Ormskirk General
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PART TWO

Ormskirk General


Do Not Resuscitate

       

Now again we are all together and our point of congregation is Ward 14 Ormskirk General Hospital. Richard is in a room of his own, his MRSA infection is to assure him and us of this privacy for some months to come. There are forms to fill in, and Richard's story to be told to a new audience, as for Richard he is as he was, asleep most of the time but with occasional short periods of consciousness.

Remembering my reticence to ask the question that should have been asked of the staff on ward 28 at Manchester Royal Infirmary, I now find little difficulty in asking for a blood oxygen monitor for Richard, and explain my reasons. "Good idea" says the nurse in charge of Richard, and within minutes I have the reassurance of knowing that his count is 96% and that the monitor will be left in situ.

Ward 14 seems to be for the most part a stroke recovery ward, and from what I can see the patients are mainly elderly. It does not strike Dawn or me that possibly this is not the right ward for Richard, we are just glad that Richard has stood the journey, and that now he is only three miles from home, also the route from our home to the hospital is for the most part a country lane, and that at a push we could make the journey in five minutes. Further, now that Richard is local, there is no problem in my doing my day's work and then going home to collect Dawn before visiting him. My very early starts at work will continue though, so that we can have the maximum time permissible with Richard, this I'm sure is essential, there must be one unchanging theme throughout his constantly changing surroundings.

I am at work, it is Wednesday the 22nd December, and Christmas is just three days away but is not in my thoughts. Fortunately we did our Christmas shopping the Saturday before Richard's accident, and by some irony the only one for whom we have not yet bought a present is Richard. Dawn is with me, and the early start plus some good luck has seen me finish my last call for the day by 2.00pm. The car phone rings, I answer it, and now I find answering the telephone is a fearful task. It is Dr Elliot, he is Richard's doctor at Ormskirk Hospital, and he wants to arrange a meeting with us as soon as possible. I ask him is there an emergency, he says no, but wishes to speak to us ahead of any emergency that may happen. And so we agree to meet with him on Ward 14 at 4.00pm this afternoon.

Dr Elliot's speciality is neurology, and it is he who has accepted Richard from Manchester Royal, and thus Richard is his responsibility. He greets us as we enter the ward and bids us sit down. Dr Elliot is a softly spoken man; he is quite tall, slim and fair-haired. I feel that he is sounding us out, finding out just what we know of Richard's condition and then he comes to the point. Richard's condition is much more serious than he had been led to believe. So serious that he is going to move Richard to a medical ward and have a nurse with him at all times. This presents a problem as, so close to Christmas, the hospital is winding down and more staff are on holiday than usual. It strikes me that it might be for the same reason that Manchester Royal was so ready to transfer Richard out. But says Dr Elliot he will overcome the problem by bringing in agency nurses over the holiday period. And now Dr Elliot tells us of a major risk factor affecting Richard, of which we are totally unaware, and it is this that has lead to him calling us to this meeting. Because Richard is totally immobile he is at risk of developing blood clots, and if a clot was to travel to his heart or brain, the result would be catastrophic. There are drugs to reduce the risk of clotting, but these cannot be used on Richard yet as not enough time has elapsed since his craniotomy, his brain is still healing following the surgery it has undergone. If, says Dr Elliot, Richard suffers a heart attack or a stroke as a result of a clot forming, then he will suffer further brain damage. Resuscitation may be possible, but do we really want our terribly brain damaged son resuscitated with even more damage to his brain. Dr Elliot wants to mark Richard's file with the words Do Not Resuscitate but wants our agreement and our understanding first. Dawn and I look at each other, this is a shock but we do not need to think long. Yes we understand, and yes we agree. Dr Elliot thanks us and goes on to explain the likely problems that Richard faces. In his brief periods of consciousness he will be looking uncomprehendingly through a fog of fragmented and confused thoughts, he may not know who he is or what any of this is, and to heap further bewilderment upon him would be absolutely pitiless. Dr Elliot tells us that due to the damage to a particular area of his brain, it is unlikely that Richard will ever speak again. This has been indeed a bleak meeting, I thought I knew how bad things were, but I hadn't. Now leaving the meeting I felt that I had betrayed my son, he had hung tenaciously to life for the past four weeks, and now at the first time of asking I had given in and surrendered him to his fate.

Dawn and I crossed the ward and went into Richards's room, and as if to emphasize the seriousness of his condition, Richard was having some sort of spasm. His head was up off the pillow, his shoulders were drawn up and his back was arched upwards. Frightened I called the nurse but she was not too concerned, she said it was a typical symptom of brain injury; also his right arm and hand were clenched in a tight posture, also characteristic indicators of a damaged brain. After a few minutes the spasm passed, the clenched arm and hand however did not.

                  

Ward H and Christmas

Thursday the 23rd of December and true to his word Dr Elliot has moved Richard for now he is on Ward H, again in a room of his own and with him is a nurse. Indeed, over the coming Christmas and New Year holiday period there is always to be a nurse with him, usually an agency nurse, sometimes a hospital nurse, all the time he is closely monitored and our confidence in them and in the care they are giving our son is high.

It doesn't feel in the remotest part like Christmas, and I don't feel that I want to make any concession to it but yet I must, there are cards to be put through letterboxes and presents to wrap, but not for Richard. For him Christmas is suspended, and for him our entry into the new millennium will go unnoticed and uncelebrated. And yet if he survives into the year 2000 I will celebrate, I will celebrate the failure of that ghastly symmetry that was set to see his grave marked -Richard, Born 1977 Died 1999 Aged 22 Years- and I will celebrate the failure of that dreadful metal Coffin to make its claim on my son.

25th of December 1999. A hospital is an eerie place at Christmas, the usual busy bustle is absent, empty corridors, car parks almost deserted, patients and their visitors at a minimum, but Richard is here, and so are we. We have come from another hospital, Whiston Hospital, my mother has made it through her operation and we have watched her eat her Christmas dinner. My black moment fears of a double funeral have subsided, my mother is to have one more Christmas dinner, that too in hospital and then, slowly, she will lose her battle.

Richard is conscious and looks at us as we enter his room, no smile, no sign of recognition but he is looking at us. Also he now makes some effort to look to his left as we move to that side of his bed. Dawn says to him "Touch dad's face Richard, touch dad's face." And then, after a long pause, Richard hesitatingly makes an attempt to lift his hand to my face, or at least that's what it seems to be, and that's what we want it to be. But as with Thomas, I am in doubt. Richard as if exhausted by this effort now sleeps. Is it sleep, and when awake is it really wakefulness, or are these states simply manifestations of the same coma, for Richard does not know who we are, or indeed who he is. It is as if he has just been born, dear Lord, how do we go about putting back into him the twenty-two years of life's experiences he has already known. I think I am now just starting to realise the enormity of what faces us all. For a little over four weeks I have been begging God to save my son, to let him live, and now maybe he is going to live, but will it be the Richard I implored to drive carefully that night in November, or will it be my son's body housing an unknowing entity. These are strange unsettling thoughts, but I know that whatever of Richard is returned to me, I will cherish and look after, he will not want for love and caring. And I say to that which governs providence, this far but no further, you have done enough to Richard, now you shall deal with me.                             

