We interpreted that he only wanted to eat if he was sitting up, also at a table. We may have got it completely wrong but he refused all offers of supper. We hope he will not have to wait too long for this.
I am sorry the blog seems to be added in ‘chunks’ at the moment, this is because I am at the hospital by 8.30 in the morning and do not leave until 10.30 at night, sometimes with only a short break for lunch and by the time I get in at night all I want is my bed, before the next day starts. This hospital visiting is exhausting stuff!. At the moment, if Dennis has a sleepy day, I try and pop back to our room and update my reports. Thanks again for your interest and support. Now Dennis is awake and showing more interest, I am reading him your cards again which is showing him the love, support and best wishes you are all sending him. If any of you feel like sending him cards or letters of encouragement with amusing antidotes of your escapades together, I am sure now is a good time as sometimes he gets a bit despondent (as is to be expected). The hospital address is: St. Andrews Ward, Stoke Mandeville Hospital, Mandeville Road, Aylesbury, Buckinghamshire, HP21 8AL
Friday 5th September – Dennis is still rather fed up trying to eat and drink only slightly raised from a lying down position. I don’t know if you have ever tried it but you naturally feel you are going to choke and always sit up. Dennis has not only had to contend with this but being encouraged to increase his fluid and nutritional intake as well. He appears to be developing a reaction, in the form of a rash, to the new antibiotics, this they are treating with an antihistamine, here we go again, treat one thing and then end up treating something else which is a spin off of the first thing!
A friend of ours came to send the day with us today which was really nice although Dennis slept for most of the day, it could be the new antibiotic. I’ve asked him to be better company next time someone comes!
Saturday 6th September – Colin & Aneta have changed places with us for the weekend, they are with Dennis whilst I am at home with Charlie and helping Helen at the flat, I am on oven cleaning duty and wallpapering one wall in the bedroom. Dennis would have so loved being part of this with Helen; he would have imparted his usual words of wisdom and practical skills. We are so proud of her to have worked to buy this flat, even though she says she will never have a life again now she has a mortgage hanging round her neck! There is a lot of cleaning to do! They will do what they can before the bed and sofa are delivered in a couple of weeks time and then move in. Iain and she will enjoy transforming it into a home with their mark on it and it is so nice that they will still be so close by. We are lucky to have such supportive children and their partners.
Sunday 7th September – Dennis was really pleased to see Aneta, who he has not seen for a while due to the cost of staying in appropriate accommodation (children are not allowed in our accommodation) and the logistics of spending time with Dennis and caring for Charlie. It was nice they had a weekend away together and very therapeutic for me to spend some time with Charlie. I was told, ‘I thought you were supposed to be having a rest!’ We were exhausted when we got back to Aylesbury but it was satisfying to see a gleaming oven, a beautiful papered wall and spend quality time with our grandson, pure tonic! My nieces provided entertainment for Charlie at the flat and to keep him out the oven and the paint pot while my sister-in-law provided fantastic and very tasty culinary delights on both days, it was lovely to see them and very kind of them, this also turned into a mini flat warming. I am sure there will be several more!
Monday 8th September – We were bright and early at the hospital today to catch the Consultants on their Monday morning round only to find they were on a conference in South Africa! However, plans of action had been discussed with Registrars and subject to blood results; they were looking at allowing Dennis to sit up after 10 weeks on his back. The OK was given late afternoon but apparently beds and specialist mattresses are on hire, rather than purchased by the hospital and this would not arrive until sometime tomorrow. We’ve waited this long, we can wait another night.
Tuesday 9th September – This morning I was with Dennis by 8.30, I have had some restless nights with really weird dreams. I was surprised to see his nasal feed tube out. This apparently fell out in the night; I had thought the elastoplast holding it on his nose was loosing its ‘stickiness. Now what he ate and drank would be even closer monitored otherwise they would have to put one back in and we don’t want that. He started with half a cup of fresh orange and Mango juice and I then made some scrambled egg with fingers of toast which he enjoyed, followed by a cup of tea. The Doctors are still deciding whether to continue weaning him from the ventilator as he is experiencing distress whilst breathing on his own which they feel may be due to the fluid in the lung cavity. They hope that when he sits up this will sink to the bottom of the lung making it easier to insert a drain. We went to lunch and when we returned he was sitting up in his new bed. This is another momentous day! It is so nice for him to look around and see the notice board of cards and good wishes for his recovery.
Wednesday 10th September, Our 31st Wedding Anniversary - Dennis had asked Helen to buy me a card and some red roses and I had bought him a lovely double stemmed orchid. We also had several cards to open. Dennis had had a good night on his new bed and stayed awake for the whole day. I cooked him two freshly cooked chipolatas to have with his scrambled egg this morning which was washed down with fresh orange. All the staff were so kind and wished us happy Anniversary. Helen & I went out at lunch time and bought all the things he likes to eat, we had smoked salmon, asparagus, prawn cocktail, thinly sliced roast beef & ham, strawberry’s and two whiskey truffles (which the Doctor said he could have) and a glass of weak bucks fizz! It was a different way to spend our anniversary but as I said in my card to him, ‘next year I am sure we will look back on this and see how far we have come.’
Thursday 11th September – Dennis was sleeping this morning when I arrived but when I spoke to him he had a big grin on his face! No wonder after all he had to eat yesterday! He had been turned to sleep ½ on his side to relieve pressure on his buttocks. He looked very comfortable. I caught up on some phone calls and by the time he had had his morning wash, it was lunch time. (I am now back at my room updating this so I had better email it to Colin for you all to read – more soon I hope!)
Friday 12th September – Each Day Dennis gets stronger, more alert and aware. He is enjoying sitting up and it is making eating so much easier. I am still ‘tempting’ him with tasty food as his taste buds have not been stimulated for a while and it takes time for them to revive. Its also not so easy to swallow with a alien plastic tube down your trachea.
Saturday 13th September – Colin was due to come up this weekend but both he and Charlie have colds and it is not recommended by the ward to visit if you are unwell. Weekends are more relaxed on the ward as the Consultants only visit if there is an emergency and there is only a skeleton staff of physio’s and OT’s. It is also a good time to have a shower. This is done on a sort of plastic rimmed bed and Dennis has been asking for a shower since being in Intensive Care. He was all set to have one today and then a Dr came along and said his urine output was not adequate and he was to have a new line put in for intravenous fluids. He was very disappointed. Maybe next week. Dennis loves his showers, again, a daily function we all take for granted.
Sunday 14th September – Today my school friend came to visit. She had seen Dennis and supported me during the very difficult times in Intensive Care at St. Georges, but had been unable to visit since. She was amazed and encouraged at his progress. She took me out for a lovely lunch, it was nice.
Monday 15th September – The Consultant is back from a conference in South Africa so it should be all systems go today. He was pleased to see Dennis sitting up but felt the weaning process should be speeded up as the sooner he can be up and about the better for his self esteem and recuperation. He also felt he would benefit from more interaction with other patients. He recommended moving him from the side room into the four bedded room opposite (where he started out in the spinal unit.) This move took place during the afternoon. It is good to see him acknowledge people in a similar situation to him. We have had the benefit of being around the hospital and seeing the remarkable achievements of fellow patients. Dennis is yet to benefit from this, but once again it is different when the disability affects you. Dennis has been asking a lot of questions about the lack of feeling and movement in his legs and feet and arms and hands. I find it really hard to be blunt and negative but I know we need to be frank and honest with him. However when we speak to one professional we often get a different prognosis to another. It is very much ‘wait and see’ when the swelling, inflammation and muscle wastage, from being immobile for so long, improves.
Tuesday 16th September – We have been told that a re-assessment of Dennis sensory function and movements would take place today; it now seems it will not. However his periods of weaning are increasing. Today it will be an hour.
Wednesday 17th September – Dennis was sleepy again this morning but I think sleep is more disturbed being in a four bedded room. I had bought him nice fresh orange juice which I thought would ‘awaken the senses.’ He was also given his morning three nebulisers, the first of which is rather smelly, these do a good job loosening the chest secretions. Dennis once again asked us to use the arm supports so he could warm and loosen up his muscles after a nights sleep and ready for the physio! He had his morning wash and then lunch. He ate well. Today it was another nice beef casserole in beer, mash & peas and rice pudding and jam. He finished off with a cup of tea and 3 ginger nuts. Helen & I had an appointment at lunch time and returned to be with him for today’s 2 hour weaning session. Although Dennis was anxious about this being doubled from yesterday’s hour, once again he coped well, even though the physio came at the beginning of the period and his position in the bed was changed in the middle of it, two strenuous activities for him.
Thursday 18th September – Dennis was asleep again when I got there, he says he likes to stay asleep until I arrive so he can wake and see me there, as we would at home. It is not nice saying good night to him and then going back to a single bed. In some ways is easier for me being here with him than him not being around in our home. Today’s weaning was for 3 hours. We stayed with him until after this was over. He appears anxious to speak or eat whilst weaning, it is more anxiety than any thing else. Because of this he didn’t eat much lunch, we asked him what he fancied and after reeling off a few things he opted for meatballs. These we made for him and he really enjoyed them. Dennis is now asking about the lack of movement in his hands and appears determined to exercise these as much as is possible. It is very frustrating for him to want to move them but the instructions from the brain are not reaching there intended destination. I really hope we can keep his moral up
Friday 19th September – Dennis was washed early this morning and then 4 hours weaning started. Again he did not eat much lunch or speak much during this time. The physio waited and gave her treatment after her visit when he was back on the ventilator. I left him to have a sleep. When I returned I had made him something special to eat. Following this he said he was experiencing difficulties breathing, (not my food I hope!). Following several chest suctions to clear secretions he still felt light headed. All monitors and equipment were checked but still he did not feel quite right. They will be keeping a close eye on him tonight.
Once again I must apologise for not updating the blog so regularly. I know so many off you logon to check Dennis’s progress and it must be disheartening not to find up to date information, I’m sorry. We are all so grateful for your love and support. I just find it hard sometimes at the end of a weary day to consolidate the events; I really will try to add this on a more regular basis.
Saturday 20th September – Dennis was still anxious when I arrived this morning, he was fine but I could hear a ‘growling’ coming from his throat. He was reluctant to eat any breakfast as he appeared to feel this would add to his breathing difficulties. The nurses came to wash him and after several more suctions and although still feeling uneasy, he agreed to start his weaning period off the ventilator. Something continues to trouble him and although the Drs were pushing for 5 hours, we compromised and Dennis completed 4 ½ hours breathing on his own. After this he slept. A friend unexpectantly turned up to spend the day with us. While Dennis rested, we went for lunch. It has been a beautifully sunny day, it will be nice when Dennis can enjoy more than the four walls of the hospital ward.
Sunday 21st September – Dennis has been complaining of discomfort when swallowing and has been reluctant to eat and drink. He will take a couple of mouthfuls or sips and shake his head in distress. I have voiced this change and my concerns to the nursing staff and the Drs but they say just try and encourage him to persevere, easier said than done when you are in pain. Today Dennis weaned for 6 hours.
Monday 22nd September – Consultant rounds today, we hoped he would give Dennis the go ahead to sit out in a chair but unfortunately he wants to wait until he reviews the situation on Thursday. Dennis is disappointed. One of the things he says he wants is to eat his meals at a table. I do think there is more than this stopping him eating but with so little to look forward to and such goals to reach who can blame him for being despondent.
Tuesday 23rd September – Dennis is still only taking very small amounts of fluid and nutrition and the weaning seems to be sapping his strength. However much we tempt and encourage him to eat he says he can’t. I think he may have had a bad experience swallowing some medication when I have not been there but any scratching of the throat should heal quicker than this.
Wednesday 24th September – Today Dennis looks very weak and drawn. Due to lack of nourishment he is very low in mood. They are still continuing the aggressive weaning programme. He is now off the ventilator for 9 hours which really saps his strength. Medical staff are still concerned over his lack of speech. I still feel he is despondent due to his lack of ability to fully participate in conversations and just ‘switches off.’ He is being referred to a Speech & language specialist and ENT (ear, nose and throat) consultant. They say they need to check that no damage was done when the emergency tracheotomy was performed.
Thursday 25th September – I am getting concerned about Dennis lack of nourishment and have again voiced my concerns to the Drs. They have agreed to give Dennis some additional fluids via a drip as I have said I will be home for 3 days and do not wish to leave him and return to find him dehydrated and weak. This has at least given me some peace of mind although is not getting to the route of the problem.
Friday 26th September – This morning I had the Drs first thing. They are prepared to back me with my support of Dennis. They agree it is beneficial to his recuperation and well being. It is really nice when Dennis whispers how much he loves me and how lucky he feels he is that I am there for him. Things are not easy for any of us but I couldn’t be any other way.
Next I had a meeting with my boss, who was also really sweet and supportive. I feel really guilty as he was appointed to the post and was due to start 3 weeks after the accident happened, so he was really ‘thrown in at the deep end’ but he seems to have things ticking over nicely. I enjoy my job and look forward to the day when Dennis is stable enough for me to return. I know Dennis may not agree, but however much I want to be there for him, I do not feel it would be good for either of us for me to be there 24/7, we shall have to wait and see how things go.
Next I had a visit from an Occupational Therapist from Merton Council. This was to look at access to the house and assess the adaptations required. Layout and door widths are not ideal so there will be quite a few changes to be negotiated with input from the experts, before we are able to bring Dennis home.
Two close friends visited Dennis for the day to ‘keep an eye on him’ for which I am most grateful. Today was also Charlie’s 2nd Birthday. Colin & Aneta, and a few friends, went him to London Aquarium and then to ours for tea, cake and presents!
Saturday 27th September – Colin, Aneta & Charlie are on ‘Dennis duty’ this weekend. I have been trying to sort some things out at home, more paperwork and catch up with a few friends and neighbours. I also had the compulsory, but enjoyable, visit to IKEA with Helen! As I’ve said before, it is nice to be in your own home but so strange not to have Dennis there, nothing seems complete.
Sunday 28th September – After another busy day at home, we returned to Aylesbury before ‘lights out.’ Dennis was pleased we were back but Colin & Aneta had been very attentive and Dennis had been delighted to see Charlie.
Dennis had completed 12 hours weaning on his own today, an achievement indeed. It does not seem that long ago that he was so reliant on the ventilator that if it was taken off for just a few seconds for a connection or nebuliser to be changed, that he would be gasping for breath. He has come so far and done so well, that’s my boy!
Monday 29th September – When the Consultant did his rounds this morning, much to Dennis’s delight, he gave the go ahead for Dennis to be got up and go in a wheelchair!
Unfortunately, although this had been put on hold from last week, the order for his chair had not gone ahead, so today instead of it being readily available, they only just applied for one which was suitable for Dennis’s requirements, this was rather frustrating. These, like the beds & mattresses all seem to be on loan from franchises.