It's time to go; I tell my sleeping son that tonight Dawn and I are having a meal with James and Janet at their new home, and that I long for him to get better so that we can all have dinner together. At James's it's a rather sombre gathering, and we drink to absent friends. I don't think anybody's heart is in it, but I see a little of James's natural exuberance starting to return. They have had to endure a house move and at the same time cope with all that has happened to Richard.  

I don't think it an admirable human characteristic, however, it is perhaps a merciful one that allows time to act as an emotional emollient. For in the space of that four week period in which we have gone from certain death to possible life for Richard, I have started to be able to accept an imposed new reality, a reality that still has Richard in it, but a very different Richard. I have started to be able to function at a day-to-day level instead of acting robotically, life's auto-pilot has gone back onto stand-by, in short, a sort of embryonic normality has just started to impose itself. I resent it and feel self-disgust at my inability to hold it at bay, and yet the alternative, the refusal to accept what is, brings madness.

And so passes Christmas day, also the few days between Christmas and New Year with Richard showing slight improvement, he is attracted to a bright scarf Dawn is wearing and attempts to touch it with his left hand, his right arm is clenched and useless. He is also fascinated by a brightly coloured ball, and when asked to, grasps the ball twice. His fascination with bright colours, and his hesitant following of movement is redolent of that of a baby, and his emergence from coma redolent of a baby's entry into life. He is at his most responsive for James. James's aggressive, almost bullying demands of Richard are complied with; he takes the ball from James and holds his hand, and also now can move his left leg. His right leg is in traction, broken at the hip socket, but shows no sign of movement. It seems that my right-sided son is no longer to have any use down his right side.

31st of December 1999. It is 10.00pm and we are by kind permission of the Ward Sister, going to see the New Year in with Richard. His nurse tonight is an Australian girl, she is working here for the holiday period, she tells us that the pay is good and that the pound to Australian dollar exchange rate is excellent at the moment, also she can visit relatives whilst here. She says she will leave us on our own with Richard for a while. It is now 11.00pm and in one more hour Richard will go with us into a new year, a new century, a new millennium. Just a few days ago this wasn't going to happen, he was to die and be left in the past. The division of time into its elemental seconds is of course a man made device, as is the calendar, and yet for some reason it is important to me that if we are to be separated from Richard, it should not be at a point that would see us in different millennia. As the clock counts down the seconds to midnight, Dawn and I on either side of Richard's bed hold each other, and we hold Richard. Midnight chimes, the Eiffel Tower is engulfed in glorious fireworks, Richard is awake, happy New Year Richard, happy New Year Dawn, and thank you God, it is the year 2000 and we are all safely in it. It is the year 2000 and Richard is still alive. As we embrace I look through the door and into the ward, the nurses and doctors too are embracing, and it occurs to me that these are special people that make the caring of others their life's work.                        

 

 New Year's Day

Every time we go into the hospital, I hear myself saying to Dawn, "I wonder what we're going to find today". And, as always there's that little frisson of fear, there is however no sound reason for this, after all there has been no phone call, and hence no rationale for this apprehension, yet it is there. We go into Richard's room, and it is a frightening sight that greets us, for he is in the midst of a severe spasm, he is in a semi upright position leaning over to his left, and with his left thumb in his mouth, pulling hard at the corner of his mouth. His entire appearance is both rigid and strained. I go immediately to get help and am struck by the irony that this is the first occasion that Richard has been on his own, and just look what happens when he is on his own. But the nurse is untroubled by Richard's contortions, and again we are told that this is not unusual with brain injuries, that it is probably just part of Richard's nervous system starting to kick back in. I'm not fully reassured by this explanation, the nurse repositions Richard in his bed, now he is lying down and seems more comfortable, the spasms are less severe and less frequent but he takes no notice of us, he does not seem to know that we are here.

Sunday the 2nd, and today he is very tired, the spasms are fewer and less aggressive. Between two of his spasms, Richard puts out his left hand as if trying to touch me, I hold his hand and he makes noises in his throat, is he trying to speak, is he starting to be aware? I find it difficult not to weep, but I mustn't, to do so now in front of Richard would be an unforgivable self-indulgence, for if he is just starting to become aware then to see me in tears at his plight would be frightening, no, what he needs is reassurance. I tell him he is doing well, that he is made out of tough stuff and that we are proud of him, then to take my mind off the lump in my throat, I place on his bed an inflatable globe, it's about the size of a beach ball, Richard likes maps, atlases and globes, and Dawn knowing this has bought it for him at a local shop. He looks at it and straight away puts his hand toward it, but cannot reach. My reaction is to help him but Dawn motions me not to, and then to my delight he lifts his left knee up and nudges the globe toward his hand and then grasps hold of it. This is wonderful, for it shows that Richard has the ability to reason, even if only at a very basic level, but that basic level can be built upon perhaps.

Tuesday the 4th.  Richard is attentive, and so I talk to him, I tell him why he is in hospital, that he has had a crash in his car, that he has broken his collarbone and pelvis and that he has banged his head and hurt his brain, and that whilst his broken bones will heal themselves quite quickly and without any help from him, his brain is a different matter. Brains, I tell him, are lazy things, and unless you work them hard they just sit there and do nothing. And so to get better he is going to have to work hard, harder than he has ever worked before, I tell him that there is no rush and that this hard work can be spaced over the coming weeks and months, and that we will be with him every step of the way. I go on in this vein for half an hour, and all the time Richard is looking at me, he doesn't take his eyes off me. Dawn is convinced that he has understood fully, I however am not sure, but cannot otherwise explain the intensity of his stare.  

Wednesday the 5th, and today Richard is to be moved. The feeling is that he is a little better and no longer needs the constant level of attention he has been having and is to be transferred to Ward A, but first he is to have his tracheotomy tube removed, I see this as a further indication of his improving condition. Once removed this will leave Richard with just one tube going into him, his Naso-Gastric feeding tube. When in intensive care he had a mass of tubes entering into his body, tubes in his arms, chest, neck and head. A terrifying sight, but now there is to be just the one, and that supplies his food and fluids, he is moving on. And so at 3.45pm we give our thanks to the staff on Ward H, they have been kind and considerate, we sense their sympathy toward us and our son, they are good people, we will see them from time to time in the hospital restaurant as Richard is to be here in Ormskirk General for four months, and this will become to us a second home. Down the stairs and along the corridor a little, turn right and we're into Ward A, over the coming months we are to find the staff here warm, friendly and sensitive, to Richard they are superb, they truly are the salt of the earth and when the time comes for Richard to move to his next hospital, it is to be a very sad departure.

 

Ward A

One of the things I have read about in connection with recovery from Traumatic Brain Injury is that such recoveries tend to be in discrete steps, small but noticeable increments in cognitive functioning and in physical ability. As time passes the gap between improvements increases until eventually a plateau is reached, thereafter no further improvements occur. What I do not yet know is that this procedure can go on for many years, sometimes in excess of ten years, and so when over the coming week Richard's condition shows no improvement, I start to think that the dreaded plateau has been reached and feel very flat. Dawn, however, whose mood is much less susceptible to oscillation than mine, takes the much more sensible and ultimately correct view that Richard is just a little off colour. Sure enough, next day he is back on form, watching me intently when I speak to him, also seeming to look at some photographs we've taken in.  