I spoke to the respiratory technician regarding Dennis’s throat problems and he said ‘I’m not surprised, I am just on my way to change Dennis’s tracheotomy, it is overdue and he may well get discomfort swallowing as a build up of residue can form around the tube.’ No one told me this needs to be change at 4 weekly intervals or checked this when we mentioned the discomfort, I will definitely be keeping an eye on this in the future.
Tuesday 30th September – Dennis again hoped for the arrival of the wheelchair. I did explain to him that it may be a traumatic experience. First of all he would need to be dressed, which meant more pulling around, then hoisted before sitting in the chair. Due to lying down for so long, his blood pressure would fall and he would probably feel faint. Medication would be given to him for this.
Wednesday 1st October – The Dentist came today to check Dennis’s teeth. Following the accident, he has been complaining of a rough tooth on his tongue but when they were checked we were told they were in very good condition. He had bitten through his tongue at the time of the accident and we thought had cracked & dislodged a crown. They have said, when he is in his chair to go to the clinic and have an x-ray and proper examination. Dennis is not also able to open his mouth very far so they will pursue the referral to the facial surgeon to check his fractured cheek bone. I arrived earlier this morning to give him his breakfast of Readybrek, teeth clean and shave before his 9am appointment.
We both hoped the wheelchair would materialise today. As the day progressed there was no sign and Dennis was getting more agitated, asking me to speak with the Consultant and see if he could make it happen. There was no consoling him. I later spoke with the physio and explained of Dennis’s frustration and distress and that he was a man to undertake a job as soon as it needed doing. He had such little to look forward to and this was obviously such a big thing for him. I was later told the chair had arrived, not the one he really wanted for Dennis, but a temporary solution. One of the ladies on the unit had taken an unexpected turn for the worse and tasks had had to be prioritised. Unfortunately it would not be happening again today.
Thursday 2nd October – This morning Dennis had another good breakfast of Readybrek & honey. As soon as I set eyes on the chief physio I ‘accosted’ him to see if a pressure cushion had been located. It had and I was assured Dennis would be up in chair today. They would be there at 2 o’clock to assist him! I had hoped that when they washed him this morning they would dress him at the same time. Unfortunately they didn’t and said they would do this at 1pm. This eventually happened at 1.50. The physio then arrived at 2 and Dennis wasn’t ready. He said he would see another patient and come back. This was then at 2.50. Dennis had been very quiet and I knew he was desperately hoping it would still go ahead. We had been told Dennis would need some medication to keep his blood pressure up, I asked the physio when this would be given. He said about 15 minutes to take effect, another delay. Eventually it was ‘all systems go’ and Dennis was hoisted into the chair, not an experience he had been looking forward to but coped very well. Once in the chair and made comfortable he started to turn very pale and was tipped backwards to help blood flow to the brain. After the foot plates and cushion we adjusted for him he was given a guided tour around the unit. I think he was glad to get back to bed. He just settled down for a snooze when the Occupational Therapist turned up with a ‘lip sensitive’ control for the TV, we all know how men like to be in command of the TV controller so this brought a smile to his face.
Friday 3rd October - Dennis was complaining of a really sore throat. The Drs checked him over and could find no reason for concern. Although this is good news it does not help the situation. One of the ladies on the unit is still unwell and unfortunately with only three staff for 11 patients on Dennis’s part of the unit, he was unable to be got up this afternoon. This did not help Dennis’s moral. We tried to make the best of a bad job and when the nurses came to ask him if he wants a shower tomorrow, he said ‘I would rather get up!’ It is nice to see him with this interest and determination to progress.
Saturday 4th October – Today we were told they would wash & dress Dennis and sit him up before lunch. This pleased him. However, with the best will in the world, things do not always go according to plan. By 12.30 Dennis still had not been washed and lunch was at midday! He was getting a bit anxious as he felt it may not happen again and was also quite concerned that he had not felt well when seated. Again he was reassured this was normal. By 1o’clock he was ready to get in his chair. Even though he had had the blood pressure maintaining medication he still felt light headed and faint. He was tipped in the chair again but after 20 minutes it was felt best that he should go back to bed and they said they would try again in the afternoon. Unfortunately, again other things took precedence and this did not happen. Hopefully we will start early again tomorrow and his blood pressure will maintain normal longer.
Sorry – a late entry again! I think I will give it a try to consolidate a weeks updates at a time as although things happen this end, time restraints stop me writing the blog entries so often, we will see how it goes, I feel bad when people log on and find nothing new.
Monday 5th October – Sunday 12th October – Monday morning and Consultant rounds. He is a real ‘old school’ doctor that receives a lot of respect. He walks round the ward with 3 or 4 junior doctors in tow, the sister of the ward (who is very good) and the chief physio, asking for updates on each patient (there are three top consultants.) They busily look up medical records and the weeks ‘plan of action’ is set. We like him. Dennis’s targets were to get him sitting up more so he could interact and see life beyond the ward. They also decided to introduce half the blood pressure medication he had been on before the accident (which was a minimal dose anyway.) When they came to sit Dennis in his chair he only lasted an hour and kept telling us he felt pretty awful. He does go pretty pale & clammy but as we are constantly told this is to be expected, so we try to encourage him to persevere.
The next day a chest x-ray had been requested, to check on the fluid on the bottom of his left lung. We were initially told this would be at 2pm, so they would get him up afterwards. Then we were told it was at 3. When we got down there, he was not seen until 4pm. It was now too late to be got up. Very frustrating again. Although Dennis knows he does not feel well, he is desperately trying to conquer these feelings.
Wednesday we were determined to go for it. But when he was put in his chair, he immediately felt very strange. His blood pressure was checked and it was decided he should go back to bed after only 20 minutes. The medication Dennis has been given to thin his blood (that was the cause of all his previous internal bleeding problems and was changed to an alternative injection in his tummy,) has now being changed to a tablet three times a day.
Before being sat up, Dennis is given a medication to keep his blood pressure up. Thursday we managed to keep Dennis out of bed for an hour and half. The nurses were keen to push him. Once back in bed he felt exhausted. However much they told us this was normal it was very distressing for Dennis and for me to watch, trying to reassure him but having sympathy for his anguish at the same time.
I have been questioning how the body reacts to a medication to lower the blood pressure and then a few hours later, given one to raise it. The Doctors do not seem concerned about this. However I think they are beginning to re-evaluate his reactions.
On Friday, when I sat him up for his lunch, he immediately said how unwell he felt and asked me to lower him again. When his BP was checked it was very low 68/35. Poor Dennis, he was back, flat on his back, even reclined with his head lower than his body, he was concerned he felt like this and it must be a horrible feeling realising you are not in control of your body.
Saturday & Sunday Dennis had to resort to lying almost flat, every time he was raised, his blood pressure dropped. I have been fighting off a cold, this is the last thing I want to give Dennis but with him feeling so low, it is difficult not to be there supporting him. The Doctors are reluctant to make any changes to his treatment until Monday’s Consultant rounds although they have agreed to prescribe intravenous fluids. Having to be so flat it has made eating & drinking more difficult, so here we go again, loosing strength & nourishment. Hopefully things will improve next week.