Michael is much easier now and is sufficiently relaxed about his brother's condition to have written a little verse for him. I hope that one day Richard will have recovered to a point where he can read this for himself and know just how much he is loved by his family.

 

Richard

The buzz, the cramped stomach.

The want to shout out loud "My brother's alive!"

The sheer thrill of life, my brother's life and my want to share it with him.

 

To be by his side and feel his hand in mine.

To look him in the eyes and watch as he looks back into mine: a recognition, knowing he knows me and knowing I know he knows me.

 

Exhilaration, thrill and excitement dampened only by the sheer reality of a condition unknown.

 

I love you Richard, and I always will.

 

 

Michael Cook

10/01/00.

 

  

Over the coming days we are to meet various people who are to become central in Richard's battle. There is Lisa the speech therapist, it seemed odd to me that a speech therapist should become involved at this stage, for Richard cannot speak, and, we have been told by Dr Elliot that it is unlikely that he will ever speak again. But communication is not reliant solely upon speech and Lisa has plans to establish an alternative means by which Richard can communicate, however, for now she wishes to find out if Richard can swallow in a controlled fashion. This is vital if he is to learn again how to eat solid food and drink fluids without passing them into his lungs. Does he have a gagging reflex? Without this even small particles or fluids going the wrong way could cause severe infection, with all the attendant risk that that poses for someone in Richard's condition. Then there is Philipa the physiotherapist and her team; they are vital in teaching Richard that he has arms and legs, and in how to start using them again. The more that they can work on his physical condition the less likely he is to develop blood clots. But they are hampered at the moment by the fact that Richard's right leg is in traction and that he may have to transfer to Hope Hospital Manchester to have the socket repaired. However, good news comes from Ormskirk's orthopaedic consultant surgeon, Richard's hip socket is healing and knitting well, surgery will not be required, indeed a few days later on Monday the 17th of January the traction equipment is removed and now Philipa's team can start the intensive physio that Richard so much needs. It is after one of these sessions that Philipa talks to us, she tells us that we must accept that the old Richard has gone, that this Richard is different, there will be flashes of the old Richard from time to time, but that largely the old Richard is no more, and then she says something to us that I will always be grateful for, she says that there is no medical reasoning for her saying this, but that she feels she can see in Richard's eyes an intelligence that is worth fighting for. There is some intangible something in his eyes and he is worth the fight. There are moments in this long and dreadful period that stand out, and this is to be one of them. I think it takes courage to face parents up with an unpalatable truth, and even more courage to give them hope that comes from gut feel alone. Thank you Philipa, thank you for your courage and for your perception.

A young doctor whom we have seen on Ward A from time to time wants to talk to us and takes us into a small room. He tells us that Dr Elliot and others have been in discussion about Richard, and on the best way forward for him. He will require some more time at Ormskirk to build up his strength and stability, that there is a small surgical procedure to be undergone. This will entail the placing of a tube called a peg directly into his stomach, allowing the removal of the naso-gastric tube currently being used to supply Richard with food and fluids. It's a better long-term alternative and will be done in the next few days. Our young doctor then goes on to talk of the medium term plans for Richard. He will before long require a form of care that is not within Ormskirk's reemit to provide, in short he will need a rehabilitation hospital. This is a bit of a shock to us, for Richard has settled well here, indeed has just been moved into a larger room, one which affords the physio team all the space that they need in order to work with him, and to be honest we like it here, it is friendly and feels like home. The doctor perhaps sensing our unease explains that whilst for now Richard can get all he needs here, there will come a time when further progression can best be achieved at a unit that has the expertise and equipment to take Richard to his full potential. I ask him what does he feel Richard's full potential to be? A pause and then, I don't know. I ask him how does Richard perceive his current situation, again the same answer. It could be that Richard has no idea who he is, no memory of the past, it may be that the damage is such that he does not have the capacity even to wonder at his situation. This is a concept that at this stage I struggle to comprehend. If my right arm is cut off, how can I not know it's gone. Another possibility is that Richard is in a locked in syndrome, fully aware of what's happened to him, yet totally unable to communicate outwards. What a ghastly and frightening position to be in. I don’t know if it's the horribleness of this last possibility or if it's viable reasoning that allows me to dismiss this option, but I am more sure now than ever that we must spend every effort and all the time that we possibly can with our son, he must be fully sure of us, he must know that when we are not here, it will not be long before we are here. We leave our meeting with the doctor feeling both agitated and excited, agitated that Richard's cognitive state is completely unknown, excited that despite this there are plans for his future. I must do some reading on Rehabilitation Hospitals and learn just what miracles they can perform.

My reading is to be of American models of rehabilitation practices, written by the parents of American children whom have suffered the same horribleness as has our son, it is not reassuring, and I am starting to learn that the road to recovery from Traumatic Brain Injury is long, hard and incomplete, and that comparative wholeness is the best that can be achieved. Miracles are not on the Neurological Rehabilitation Hospital menu.

Progress

Lisa the speech therapist has left Ormskirk Hospital, she had told us she was leaving and it's just unfortunate that she has had time for only one session with Richard. Her replacement is not yet in situ, and it seems that there is to be a short period without speech therapy for Richard, however Philipa the physio has decided to see if she can persuade Richard to use blinking as a form of communication. He does seem to take a lot of notice of her, and patiently but in a matter-of-fact manner she asks him to give one blink for yes, and two blinks for no. I'm impressed by the total lack of patronisation in her tone, it's a sort of -well you can't speak at the moment Richard, but you can blink, so give me one slow blink for yes or two slow blinks for no, understood?- I fail to see a response, but it is generally accepted by those watching that Richard has given his reply, one slow blink.

Throughout the rest of January we see a gradual improvement in Richard's condition, he is a little stronger now and on the 20th there is a pleasant surprise waiting for us as we enter his room, for instead of being in bed, or surrounded by the physio team, he is sat in an easy chair and is holding his head up. I think I see a slight flicker of a smile on his face as we exclaim our surprise. Philipa tells us she thought we'd be pleased. Pleased? You bet we're pleased, this is the nearest we've come to normality in the last eight weeks. Richard drops his head, "Lift your head up son," I ask him, and slowly he does, then a few seconds later down it goes again. "Head up Richard," and once more up it comes. This is wonderful, for he hears us, and he understands us, there is hope for the future.

We have been shown some exercises to do with Richard; they are intended to stretch the tendons in his feet and legs and to generally condition him. We feel it's time that we took a more active part in looking after him, particularly in respect of his natural bodily functions, cleaning up etc; the ward staff are a little reticent, they appreciate our wish to become involved, but Richard is their responsibility and if we were to drop Richard whilst cleaning him it could possibly have insurance and or compensation ramifications. However, by the end of the month it has been accepted that we can do some basic jobs with him, and so now we routinely give Richard a bed bath, wash his hair and shave him. We've also been shown how to use the hoist and so now can get him into and out of bed and can sit him on the commode. Going to the toilet is something that we take completely for granted; knowing when we want to go to the toilet is second nature, and yet following a severe head injury this basic awareness completely disappears.

The physio team have what looks like a medieval machine for inflicting torture; it's a standing frame. Richard is hoisted to his feet and strapped to the frame, the purpose of the frame is to get him used to being upright and to strengthen his legs. He cannot fall but he can faint, and on two occasions very nearly does so, resulting in a rapid return to his bed. He finds it very tiring, but as he still can't have the anti-clotting injections, vigorous physio is a very important factor in Richard's daily routine.

The new speech therapist is now in situ, and she has had a couple of sessions with Richard. She has decided that his swallow is quite good and has tried him on ice cream, he has managed to take five teaspoons and then waved away the little ice cream pot in imperious fashion, this pleases me, as it is so like the old Richard.

Friday the 28th and today Richard is to have a feeding (peg) tube placed directly into his stomach. As procedures go, this is fairly minor, but we of course are relieved when Richard is returned from theatre in good order, and then surprised when the physio team turn up for their usual afternoon session. However, they tone down the duration and extent of the exercises to suit their semi-anaesthetised patient. By the end of his session Richard is clearly in pain and is given something to ease his discomfort.  

Dawn has brought in some photographs and I pass these one-by-one to him to his left hand, his right hand and arm have no use in them, inadvertently I pass one to him upside down, he immediately puts the photo on his bed and gets hold of it the other way up. Dawn and I are overjoyed at Richard's ability to recognise the error and to correct it.

Tonight we are to go home with a spring in our step, but not before having our heartstrings tugged, for when it is time to go and we bid sweet dreams to Richard, he pushes his sheet down and lifting his head and shoulders off the bed makes to come with us. We explain to him that he is not well enough to come home yet, but that if he works hard with Philipa and her physio team, then, it will not be long before he can come home. Richard seems to accept this and slumps back onto his pillow. There is a spring in our step but also an ache in our hearts as we walk out of the hospital, and we wonder what tomorrow may bring.

Monday the 7th of February, and today is a good day. At the suggestion of the speech therapist, Dawn had a few days earlier taken into Richard a pair of cards, a green one with the word YES printed on it and a red one with NO printed on it. These had been left at his bedside so that anyone working with him could give him a choice of YES or NO to questions. The idea being that Richard would where possible be given a choice to make, and asked to indicate his preferred choice by touching the appropriate card. This so far had been inconclusive, but today when we arrived the physio's had him sat in his armchair and told us that he had clearly touched the YES card when asked did he want to get out of bed and sit in his chair. So I asked Richard did he want to sit in his wheel chair and go for a walk? Richard touched NO, I put the cards behind my back and swapped them over so that they were now in opposite hands, again I asked the same question and again he touched NO this time having to reach across the YES card in order to touch NO. Brilliant, even I had no doubt that this was intelligent and reasoned decision making albeit at a simple level. Twenty minutes later, asked did he want to go back to bed, he touched NO, then thirty minutes on when clearly tired he touched YES. This is really encouraging, it is the first unequivocally clear communication that we have had with Richard and it feels wonderful.

Wednesday the 9th. There has been much talk of transferring Richard to the Younger Persons Rehabilitation Unit, part of the Walton Neurological Centre, which is situated within the grounds of Fazakerley Hospital Liverpool and is administered by the Aintree Hospitals Trust. We've been warned that there is a waiting list for places and that they will only accept Richard if they feel they can achieve something with him. Today the Rehabilitation Ward Manager and Doctor are coming to visit Richard and carry out an assessment of his condition. I feel nervous, I have it in mind that if he is not accepted to Fazakerley then he will not make progress, and, despite all I have read, that if he is accepted then the sky is the limit. The gentlemen duly arrive and spend some time with Richard, then they closet themselves in an office and go through his records. Still I am nervous, Richard has never failed a test, and he must not fail this one. Ironically enough, the test that he came closest to failing was his driving test. The examiner told him that there was nothing he could fail him for, but that he wouldn't let him near his car! Having finished their deliberations Dr Marlowe and Mr Blair want to speak to us, they ask us what our ambitions are for Richard. My heart wants to tell them that soon Richard will be climbing mountains, that once again he will be jumping from aeroplanes, and that before long he will be running his own business again, and that that is what they are going to achieve with him. But my head has it that what we want is Richard safely back at home with us by Christmas, and able to enjoy watching television. They nod at this modest expectation and say that they will have him at Fazakerley as soon as there is a bed for him, I smile, we shake hands, and they leave. So it is a done deal, Richard is to leave Ormskirk soon on the next leg of a journey to who knows where. I feel heavy hearted, this place has become home to Richard, he is at ease here, the nurses are warm and sympathetic and very caring, we shall miss them all. However it is to be some time yet until the move, events are to take a turn that sees us back on the ghastly roller coaster that brings life or death, and we are to know both.

Unwanted News

Dawn and I are musing over the events of the day when the phone rings, It is eleven o'clock, too late for a social call, and my stomach cramps up but it's not the hospital, it's my step mother, she can hardly bring herself to speak and after several attempts tells me that my father has had a stroke, and spluttering through tears tells me that he is very poorly. They are both in their eighties and recovery from strokes at that age are thin on the ground. They live on the Isle of Wight and hence I can't easily visit, Fay my step mother fully understands this and tells me she will inform me straight away of any change in my fathers condition. My son in hospital, my father in hospital and my mother only recently out of hospital, this is without doubt the most troubled period of my life and I thank God for my wife, she is holding the stretched threads of my sanity together at the moment, without her I could not cope.

Over the coming days a worrying pattern starts to establish itself, Richard has headaches, also we have noticed that the section of skull that was removed and then replaced during his craniotomy is at times proud. It has always been inclined to be proud, but now at times it is markedly so. It would seem that something is going wrong. Initially it is thought that this is just part of the healing process, but when after the passage of a few days there is no improvement, it is decided to do a CT Scan. The scan is done on the 23rd of February and when there is no rapid report back, we start to relax a little. That evening at the end of visiting time Richard is clingy again and gives me two kisses, which is most un-Richard like.

Friday the 25th of February and a doctor comes to give us the results of Richard's scan, it's not good, he has a build up of cerebrospinal fluid in his head. Ormskirk is going to fax the scan results to Manchester Royal for their opinion. The naturally occurring fluid within the head and spine is constantly being flushed and replaced, but sometimes, particularly following a head injury the fluid within the head fails to drain adequately and the result is a build up, and it is this that is causing the headaches and his craniotomy flap to protrude.

As we leave the ward pre-occupied with what we have been told, we bump into Dr Christian. He is nothing to do with Richard but is treating Dawn for a chronic pain condition caused by osteoporosis. "Hello" says Dr Christian, "What are you doing here?" "Visiting our son Richard, he's on Ward A." "Oh, It's your son that's had the accident and suffered a TBI." We tell him of Richard's current problem, and Dr Christian pours oil on troubled waters. "He may need a shunt fitting to drain the excess fluid, but it's bread and butter stuff to a neuro surgeon. Don't worry he'll be fine." It is just the reassurance we need, and I wonder why it is that a doctor who has nothing to do with his case should know about him, is Richard becoming known about because of the fight he's putting up, it's a warming thought.

Wednesday the 1st of March, Manchester Royal have studied Richard's CT Scan and want to fit a shunt, this is a plastic tube that runs from inside the skull down through the body, and terminates in the abdomen. It will permit the cerebrospinal fluid to drain and thus reduce the pressure inside his head. Richard is to transfer to MRI tomorrow and will undergo the procedure on Friday.