Monday 13th October – Sunday 19th October – Consultant rounds and he wanted to know why the intravenous fluids had been prescribed! I know it is not ideal but what is the poor man supposed to do when his throat is sore & swallowing is difficult and having to lye down for most of the time as well! There is not a terrific amount going in but at least it is keeping him ‘topped up!’ Besides his body must be missing his daily pint – or two! I have asked if he fancies a non-alcoholic beer (alcohol is strictly forbidden in the hospital) but he says no. His appetite & taste buds must be right up the creek as I constantly bring in small quantities of all his favourite and tempting foods but after only a few mouthfuls he shakes his head and refuses any more. At least I’m getting a very varied diet as it can’t be wasted can it!
One good thing was that Dennis’s tracheotomy tube was downsized. This was carried out by Helen! Under the watchful eye of the ventilation technician. Good old Helen, she is game for anything! Rather her than me, I am not very good with things like that!
All blood pressure regulating medication has been stopped and the consensus is just to let it get out of his system and see what happens. I wouldn’t have thought he had been given enough to make this sort of dramatic effect on his blood pressure. His readings vary from 63/47, 75/ 54, 83/45, 90/53, 95/57, 114/67,128/71,140/80, 163/94, 93/84, 97/63, all sorts of combinations.
We are continuing to sit Dennis up for short intervals, especially at meal times, but before long he is complaining of feeling sick & giddy. The consultant rounds on Thursday did not bring radical changes except to agree two units of blood as his haemoglobin levels are a little low which could contribute to the drop in blood pressure. Although this was infused Friday by Sunday he still did not feel any better
I have been fighting a cold all week, as have a lot of the staff and have been really careful to hopefully not give it to Dennis, so far so good, I really do not know how he would cope with a chest infection but I suppose we are going to have to find out sometime.
The hospital Occupational Therapist, OT, has discussed with us the local Council’s report, following a visit when I was home last month. What they are proposing is very basic adaptations and equipment provision which is what I expected but am not at all happy with. Colin and I have some ideas, which we will put to a more senior official when they make a return visit next week. Dennis & I have discussed his wishes to return home (within his current ability to communicate.) Although moving was a possibility we really feel we should not rush into anything and that we should embrace the challenges ahead with the support of our family and friends in familiar surroundings.
Last Saturday a young lad, about 17 was brought onto the unit. He had been involved in a rugby accident and a top consultant and 4 registrars were involved in his immediate treatment. This was in the form of head traction which was in the form of a metal head cage until an operation on Monday morning. By Wednesday he was sitting up in bed, by Thursday he was being shown how to use a wheelchair, by Friday he was up and walking down the ward with a 4” scar in the side of the neck. He was a very luck boy. Stoke Mandeville really does seem a Centre of Excellence. It is always nice to see a successful outcome.
Sorry – two weeks in one go, I know a lot of people log on eagerly to get news on how things are going and I feel I am letting you down when everyone is so supportive, so here goes:
Monday 20th October – Sunday 26th October – You may have all seen the news of the young Rugby player that went to Switzerland for euthanasia following a spinal injury; - he was a patient on Dennis’s ward at Stoke Mandeville. There was a lot of talk about it with the staff and patients, many knew him and said he had tried suicide several times before. It is still very sad.
Dennis was pretty despondent over the weekend. He cannot seem to see any progress being made. He has said he wants a more comfortable wheelchair and that he is fed up with taking so much medication. I’ve told him he must ‘voice’ his opinions to the Drs!
Mid morning and the usual following of professionals came round. It was agreed that a review of Dennis’s medication would take place, his tracheotomy would be downsized again! (the next step is out!) and a new, more contoured chair arrived. Not bad for a mornings work!
Now his BP seems to be on the high side, but at least this should give us some lee way for it dropping when they sit him out of bed. Still erratic though, 147/81, 148/96, 106/66, 141/83, even 177/100 at one point.
Tuesday and we hoped they would get him up but when one patients started being sick, another went to theatre and needed additional care when she returned and one staff member phoned in sick, it left staffing levels rather low to have two on hand to assist Dennis should he feel unwell. Hopefully tomorrow.
Wednesday and Dennis is got out of bed. He sat in his chair for 2 hours and then asked to be put back to bed. I think he was quite pleased with this step forward. It still exhausted him.
We continually try to tempt him with nice foods and drinks, but after a few mouthfuls he usually shakes his head and says no more. One thing he does like is macaroni cheese but made with spaghetti, this slips down a treat so I have made extra servings for him whilst I am away.
Thursday and I returned home. I have two hourly appointments tomorrow to sort out several things. One of these was another visit from the Councils Occupational Therapist which I hoped would take the process of making the adaptations to our home forward to enable him to return home. Unfortunately, once again we do not seem to be getting anywhere. It turns out the OT that came is only the ‘temporary visit team’ and not from the ‘permanent team.’ There proposals for Dennis to have ‘weekend visits home’ are totally unacceptable so we want to push forward with the permanent adaptations – more red tape. More on this as it gets finalised.
The weekend and Monday is full of doing things around the house and people to see which was nice. Home is not home without Dennis there. It is not nice being in our bed without him in it and all his possessions as constant reminders of him. I know it needs doing but it just does not seem right to just ‘take over’ when so many of his things are where he wanted them and how he left them. It can wait; I want him coming home to the house as he left it rather than everything ‘tidied up for him.’ I might change my mind on this but this is how I feel at the moment.
Monday 27th October – Sunday 2nd November - Colin is still with Dennis and I have a day at home to ‘sort things.’ I will return tomorrow as Colin had an appointment tomorrow afternoon. It has been so reassuring knowing that Dennis is in such good hands and I know Colin has enjoyed spending some ‘quality time’ with his Dad.
Dennis seemed pleased to see me back and that he had missed me. There was plenty to talk about with all that had gone on whilst I was home. Dennis was on top form, he was speaking better, eating and drinking better, but still not a lot. He had been getting up in his wheelchair each day, although still feeling quite dizzy his blood pressure is not dropping as low as it was before.
He also has appointments in the gym each day with his new physio; she is very nice, kind but firm. Dennis is still experiencing a lot of pain in his shoulders but I am sure it has a lot to do with lying in bed for so long. Now he is being moved about more and sitting up I think everything is moving in a different direction, hence the pain. They have also explained that when someone normally has an operation, like Dennis did with his spinal stabilisation, the patient would be mobilised as quickly as possible. However, due to Dennis’s poor health, this has not been possible, so in the three months since the op the 6” scar, that cut through his neck & shoulder muscles, has formed hard scar tissue which also pulls and is taut. Dennis gets a lot of neck & shoulder pain and asks for extensive massages, of course we oblige.
The beginning of the week went well, but on Thursday when I went in Dennis told me he did not feel well. When the Consultant did his rounds, which are Mon & Thurs, I relayed Dennis’s ailments to him almost being told ‘to pull himself together and that he needed to be challenged to be able to move forward.’ Dennis was quite upset by this. He says he is trying. I was also summoned outside and was firmly, but in a ‘food for thought’ way, that he felt Dennis was less ‘anxious’ when he saw him on Monday (when Colin was there) and implied that I made him worse and that it may be a good idea if I ‘left him more.’ I know his intentions may be good but I need to do this my way. I am lucky enough to be off work; I am living near the hospital to support Dennis (and provide additional care that the nurses do not have time to) and spending quality time together. What am I supposed to do if I am not with Dennis, go shopping! Of course I think about him whether I am there or not, at least when I am with him I am helping him, emotionally & practically. I do leave him for morning and afternoon periods, if possible, to organise the mountains of paperwork, only to return and find very little care has been provided. It is just staff to workload ratio, not that they don’t care.