Friday the 3rd. Dawn and I are sat outside the operating theatre, we have said our upbeat farewells to Richard, and now Dawn is in tears and I am biting hard on my bottom lip. The anaesthetist has told us not to worry, it should all be straightforward. You would think that after all we've been through with Richard that this would not upset us, but it does. Two and a quarter hours later, and a man walks out of the theatre and past us, he is drooped of shoulder and seems to carry the weight of the world about him. I recognise him, he is the surgeon who performed Richard's craniotomy. I want to thank him, but hesitate, and in that moment he is gone. I should have thanked him for saving my son's life, but I remained rooted to my chair. Seconds later and the anaesthetist walks toward us, he is smiling, all has gone well, there were no problems and Richard will be back on the ward shortly. The relief is enormous, this time the chance isn't missed and we give our grateful thanks.

We walk back to Ward 17, passed the chapel and the coffins, I try not to look, seconds later we are in his room and he is with us, he watches us as we put his posters up on the walls. He is checked at half hourly intervals, his blood pressure is up and his left pupil sluggish, a doctor is called, he examines Richard but all is ok. At 8.30pm we leave, Richard is fast asleep.  

The Highest Peak

Saturday the 4th of March 2000. We are limited to normal visiting hours and so don't arrive at Manchester Royal until 2.00pm. An earlier phone call assures us that all is well. We walk into his room and I give my usual greeting of hello son, are you well? My imagination has it that I've had yes as an answer, I look at Dawn, she has heard nothing. I look straight at Richard and ask again "Are you well son?" "Yes" comes again, and it is from Richard's lips, and then he lifts his left arm up and, looking at a cannular in the back of his hand says "I don't like this" and then "Where am I, why am I here?" I have never in my life experienced a moment like this before, Dawn and I hug and shout, then I rush out of the room to find a nurse. "Yes" says the nurse, "The night staff thought that they had heard Richard speak, but weren’t sure." Back in Richard's room I answer his questions, his speech is delivered in a robotic monotone and it is clear to me that he has no sense of time or place. He is completely unaware that this is the first time he has spoken since the 24th of November last year, but none of this matters I am ecstatic, I am on the highest peak that life has to offer and it is wonderful. Next I phone my mother, she is recently out of hospital, she cries with joy, her voice reduced to a whisper by the emotion, "Oh Jeff" she says, "God is good, God is good." Then I phone James and Michael, James strings a joyful row of expletives together, Michael is quietly thankful. I phone my stepmother, my father is still in hospital but is making progress, I ask her to tell my father that when he's out of hospital, and Richard is fit enough to travel, then we will go down to the Isle of Wight, and together we will celebrate two remarkable recoveries. Next it's Richard's business partner Andrew, he is in Amsterdam enjoying a stag night so I leave a message for him on his phone.

The rest of the day passes in a joyful haze; the section of Richard's skull that was prominent has dropped back and is now flush with the rest of his skull. From time to time Richard speaks, it is very difficult to tell what he is saying and tiredness is adding to his difficulties. Now it is the evening, Richard is sleeping and it is time for us to go. Along the corridor we pass the chapel, still I cannot bring myself to look at the coffins lined up there, lest I should bring their threat down upon my son. We make a slight detour on the way home and call in at Ward A Ormskirk Hospital, the nurses there are thrilled at our news and a buzz runs round the ward. "He'll soon be back with us then," says the Ward Sister. Happily we leave them, not knowing that Richard is to be back much sooner than anyone could have anticipated, in fact in just a few hours he will be back, not into Ward A, but into an altogether different part of the hospital.  

The Deepest Trough

At home Dawn and I are getting ready for bed, Michael I think is already in bed, the phone rings, it is Richard's nurse at MRI. "Does Richard have fits?" she asks. " No, he has spasms but not fits, why, what's wrong?" "He's having a full fit at the moment and we need to know if he has a history of fitting." Again I answer no and ask her is Richard in danger; she seems unsure and says she will ring back later, but I tell her we're on our way. It has all been too good; the shunt has given Richard back his speech but the price for this is epilepsy and Richard is having a seizure.

We get to Manchester Royal at midnight and take the long walk to Ward 17, this time I do look at the coffins; and all their menace is back. As we take the right turn that leads to his ward I see a nurse running, I know her, she is a Sister from Ward 14, and she is running into his ward and then into his room. All the ghastliness of this place is now back in me; the gratitude that overwhelmed me a few hours ago has gone and is replaced by fear. My life's automatic pilot is back, and once more I am just its robot. James's voice calls from a side room, he has got here before us. "Don't go into his room dad, they don't want us in there, they're working on him." "What's wrong with him James, what's wrong?" "He's had a bad fit dad, and it's not under control yet" I slump into a chair, Dawn and Michael are with me but I no longer see them, I am entirely back in my own pain. A doctor comes at last, it is Dr Almond the pleasant African doctor that we have met before, he tells us that Richard has had a seizure and that it has taken a long time to get it under control, and that during the fit Richard has taken vomit into his lungs and is very poorly. He is about to be taken for a CT Scan and will then go into the Intensive Care Unit.

Now Richard is being taken for his scan, he passes the room that we are in and I see that his arms are tied to his bed rails. I touch him as he passes and tell him that I love him, "I love you Richard, I love you." A while later Dr Almond returns and he has a smile, "I have some good news for you" he says, "Richard’s fit lasted for about an hour and a quarter, and this is close to the point at which damage to the brain may start occur, but the scan shows no further damage and it also shows that the shunt is functioning correctly, therefore the seizure is as a result of damage already sustained to Richard's brain and not to any new cause. Now then, there is some news that is not so good, Richard will need to be looked after in Intensive Care, and we have no beds available in our Intensive Care Unit, so I am going to find him an intensive care bed in another hospital. Meanwhile he is in our ICU being stabilised and got ready for his transfer."

And so almost four months on from when we were last in Manchester Royal’s Intensive Care Unit, we are back. My son has received of the best, and has given of the best and it is all for nought, for we are back were we started. Yesterday I experienced life at its highest peak, and now I am in its deepest trough. The ICU nurse working on Richard knows him and us; he gives us a wan smile, it is a smile of recognition and resignation, a smile that seems to say I'd by happy to see you anywhere but not here. He is the nurse who looked after the Irish lad Patrick whom was in the bed next to Richard's. I ask after Patrick and am told that he's fine. Patrick has made two visits back to the hospital; on the first he was a little confused, but on the second he was normal and now has gone back to Manchester University to resume his arts degree. I think of Patrick's parents, of his elegant and emotionally generous mother, of his quiet and warm father, and I'm glad for them.

Dr Almond joins us; "I've found an ICU bed for Richard". For some reason I think that it's going to be in Leeds. "Where is it?" I ask. He smiles and says "Ormskirk!"

It is 5.30am Sunday the 5th of March 2000, and not for the first time in his life Richard is being loaded into a paramedic ambulance within the grounds of Manchester Royal Infirmary, again he is to make the trip to Ormskirk General, this time in the care of a doctor, an anaesthetist and a very glamorous nurse. He is indeed life's delicate child.

 

 

ICU Ormskirk

7am Sunday 5th March, Ormskirk General Hospital. As we park on the visitor's car-park, I look across to the accident and emergency entrance and there stands a paramedic ambulance, on it the livery of Greater Manchester, it is the ambulance that has delivered Richard back to his hospital home. Just 10 hours ago I was happily chatting to the staff on Ward A, and joyfully agreeing that he would soon be back with them, and that after weeks of silence, presently, they would hear his voice. But now instead of making our way to the ground floor and Ward A, we are on the first floor and heading to the intensive care unit. Our group is silent and numb, our son, after enduring well the placing of a shunt, has succumbed to a severe epileptic seizure, a seizure which did not terminate of its own accord but which had to be suppressed by the use of intravenous drugs. A seizure during which Richard vomited and aspirated vomit into his lungs, a sequence of events which nearly took his life, and now seemingly places him and us back where we started. I wonder at the dedication of the staff at Manchester Royal Infirmary, twice now they have saved his life, they have been unstinting in their efforts toward Richard and ourselves, I desperately want my son to live, I want to be able to take him back to the intensive care unit at Manchester Royal and to show him off well and whole again and say to them, “This is my son Richard, you have saved his life, thank you, this is the true value of the work that you do, you take someone who is as close to death as it is possible to get and you work your magic, and this is the result, you deliver someone from death to life, you give a son back to his father, and all that I can say to you is thank you, with all my heart thank you.” However at this juncture I cannot even bring myself to revisit the staff on Ward A, I cannot tell them what has happened in the few hours since we chatted, I do not need to for they already know, somehow news has spread to them. It must be almost as crushing for them as for us, they have put weeks of professional caring and human love and hope into Richard, slowly and gradually they have strengthened him and us but now it has to start all over again.

We are guided into a side room inside the Intensive Care Unit, Richard is heavily sedated and once again connected to a life support station and again the station is breathing for him, the machine display says Mandatory, we have been here before. An anaesthetist tells us that they will attempt to remove the station on Monday but that it may be necessary to perform a tracheotomy, also that a further CT scan may be done in order to more clearly assess what has happened inside Richard's head. Two hours later, exhaustedly, we go home. At 2 o'clock this afternoon we shall return.

Monday the 6th, 9am. Richard’s eyes are open from time to time but it is a glazed stare that emanates from them, he is shivering, but there is encouragement from his breathing monitor, some of the breaths are assisted and some are spontaneous but most however are mandatory. In the afternoon James comes to visit, but Richard is asleep. Just as James announces that he is going to go home, Richard opens his eyes and keeps them open for longer than he has all day, and now he does not look so glazed over.

The ICU manager comes to us, he has had a phone call from the Fazakerley rehabilitation unit, there is a bed available for Richard, he has had to decline the offer, and Fazakerley say they will ring again when next a bed is available. There is irony here in that this offer, which is in itself acknowledgement of advancement, should come at a time when Richard has taken such a backward step.

Tuesday the 7th, 7am. And I make my customary phone call to the ICU to check on what kind of a night Richard has had, there is a slight pause and then a different voice comes on to the phone, there is a problem with Richard's urinary output, it is excessive, it is thought that he has developed diabetes insipidus. I don't really take in the rest of what is said to me, my mind races to an entirely erroneous conclusion, Richard's kidneys are failing, his system has had all that it can take, he is suffering multiple organ failure, he is dying. Once again it is Dawn that steadies the ship, she suggests that perhaps diabetes and diabetes insipidus are not the same thing, and that if Richard was suffering multiple organ failure and was dying, the hospital would already have rung us. She is of course correct but it seems that my mind wants to torture itself and sends my thoughts along agonising routes. Later at the hospital it is explained to us that Richard's brain is failing to produce a particular hormone and it is this that is the cause of his diabetes insipidus, a symptom of which is an excessive output of urine. It is to be treated with a nasal spray and should, if all goes well, sort itself out over the next few days.

This single bedded side ward that Richard is in is quite large, Dawn and I have chosen to put our chairs against the wall some little distance away from the foot of his bed, Richard's nurse (for it is one-on-one nursing here too) asks us are we sitting that far away so as not to be in the way, and assures us that we can sit at the side of the bed without being at all in her way. This is a kind observation for her to have made and again indicates that in intensive care units nurses are careful and considerate towards next of kin as well as to their patients. We are coming to know the nurses here now; there is Elaine, fairly new to intensive care nursing, Sharon from Southport whom is new to this hospital and it is shortly to move house from one side of the street that she lives on to the other, and then there is Val, an Irish lass, with whom I certainly wouldn't argue and whom tomorrow when I am in particularly self-pitying mood is to make me laugh.

Wednesday the 8th. Richard has had a good night, his ventilator is set at low level, he is opening his eyes on-and-off and spitting phlegm, this we are told is a good sign. The physio arrives to give Richard a little exercise and during the exercise Richard falls asleep, he always was contrary. He is being fed small amounts via his peg tube but has vomited several times and has opened his bowels, it occurs to me to wonder where all this is coming from when so little is going in. Again however there is some good news for tomorrow it is hoped that he will be able to manage without a ventilator but with just the assistance of enriched oxygen from a T-piece. By the evening Richard is looking very grey, very thin and very unwell, I am in despair, and not for the first time weep. Val looks at me and asks me what is wrong; lamely I ask her why does he look like this, and in her rich Irish accent she says, "He looks like shite because he feels like shite" This is such an obvious answer to such a stupid question that it makes me laugh.

Thursday the 9th. A pleasant surprise greets us at the ICU for Richard is off his ventilator, wonderful, he is receiving enriched oxygen but once again he is doing all of his breathing for himself, occasionally he is nebulised to help open up his airways, his breathing is a little laboured and he has been positioned on his side in case he vomits. It has been decided not to give him any food today as he is unable to keep it down, and the feeling is that he will benefit from being kept with an empty stomach. Nurse Elaine brings in a television for him to watch but he does not have his glasses and so does not take too much interest in it. For most of today his blood oxygen level has remained at or close to 100 per cent.

Friday the 10th. Today he has vomited again, but now it is just bile that he is bringing up, once again the decision is made that he should have no food, he is receiving all the fluids that he needs intravenously. Richard is now extremely thin, I remember back to a school skiing holiday that he went on; when he returned he was noticeably thinner, gaunt even but a good colour at least. Now when I look at him, at his extreme thinness, at his grey colour, at his profound weakness, I wonder is this what the survivors of Belsen looked like to their liberators.

This afternoon he is brighter, and is taking an interest at what is going on in the main section of the ICU that is beyond his room, the clear glass half walls allow him to watch the comings and goings, he has become aware of a sensor clip on his left index finger and has a couple of times tried to shake it off, I find all of this encouraging. Also the clips that had been inserted into his scalp during the shunt fitting procedure have been removed, just one more small step.

Saturday the 11th. Richard has managed to smile at nurse Val, he is still inclined to vomit and his bowels are loose, he is being given small quantities 30 to 50 millilitres of a multi-fibre food supplement and seems to be keeping most of this down. He has visitors today, Cheryl his ex-partner, Steve his university and Welbeck friend, and Kelly have come to see him, he is not too attentive but put his hand in Cheryl's. This is a nice moment. Cheryl and Kelly are attractive and pretty girls, come to think of it, all of Richard's female friends have hailed from Lancaster, and all have been good looking. One Christmas during Richard's Welbeck period I recall running him into Wigan, he was taking the train to Lancaster to enjoy some female company. Clearly there is something about Lancaster and its women that has totally passed me by.