However, that afternoon, as Dennis was saying, his temperature had risen, he was sick three times, which is not easy when you can’t move or no one is around, had diarrhoea and was generally unwell. This continued for four days, and I’m supposed to leave him! Dennis became more and more despondent and fed up at this set back. It is sometimes difficult to keep his spirits up when nothing seems to be going well for him. More drugs were administered but as Dennis’s immune system seems so low, following all the medication he has received, everything he is given seems to result in him getting a reaction to which usually results in him getting a rash and itching. Have you ever had an itch, especially in the middle of the night and not been able to scratch it, it must be torture. I think sometimes the staff need to take a step back and imagine themselves in the body of the patient.
Monday 3rd – Sunday 9th November - This Monday, at morning rounds, I got told I was ‘domineering’ Dennis thinks this quite funny and as Helen says, the Consultant could mean it in a complimentary way, but I found it quite hurtful. Knowing Dennis as I do, I am usually the one that puts forward his views. We always discuss how Dennis feels before the Consultant rounds and I always ask Dennis that, what I have said, is a correct interpretation of what he feels; it is easier for him to nod than explain himself. We have noticed that his Consultant likes to instigate any decisions and not for suggestions to be made by any other party! After last weeks remarks Dennis has said, he knows how he feels and does not like it thought he is making it up. The consensus is that the medical staff are here to push the patient but as I’ve said, it is always a tragedy when any one has an accident that leads to a spinal injury, but in Dennis’s case, this must been accentuated by being run over, resulting in all the additional internal problems he has experienced.
Dennis is on two new antibiotics following his recent health problems, two regular antibiotics were tried, the first brought him out in a rash, and the second caused a reaction for which he had to have emergency treatment. I just feel he has had such a lot of medication over these last few months his immune system is really low. The microbiology team were brought in and a new, very expensive treatment was introduced. One four times a day in tablet form and the other twice a day intravenously. After the intravenous treatment Dennis’s blood pressure rises to the degree that he needs emergency medication to lower it. It works quickly but here we are again, inducing the body to react unnaturally.
Dennis unfortunately is back in bed and feeling pretty lousy. His appetite and fluid intake is dwindling and he is getting weaker. He was however heartened when I read him the side effects of the medications. ‘That’s exactly how I feel’ he said.
We keep trying to push Dennis forward and although he knows it is for the best, his body is not always so willing. Whilst things are not progressing how we would like them too, Dennis is pretty despondent. He can see no progress at the moment. His mind is definitely back to the Dennis we all know and love, slightly disorientated by his current environment. We keep telling him it is amazing how far he has come.
On Friday, Dennis’s sister, two friends, Colin, Helen and I attended ‘Relatives Day.’ The morning was introduced by a variety of medical professionals from injury to outpatients. This was very well presented and informative, followed by a lovely lunch. In the afternoon we had a presentation on life after discharge by ex patients followed by group discussions. It was very ‘up beat’ and informative. We were all elated by the end. It was great to hear such a positive and inspirational approach to life after an injury. Dennis will go through a more intense programme when he moves down to the rehab ward.
Monday10th – Sunday16th November
There has been quite a bit of organising to do this week with Dennis’s taxicabs and I have made him be in control of this, with him giving instructions as to who to contact. It really does him good to connect with the outside world again. However he is really despondent as to how he feels. He says his mouth feels like cardboard and eating is even less appealing. We had hoped the course of antibiotics would have finished on Friday but it has been decided these will continue for another three days, this was not good news for Dennis.
I’m not sure if I have said before that when the local Council’s Occupational Therapist came to assess our home, door ways and turning angles are not adequate for a wheelchair. We feel the best way forward is to build an extension on the back of our house. This has to be approved and I now start the long process of applying, not just for the building but also for all the equipment. There are grants available but I don’t know if we will qualify, more forms to fill in to find out. I also have to produce financial information since the accident as without Dennis working and repairing the taxi’s our finances have altered. Last years accounts do not represent accurate income, now or in the future.
One of the specialist charities associated with spinal injuries is Aspire. They help with all aspects associated with adapting to life after a spinal injury. They also help with upgrading equipment provided e.g., IT aids, additional shower appliances or a more comfortable wheelchair than the one provided by the local council. Most of the finances come from fundraising and one of these events is to swim the 22 miles of the English Channel, which, depending on the size of the pool, is the equivalent of approximately 200 lengths (I think I have the correct comparisons.) A few friends of ours have already started doing this and are raising sponsorship money. On Sunday 7th December the David Lloyd Health Club in Raynes Park, where Dennis was a member, have agreed to make section off lanes to enable a group swim to take place. With free entrance to all who wish to participate. Anybody interested in swimming, or sponsoring, please let us know. We have discussed funding opportunities with Aspire and we are looking into registering sponsorship money especially for Dennis as several people have said, they don’t mind giving but would like to be assured Dennis would benefit in some way. You can view their website at www.aspire.org.uk
Monday 17th – Sunday 23rd November – On Monday, in Consultant rounds, it was decided that, to move forward, Dennis would be taken off overnight ventilation and see how he coped. He has been off any daytime ventilation assistance for 12 – 14 hours for a long time now and has no problems. However, after two nights his chest secretions increased and the lower part of his left lung started to collapse, this is due to shallower breathing when asleep and the lung are not expanded sufficiently. It was immediately decided to put him back on overnight ventilation support. Dennis had breathing support overnight before the accident and it was felt it would be unlikely that he would not need this again after the accident, however he has tried this support and found difficulty accustoming himself to it, it is much harsher that the gentler support from the ventilator. It would appear that he must persevere with this form of ventilation. If we can conquer this, hopefully the removal of the tracheotomy will follow.
Dennis finished the double course of Antibiotics on Monday, hopefully now he can pick up and move forward. He has had these for 15 days and they really knock it out of him, last week he said to me, ‘I don’t know if I can take these any more’ but we agreed it was best to finish the course or he may have to go through it all again. By the end, his mouth & throat was blistered & he has found eating & swallowing really painful. He is now eating & drinking even less and getting weaker. He knows he should eat more but says he can’t. It is really hard to keep persuading a grown man. Helen has made him a ‘Countdown to Christmas’ Calendar which is on his wall. We have rented a converted barn for the family for Christmas week and we hope Dennis will be well enough to join us. However, unless he gets stronger and is able to get out of bed and tolerate a taxi journey to the accommodation near Chesham, about 20 mins away, he won’t be able to join us. We also need a few outings before this to get him used to going out.
On Monday, Dennis also said he wanted to get out of bed and sit in his chair every day. This was a great positive step forward. He mind is willing, but the body not so accommodating. Monday, he was got up and sat in his chair for 1 ½ hours. Tuesday, they were very short staffed and was not washed until 1.30 so he did not. Wednesday he was up for 2 ½ hours, he was not happy with me because almost as soon as was up he said he wanted to go back to bed. Again it is hard, we have to be cruel to be kind sometimes and unless we push Dennis we are never going to move forward. I do hope he will thank me for this in the future.
On Thursday, two friends came to visit Dennis & took me back home. Dennis is still very wary about having visitors as he wants to be able to interact more and be more sociable than he is currently able. This is understandable. He does enjoy receiving all your lovely encouraging cards and his notice board is a joy to behold. The words inside of cheer and encouragement are so uplifting and antidotes of everyday life bring some normality to our days. Thank you all for these. – No pressure, I know it is a busy time of year and people do not know what to say, but I see no one has added a message since 1st November, we are able to read these to Dennis now so please keep them coming, thank you, they lift us up as well.