Sunday the 12th. He is looking brighter today and is very preoccupied with self. He is trying to straighten his blankets and sheets, it seems to be important to him that his top sheet and blanket be free of creases, and, in order to placate his fussiness we turn his top sheet the other way up so that the Ormskirk Hospital logo is not visible. We have been here from 12 noon until 8pm and he has not been sick once, and as we left it seemed that he was trying to form words.

Tuesday the 14th. More alert today, and spent a small period of time sat in a chair at the side of his bed, his co-ordination too is a little better and Dawn thinks that he has given two slow blinks to a couple of questions that I put to him, but as always I miss these little moments. We have taken some photographs in and he seems to want a photo of Cheryl to be placed on top of the pile and spends some time looking at it.

Wednesday the 15th. Today Richard is to have a visitor whom he has not seen for three years. He is a young man whom like Richard gained a place at the Army's 6th form College Welbeck, but unlike Richard made the decision to join the Army as an officer cadet after completing his A-levels there. Dave (the young man in question) then took up a degree course at Manchester University and it is there that he and Richard were reacquainted. Richard spent his first year living in one of the university's halls of residence, these are rather cramped quarters particularly if you wish to enjoy some female company from time to time, and so at the start of his second year Richard moved into a flat in Burnage a suburb of Manchester which he shared with Dave. All went reasonably well with the flat sharing particularly as Dave was often away on army business, but when Richard moved his new girlfriend Cheryl in, the arrangement disintegrated and they parted company in somewhat acrimonious fashion. So it is all the more surprising some three years later, that Dave having learned of Richard's predicament should take the time and trouble to come and visit his old colleague.

Dave arrives at the hospital and to use his own words, reports to reception, then makes his way up to the ICU. If he is shocked at what he sees, he hides it well, and after a lengthy appraisal of what has happened and of Richard's current condition proceeds to talk to Richard in a confident and friendly manner. Richard looks at Dave but I am not sure that he knows who he is looking at. Dave tells Richard and ourselves of what he has done since completing his degree course at Manchester, and that tomorrow he is to go to Germany to take up a position as a junior officer with the British Army. I'm impressed with this young man, he is upright and solid, he seems to be every inch a soldier, and I am pleased that he has taken the time to come and see my son. Whether out of consideration to ourselves, or perhaps from a genuine belief, I'm not sure which, Dave tells us as he leaves that he feels Richard will get through this, and he hopes that the next time he sees him, he will be up and on his feet.

Thursday the 16th. As we enter his room Richard gives us a nod and a partial smile. And I note with pleasure that the only tube going into his body is his peg tube, the one that supplies food directly to his stomach. We have taken a newspaper in with us and I place this in front of Richard, he looks at it and with his shaky left hand proceeds to turn the pages over in clumps. His eyes appear to be scanning from left-to-right giving the appearance that he actually is reading the newspaper, but I feel that what we are seeing is what we want to see rather than what really is, it is clear that Richard can look at a newspaper in a conventional manner but I daren't allow myself to think that he has the capability to read it.

A little later in the day and Richard is sitting in his chair at the side of the bed, a doctor is making some checks, a pillow slides off Richard's chair and with amazing dexterity he catches it with his left hand before it falls to the floor. The doctor says, "Well-held Richard," and looks at us with eyebrows raised as if to say, how about that.

It is the evening, Dawn and I have had our tea in the hospital restaurant and on returning to the ICU comment on it seeming a little chilly, and asked Richard is he warm enough, he gives two slow blinks which even I can see, and so Dawn places a blanket on him. We are in the process of leaving, again Richard is trying to say something, we cannot understand what it is but try to give him the reassurance that he really is doing very well, and must keep on trying, and that we will be back again tomorrow. This seems to be what is required and he is easy again.

There has been talk today of Richard being well enough to go back on to a ward, but there seems to be uncertainty as to which ward it will be. We of course want him to go back to Ward A, but it will depend on where there is a bed available and we accept that.

Friday the 17th. Richard has now been longer in the ICU at Ormskirk Hospital than he was at Manchester Royal. Clearly his condition when at Manchester Royal was more critical than here at Ormskirk, but I think it indicative of the seriousness of the setback he has suffered, that it has taken this long for him to gain sufficient strength and stability so as to no longer need the services of the intensive care unit.

Good news, it is 2:30pm and Richard is on his way out of the ICU and is going back in to his old room on Ward A. We give our thanks to the staff in the ICU, they are a good bunch of people and have looked after our son and ourselves well. The number of people to whom we owe profound thanks is growing, and will grow even further yet.

  

Home on Ward A

Back on Ward A we set about putting the posters back on the wall facing Richard's bed, he is attentive and brighter, and is using blinks to give us yes and no answers to different questions. This really does feel like home again and it's clear that Richard feels it too. Within half an hour of being back on Ward A it seems that all the nurses that are currently on duty have popped in to welcome Richard back, and some say that they are looking forward to hearing what Richard's voice sounds like. I hope they don't have long to wait.

One of the staff nurses on Ward A tells me that they very much wanted to get Richard back into his old room in Ward A, as they considered that he had come to know them well, and they him. And that between themselves and the staff on the ICU, had contrived so to do. I think it speaks volumes for the staff at Ormskirk Hospital that they should concern themselves in this way. Clearly Richard could have gone to any ward where there was a bed available and been looked after adequately, but their response was to see to it that he was not merely looked after adequately, but also sensitively. Later in the hospital restaurant, one of the cleaning ladies came up to us to ask how Richard was doing. She has seen his progress from Ward H to Ward A, but has missed him over the past few days. We tell her what has happened. How very nice it is to find that so many people are concerned for our son and rooting for him, is it any wonder that we have such a warm feeling for this place and for the people that work in it.

Saturday the 18th. As Richard's stay here has progressed, we have learned how to, and are trusted with, some of the basic and routine care that marks his day-to-day life. We have just finished cleaning him up following a bowel movement, and he has made some noises as if trying to speak. As we hoist him back onto the bed he looks shocked as if something is wrong, and feels the bed with his hand, once he feels that we have placed an incontinence sheet on his bed he relaxes, and when asked are you all right now, he replies clearly “I all right now.” Dawn and I are delighted, these are the first clear words that Richard has spoken since his seizure. Now we feel that we can relax just a little, it would seem as per Dr Almond’s reassurance on the night of his seizure that Richard's brain has suffered no further damage.

Sunday the 19th. He was rather quiet this afternoon when James and Janet came to visit, but this evening he has been talkative, and this in front of Michael, who up until now had only our word for it that he had recovered the ability to speak. He has been speaking on and off for half-an-hour, some of it difficult or impossible to decipher and yet some of it completely clear. Again he asks, why am I in hospital, and again I go through all that has happened to him since the 24th of November last year. It is impossible to tell whether or not he can understand the explanation that I give him, but it is encouraging that he has the ability to ask the question.

Tuesday the 21st. Richard has worked hard with the physio's, he has been bending forward and back and from side to side, this is done with a great deal of help from the physio and her assistants, as he is quite unable to stand for himself and is palpably weak. At one point he says to them, I am in pain, so they decide to bring their session to an end and sit him in his easy chair.