On Friday a friend of ours came to be with Dennis and I have my usual action packed day, this time with the dentist thrown in. Aneta and Charlie returned from Poland on Tuesday and we were delighted to be able to look after Charlie while Aneta and Colin visited Dennis. Charlie was an absolute joy to look after and I called it my relaxation therapy. Helen and Iain moved back home for the weekend and between us we managed to entertain him and get our commitments completed.
Dennis visited the gym on Friday, rather than the physiotherapist visiting him in his room, well done to my friend for encouraging him to make the journey there.
An update on the sponsored swim. We now have enough volunteers to actually swim on the day but anybody wishing to sponsor these brave friends, please give generously. This can be achieved by going direct to his web page at www.justgiving.com/dennisporter or through the Aspire web page www.aspire.org.uk or there are sponsorship forms around. I got the distances slightly wrong! Dover to Calais is 21 miles and that converted into metres is 35405.568, divided by 50 metres, an Olympic length pool, is just over 708 lengths! Those swimming on the 7th December want to swim the cannel in relays which, due to the size of the pool, will be around 120 lengths each, good luck to them all.
Monday 24th November – Sunday 30th November – Sunday was the 31st anniversary of my Mothers death. It was the first year my brother and our families have not spent the day together. I returned to Aylesbury with two Friends. We met Colin & Aneta for lunch. They felt how well Dennis had progressed since they saw him a couple of months ago. Dennis interacted well, within his limitations, but enjoyed seeing them. It does however wear him out and on Monday he was pretty tired. When the Consultant did his rounds, I outlined our plans for Christmas. He was absolutely delighted at our proposals and said he felt it was the best thing we could have done to encourage Dennis to move forward. It was decided to hold fire on weaning him off the ventilator, which also means this will delay the removal of the tracheotomy and to concentrate on getting Dennis up, interacting and down to the gym. Although Dennis was all for this, he only managed three out of five visits, not always his fault but also due to staff shortages to get him ready in time.. However Dennis is always reluctant to move out of the security of his room. We are not sure why he is having this mental block but it is felt it might be to do with his acceptance of his disability.
This also appears to be affecting his enthusiasm to eat and drink. Dennis is lucky to have me cooking and encouraging him to drink and eat things I know he likes, even though the hospital food is not bad at all. He only takes two or three sips or spoonfuls and refuses to take any more. He says he feels sick and appears to ‘gag.’ He has had swallowing assessments and there does not appear anything medically wrong to cause this. I really do not know what else to do to help him regain the strength to enable him to move forward.
The family Christmas week in our ‘converted barn’ is looming fast and are really hopeful that Dennis will be strong enough to join us for two or three days. At this rate it seems unlikely and that would be a great shame. We can only continue to support and encourage him but he has to put in the will power and effort to achieve this goal.
Helen came up to see her Daddy on Friday, she also finds his lack of effort disheartening but I know the more we ‘nag’ him the more likely he is to ‘switch off’ we have to find the level ground to move him forward. Helen left on Saturday lunchtime as she had a back stage pass to the recording of the X Factor with guest star Britney Spears. She sat in the audience with Girls Aloud, Kate Moss and Paul Potts and had an ‘awesome’ time. She also found time to continue tiling her bathroom; she is turning her flat into a lovely home.
Monday 1st December – Sunday 7th December - Dennis is even more despondent. Although I am always there assisting and encouraging him to drink, he takes one or two sips through a straw and refuses any more. He is getting seriously near to dehydrating, but as there appears no reason for him not to drink, the Drs are reluctant to introduce another intravenous drip, however by Wednesday he was getting so close to contracting a UTI (Urinary Tract Infection) they had no option but to introduce fluids as we do not want any more set backs. I really wish Dennis would ‘pull his socks up’ and move forward. No one is saying it’s easy and cannot begin to comprehend what he is going through but as I keep telling him, there is so much love and support out there for him he should count his blessings and start appreciating how much everybody cares about him.
I must apologise for not realising your new ‘blog’ messages now appear on a second page. I printed these off and read them to him. Many of these were personal to him and some brought a tear to his eye. I really feel he needs to let go and accept what has happened. None of us are blaming him, although we feel he is blaming himself and feels very guilty he has put the family in this situation. We keep telling him, what has happened has happened, we need to move forward, not look back, we are here for him and as I say he could have suffered some other life changing illness or disease. We are grateful we still have him in our lives and want him home and to move forward together. We can do this together but we need him to want it too.
On Thursday’s Drs rounds the Consultant knew how down Dennis was. He questioned why the intravenous fluids had been given and gave Dennis an ultimatum. He had one week to eat and drink to an acceptable level otherwise a feed tube would be placed into his stomach either through an incision or through his nose. The choice was his! He did however say to me afterwards that he wanted to carry out one more test, in the form of a video swallow, to eliminate any underlying cause before taking these measures, but would definitely prefer Dennis to do it the natural way!
On Friday Helen visited Dennis along with Dennis’s niece from Australia. It was nice to see her before she returns next week and something her Mum wanted her to do. It’s unfortunate that she arrived just as Dennis had his accident and spending two days in a hospital is not the ideal way of meeting your family!
Colin came up Saturday to spend a few days with us and to lend me some support in dealing with Dennis low negative mood. I had found it very demoralising but as I said, I know it is emotions he has to go through. It has been a hard traumatic ride for us as well and I think my reserves were running low, nothing like a cuddle and moral support to raise them again!
Sunday was swim day! If you remember it was frosty all day and 17 intrepid family and friends met at the David Lloyd and swum the 35406 metres which averaged out in the end about 84 lengths each! What amazing friends! At about 4.30pm I received a phone call, which was passed between several of those that participated, saying what an invigorating experiences it had been (if you remember it was the day the frost lay thick on the ground) and how good they felt about actually doing something positive to help.
Monday 8th – Sunday 29th December – Sorry I have not written the blog for so long but a lot has happened, all good I hasten to add! but it has taken up a lot of my time and I’m shattered by the end of the day.
The Consultant had to give consent for Dennis’s leave over the Christmas period, he felt it was a brilliant idea and ‘just what the Dr ordered.’ It was suggested that as a trial before Christmas he spend a couple of days in the discharge bungalow to see how we all coped. This is built in the grounds of the hospital and prior to discharge a patient and their family can spend time together and see what it is like to be out of the hospital environment. We booked this for Monday 15th & Tuesday 16th December. We had decided Dennis would only join us for days at the barn and not stay overnight. With Colin & Helen’s support, we agreed to provide the personal care Dennis requires as we did not want to be tied to times and be waiting for carers to turn up, especially over Christmas. We have always been very ‘hands on’ with Dennis’s support on the ward (sometimes to the nurse’s annoyance I think) but being in that line of business and the children being aware of his needs we wanted to do this for him.
Helen came up on Sunday and she and I had arranged to collect Dennis from the ward at 9.30, of course he was not ready, much to his frustration. I’m sure you all know how Dennis is always ready on time and does not like to be kept waiting. We had asked Dennis what he fancied to eat, we wanted foods that had a good aroma to stimulate the taste buds. Again, those that know Dennis well, knows he loves a beef burger with onions and bacon. He did well and ate about half although still said food does not taste right. We will need to keep working on it. The days went well; he stayed up in his chair for a couple of hours and then had a rest on the bed. Colin came up on Monday afternoon and brought a Taxi as we wanted to use this ‘wheelchair accessible vehicle’ as our independent mode of transport for Christmas. However, the chair Dennis has at the moment is quite large as he is long in the body & needs a head rest and the back needs to recline and the legs raised, to increase his blood pressure when he feels dizzy and faint. We tried the chair with Colin in it and we could see no way of getting him in as the door height was not high enough. He sits on a 4” inflated pressure cushion that looks like a load of cows udders, it is really comfortable. That evening Helen had to return home for work the next day but Colin stayed over to be ‘on duty’ the next day. The OT (Occupational Therapist) went with Colin to risk assess the wheelchair access in the Taxi and agreed it was not safe and it could not be strapped in. Again, Dennis was told this but he called us all stupid and said we weren’t doing it right and that he had put plenty of wheelchairs in the back, even motorised ones and that he would be able to get it in himself if he could, all very frustrating for him. However much we all explained he was adamant and got really bad tempered with us. That night I decided, the only way for Dennis to realise the difficulties was for him to see for himself so we wrapped him up and the OT, Colin & I showed him the problems. Eventually he accepted the difficulties. Now we had to somehow get transport for him to come to the Barn over Christmas!
There is a minibus type vehicle at the hospital called the ‘Barbara Bus’ which is funded by an ex-patient for the use of families to enable patients to get out and about. It had already been booked over Christmas but was available for use on 23rd, Dennis’s pre Christmas day at the Barn. However you have to be registered with the organisation which caused a few problems with the Christmas post. I also needed a vehicle for 25th, 26th & 27th. Again these were either pre booked, too far away to be viable, too expensive or only available for rent over a longer period because of the Christmas break. Eventually I found a company whose owner just happened to live in Chesham and was prepared to deliver & collect it to the barn. Using my best negotiating powers I managed to get a vehicle for five days but only pay for the three we required it for, after all it is the time of ‘Goodwill.’ It was an additional expense I had not budgeted for but something that had to be done, we had come too far for a obstacle to stop us now.
I have also had to make assessment visits to the Barn with the OT to check the environment and facilities are suitable for Dennis. The OT, also called Hazel, loved it. We arrived as a florist was decorating it. It was very tasteful.
I also had to register Dennis with the local GP and request they fund the supply of a bed, air mattress, hoist and sling to provide Dennis’s care needs whilst at the barn. Everybody is so kind and we really appreciate it.
I came home for a night the week before Christmas to collect ‘goodies’ on the same day as Dennis had a ‘video swallow’ to check there was no obstruction as to why he was not able to eat better. There does not seem to be a problem but we have not had official feedback yet.
On Monday 22nd, Colin, Aneta, Charlie and I moved into the Barn. We added a few personal touches and it soon felt like home. It has a large living & dining room downstairs with wood burning stove, kitchen, bathroom and two twin bedded rooms. Dennis’s bed had been erected in one of these rooms, overlooking the living area.
Upstairs are two massive king size bedrooms with pitched room and another bathroom. Everywhere is oak beams and large wooden furniture. I though it would be cold but it is as warm as the hospital. It is on a beef and arable farm with views across the Chilterns and less than 10 miles, 20 minutes drive from the hospital.
We had arranged to bring Dennis out for a ‘trial’ day on Tues 23rd. This would give us practice with accessing the vehicle and the journey and give Dennis a chance to familiarise himself with the barn before Christmas Day.
Although the journey was rather traumatic, more due to just being out the hospital, accessing a vehicle, being bumped about in a rickety wheelchair, (as he has not been allocated a permanent one yet,) in a rickety vehicle, (wheelchair accessible vehicles are usually a ‘van’ conversation) rather than the comfort of a saloon car, with Dennis taking the shock from the road surface, he did remarkably well. The first journey was full of ‘oohs’ and ‘ouches’ but each trip seemed to get better for him. Colin’s driving was exemplary, he was so considerate on the country lanes, trying to miss every pothole, this meant he wasn’t able to have a Christmas ‘tipple’ with us, until later that is!
Much to our delight, Charlie has learnt to say Grandma & Granddad, it was lovely to hear him say it, especially when he hasn’t seen much of either of us lately. Dennis had a good day at the barn. As soon as Charlie was dashing about, drawing his Granddad pictures and generally amusing everyone, Dennis’s eyes opened and much to his delight was soon downing a beer! After homemade soup, Dennis had a rest while we cooked a nice roast beef dinner. He slept for nearly 5 hours! I kept going in to him to check he was OK, and a little smile lit his face, totally relaxed and just enjoying the atmosphere. To see him like this makes all the effort worthwhile. All too soon, it was time to take him back to the hospital. He didn’t want to go. If he had been a little more advanced with his fluid intake and overnight ventilation it could have been possible. Perhaps this helped him see that with a little more commitment over the past few weeks he could have achieved this. However it was wonderful to have him with us, I dread to think what it would have been like if we had not achieved this goal.
On Christmas Eve Dennis rested at the hospital, while Colin, Aneta, Charlie & I did the last bits of food shopping. The rest of the family joined us late afternoon / early evening and the Christmas celebrations commenced!.
Christmas morning, Colin & I were bright and early at the hospital to collect Dennis, this time in our hire vehicle. This turned out not to be as comfortable as the Barbara Bus’ but was at least our ‘rescue vehicle.’ One of Dennis’s presents was a red fleece cap with white ear / neck padding with ‘Ho, Ho, Ho, embroidered on it, I also brought him a snug red blanket with Santa on it to keep him snug and warm on the journey.
Twelve of us sat down to Christmas lunch which was as good as ever with everyone having taken a role in its preparations, especially providing the cooks, and chef, with seasonal beverages! Dennis sat at the head of the table, as usual; it was lovely to have all the family together. Although Dennis did not want to miss anything, he took another afternoon nap. Again, ‘out like a light’ as soon as his head touched the pillow!
Boxing Day and Saturday followed much the same pattern, with more food preparation, eating, drinking and clearing up, along with present opening and jollity. Dennis was out of the hospital from 9am – 9pm, a long day but he managed well. We crossed a few hurdles and had several mood swings, but all challenges and pitfalls that have to be confronted and addressed. It was a reality check for us also.
The children’s support with personal care was amazing; I could not have done it without them, I am most grateful. We are lucky to have two such supportive children.
On Sunday Dennis rested at the hospital whilst we packed and tided the barn. I am so pleased we did it and were able to spend Christmas together. As Helen said, at the beginning of November, she did not think it would be possible but Dennis had rissen to the challenge and achieved his goal. Although it had been a traumatic journey at times, Dennis, as usual, had done it his way and in his own time. He keeps saying to me ‘trust me, I will do it’ I’m sure we will and the ride is not going to be smooth or without heartache.
On the ward, staff cannot believe the change in Dennis. He has blossomed, although still difficult to understand, he is back telling his stories, usually with me interpreting, with his cheeky antidotes and endearing grin. The brightness is coming back in his eyes at times. Eating better, but still very small amounts, his face has filled out a little and his complexion healthier.
Thank you to all of you who sent us such uplifting and encouraging Christmas cards, we have both been touched by your thoughtfulness. I am sorry I did not send any, most unusual for me, although I bought them and had every intention to send them, somehow I ran out of time. I have decorated Dennis’s room with a mini light tree, poinsettia, seasonal arrangements and a board full of your cards, it is very festive looking. We hope you all had a good Christmas and thank you also for your thoughtful texts. Next update in 2009, let’s hope this brings more steps forward. Our love to you all xx
Monday 30th December - Sunday 11th January – Happy New Year to you, as a lot of people have said to us, I hope it is a better year for you.. Until Dennis’s accident, life was good. I used to think what we have done to deserve to be so happy. We have a nice home, two great children, lovely family and supportive friends. Both in employment, doing jobs we enjoy, enough money in our pockets to do what we wanted, we were happy, and of course we have each other. Now we have this, but we will get through it. As I constantly tell Dennis, it has happened, one of us could have had a stroke, heart attach, cancer, who knows what is round the corner for any of us. Many times I have said to myself, what have we done to deserve this? Something like this certainly does try your strength and for some people, possibly their relationship. Some people just cannot cope with illness or changes. Normality is what you make it. Of course our lives will be different, we will not be able to do everything as we did before, but I have no intention of this engulfing our lives. Dennis and I cannot do this alone and if you all rise to the challenge with us, it can be looked upon as a ‘learning curve!’ Thank you all for your support so far x
Christmas, as you have read, went well, although leaving us all pretty exhausted. New Year week was pretty quiet in the hospital so it gave us time to recharge our batteries. Dennis had come alive again and a big smile appeared on his face every time someone asked him how he got on. Having realised this, now Dennis is saying to me, ‘take me home’ As I explain to him, he has to reach a certain level to enable us to do this. There is so much more he can achieve to enhance his wellbeing but of course this takes effort on his behalf. Although Dennis has always achieved his goal he does tend to ‘moan’ a bit along the way! His body is tired and weak and everything is a struggle. Seeing what is possible has spurred him on, unfortunately he is still quite down being back in the hospital environment. However, the physiotherapist and Occupational Therapist have sprung into action, they are getting quite fond of Dennis when he gives them one of his big cheeky grins and a friendly word of endearment, and are endeavouring to move him forward. Dennis has said to me ‘I think I’ve turned the corner, I think I am on the road to recovery!’ Let’s hope this is what the New Year will bring.
We had asked what normally happened on the ward on New Years Eve and were told, it was just a normal night! Dennis & I have, for at least the last 26 years, spent New Year with several friends, eating drinking, playing games, fancy dress, murder mysteries all sorts of exciting things. How could we not start this year together when we have so much to wish for? The children were also concerned. Helen and Iain had been invited to friends for dinner and of course Colin & Aneta are rather tied with Charlie, but both said they would sort something out rather than us be alone. Sister was asked and as a special concession, a couple of regular supporting families were allowed to stay. Dennis has a side room which is nice, I had sneaked in a mini bottle of champagne a friend had given us, plus smoked salmon, cheesy biscuits & liqueur chocolates. Seeing in New Year was not quite the same but at least we were together!
Monday 12th - Sunday 1st February – Again I apologise for not updating the blog but a lot has been happening. I know a lot of you log on to see how things have been going and it is disappointing when you don’t find an update. However, I have also been looking at the page and there have only been a few new messages. I know lots of you read the page but don’t always leave a message, or sometimes you do and it’s lost before it’s posted! Colin has been meaning to ‘revamp’ the layout but it’s one of those things that are going to take a while, but like most of us, he has a lot of demands on his time. Back to messages, I do read them to Dennis and he does like to hear from you, it is lovely to see the look of gratitude on his face, they do him the world of good, so please keep them coming.
The New Year started with me discussing my return to work. I have been so grateful for the time I have been able to spend with Dennis. It has been agreed that I will work two or three days and to use up my annual leave the rest of the week to be with Dennis. I just got this sorted when I returned from my first two days back at work only to find they had put Dennis on a four half day course on Independent Living and the next course is not until June. This covers all aspects of the different types of funding, how to utilise the care, where to find carers and talking to ex-patients that are eligible the service. I really felt it important to attend and had to go ‘cap in hand’ to my boss asking for additional annual leave and to change my working days. Dennis came with me to the first meeting, but half way through his BP got the better of him and he needed to return to his room and his bed. The second day was all about funding, mind boggling for the best of us, so he decided to go to his gym session instead. The next two sessions are next week. Typical as well, it had been arranged that a goal planning meeting be held before I return to work, this was cancelled at the last moment, and then rebooked for a day I was working. I was livid, luckily Colin was with Dennis so he stood in but still a lot of my concerns were not raised. They just seem to skirt over ‘un met goals’ but believe me I will be raising them at the next meeting in two weeks time. Also, what is ironic, Sunday night when I left Aylesbury to go to work the next day, an overnight fluid drip is suddenly given to Dennis, I had made it quite clear before I left that if when I returned he was dehydrated or had a urine infection, through lack of assistance to support him drinking, I would hold them responsible. It’s funny how it is suddenly authorised when it suits them!
Before we left, Helen and I went looking for the ‘weighing platform’ that we had been told for weeks that Dennis would be taken too to check his weight loss. We found it in an unlocked Outpatients Department and weighed Dennis in his chair and then the chair on its own. We were shocked, when we calculated the difference. He has lost 7 stone since the accident. Gone is the ‘beer belly’ and a lot of muscle tone, he definitely doesn’t want to loose any more. He looked very gaunt at his low point after the Christmas break but has started to eat a bit better now and his face has filled out a bit and there is more colour in his cheeks which is good, I just hope the staff continue to encourage him whilst I am not there.
I had hoped that by the time I returned to work, Dennis would have been a bit further down the road in his rehabilitation, but it is still amazing how far he has come. However, it is quite frustrating for me to see other patients come and move on from the ward, even go home, and we are still here! Nevertheless Dennis has done remarkably well. He is still hampered by his blood pressure lowering when he gets up in his wheelchair which makes him feel awful and stops him moving forward. He has been getting some tight feelings in his chest and difficulty breathing in. These have been investigated, his chest, lungs, blood gasses and everything else seems fine but they will be doing a 24 hour monitoring just to make sure. It seems the plague of the ward that patients suddenly experience heart problems and several have suffered minor heart attacks, we certainly don’t want him to experience one of these! He is also going to have bladder investigations as urine production has been a bit erratic. He has inherited a ‘doggy’ kidney so has been having annual checks at St. Georges but they have decided to do their own.
After months of complaining of shoulder and neck pain Dennis had a CT scan on Friday. It has been mentioned that the cervical ‘metal work’ in his neck might be reviewed or even taken out! Not sure about that until the Consultant decides. Dennis’s thoracic spinal area is very lumpy where it was shattered when he was run over. We have been saying could pieces be floating about pressing on muscles and nerves and be a cause of the pain he is in. Our concerns have been ‘pooh poohed’ until know. I hope something will be sorted out for Dennis as what is worse than being in constant pain.
The worst bit of news this month is that we have been told we are not eligible to receive any government funding, in the form of the Disabilities Facilities Grant – DFG to make the adaptations to enable Dennis to return home. There is a maximum allowance of £30.000 which would have just about paid for the extension we have been assessed as requiring to meet Dennis’s needs. Not that we like taking charity but it seems unfair that because I have been keeping Dennis’s business going, to enable him to pick up the pieces when he comes home, and going back to work myself, we have been told we have too much coming in to qualify. Even though I have given them a breakdown of the last six months accounts they do not take into consideration your out goings. Here we go, you try and pay your way and you are penalised. This is a great worry to me, although I am trying to stay positive for Dennis’s sake as he is always saying to me how worried he is about money and how are we are going to manage. We have of course been told to move and buy something more ‘user friendly‘ for Dennis but both he and I want him to come home to our present house. We feel it so important for him to pick up where he left off, I’m not saying it will be easy but how can he be told he will never return home. We have had plans drawn up for what we feel is an ideal solution and access can be achieved without too much disruption, it’s just getting the officials to agree and raise the funding! Time will tell.
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To be continued...