I am well aware that he has lost a lot of weight, he is exceedingly thin and profoundly weak, but when a little later a nurse wheels into his room a contraption with which to weigh him, I am aghast to see that he weighs only 96 Pounds. For some reason I feel anger, and disbelieve the result, my 6 ft 1 inch son cannot possibly weigh so little. Three times I sit in the contraption myself and three times it reads 175 Pounds, it is not wrong, my poor son really does weigh just 96 Pounds. I put my arms around Richard, it is not so much a hug, more a futile and hopeless attempt to give him my weight and my undamaged brain. There are times, and this is one of them, when something happens that forces me to face just how extreme the damage to my son is. A machine has told me just how thin and just how weak he is, of course I already know this, but the machines unfeeling confirmation of what I already know has hit me hard. Why?

The hospital visiting hours are 2pm till 4pm, and 7pm till 8pm, but as Richard is in his own room and we are tucked out of sight, the staff allow us considerable latitude and it has become our habit to stay until 5pm and then to go to the hospital restaurant for our tea. Richard must have noticed this and at two minutes past five he points at the clock, which is on the wall at the foot of his bed, the only interpretation we can put on this, is that he has absorbed and noted our routine and now has noticed that we are running a little late. Remarkable. And so with Richard having drawn our attention to the time, we go for our tea. At 7 o'clock we return and I wonder if he has been looking at the clock knowing that we're due back. Richard is able to take a little food by mouth, and the nurse tells us that he has eaten some yoghurt and some ice-cream, however most of Richard's sustenance comes in the form of a multi-fibre food substitute which hangs in a bag on a drip-stand at the side of his bed, it is gravity fed directly into his stomach via a peg tube. The nurse having advised us of what Richard has been up to whilst we'd been having tea is stood at the foot of the bed holding a fresh bag of Richard's multi-fibre food, clearly he has become impatient with her and motions with his shaky left arm for her to hang the bag of food on the drip-stand. This brings smiles and nods of approval from us all. Remarkable again. As Dawn put it in her diary, he's coming on grand.

Wednesday the 22nd. Richard has a physio session in the morning and again in the afternoon. Of late the physio's have taken to leaving him sat in his easy chair watching the television, from time to time a nurse checks to see that he's okay. But today in between checks he has somehow managed to fall out of his chair and has grazed his groin and scratched his arm, it is decided that in future unless we are with him, the physio's will put him back to bed. The bed has safety rails and so he cannot fall from it. We don't really know how he came to fall from the chair, it maybe that he was uncomfortable and was making an attempt to get into bed.

Thursday the 23rd. It is the evening, James, Dawn and I are with Richard, he is becoming agitated, we ask him what is wrong but he cannot find the words to tell us. He is looking toward the corner of the room, where there is a chair and on it some blankets, knowing his fussiness we rearrange the blankets in a tidy fashion but this is not what he wants, there are a couple of posters on the wall near the corner and so we rearrange these, this too is not what he wants and he is becoming more agitated. Also close to the corner of the room is a sink with his toothbrush and soap etc on it, we rearrange these but again we are wrong and Richard's agitation is turning to anger. James goes over to Richard's bed, lifts him out of bed carries him to the corner and orders Richard to show us what he wants. Richard grabs hold of the tap, all he wants is a drink of water. This is another of those moments, my son who until a few weeks ago was running his own business, my son who has a BA honours degree, my son who has achieved so much in such a short time can now no longer even ask for a drink of water. This causes me to remember a television programme I saw many years ago, it was about a British soldier serving in Northern Ireland whom had been shot in the head. The special medical expertise that exists in Northern Ireland born out of the troubles there had enabled the doctors to save the soldier's life, but at what cost. I remember a scene showing the soldier supported on either side and from behind, walking along a corridor in the hospital, manifestly severely intellectually disabled he was making moaning noises as he made his torturous walk along the corridor. I'm ashamed to say that I wondered why his life had been saved if all that was left for him was to shuffle heavily supported and moaning along a hospital corridor. The makers of this TV programme went back a year later to make another film about the same soldier. It started by showing two men fishing together by a pond, they were father and son, to my amazement and disbelief the son was the very same soldier of a year ago. He was a little off-kilter, his speech a little slurred and his ability to deliver was a little slow, but the transformation that had taken place in just one year was nothing short of amazing and humbling. The narrator reminded the soldier of his shamble along the hospital corridor, and asked him what was he moaning about at that time. The soldier’s reply was that he just wanted a drink of water, he only wanted a drink of water, but he couldn't make anybody understand him. Dear God is my son now that soldier, dare I hope that a year from now he and I shall be fishing together by one of life's ponds. I shall never again be so arrogant as to pass judgment on the value of the life of a disabled person. It is with a profound mixture of emotions that we make our way home tonight.

Friday the 24th. After his physio session Richard in his fashion asks for his hair to be washed. We are now well used to washing and shaving Richard, to giving him a bed bath and to seeing to his toiletry needs. The nurses have shown us the best way to clean Richard up, and to change his sheets following a bowel movement. It is good that we can do this kind of thing for we spend much time here and it allows us to feel that we are doing something useful for Richard, and time-saving for the nurses. Whilst washing his hair I reach across him and lean on the mattress, inadvertently pulling hard on his peg tube, Richard lets out a shout and tells me in exasperated fashion that I nearly pulled it out. I apologise. There is something reassuring about this piece of absolutely normal behaviour. Later in the afternoon I attempt a little humour with Richard, I pretend to bite his finger, this shocks and frightens him, I must be careful how I play with him. Further encouragement comes at teatime when Richard manages to eat two-thirds of his tomato soup and to drink a half tumbler of orange juice. It is 8 o'clock and Richard keeps looking at his watch, Dawn asks him, “Do you want us to go home,” and his clear answer is yes. And so we leave with a smile, it is nice to be dismissed in Richard's typically perfunctory manner, this is the old Richard at work.

Saturday the 25th. I take any opportunity I can to encourage Richard to talk, and today I decide to go into potentially dangerous territory. He seems quite talkative and so I ask him what he remembers of the past, this seems a struggle and I'm not sure that he understands what I mean. So, pointedly, I ask him does he remember his accident, to my amazement he says yes, he remembers it well. I ask him to tell me about it, to tell me what he remembers. He tells me he remembers pain, paramedics, firemen and banged head. Dawn and I are shocked by this, these must be genuine memories as no one has talked in front of him about his accident. Although rendered unconscious in the accident he must have been sufficiently aware of what was happening around him, what a ghastly experience. And I think back to Peter's warning on that first night in the intensive care unit at Manchester Royal, that even deeply unconscious people may still hear and understand what is going on. It maybe that hearing is the last of our senses to desert us as we pass from life to death. Perhaps I should not have asked Richard such a question, and yet there is reassurance in knowing that he can recall this piece of his past.

Thursday the 30th. 10.00am. I am at work, the car phone rings. It is the staff nurse from Ward A, she is concerned that Richard's craniotomy flap is sinking too far into his head, I say that I too have noticed the dent becoming deeper over the past few days. Staff nurse tells me that she will arrange a CT scan for Richard as soon as possible, it maybe that he will have to return to Manchester Royal for a corrective procedure. I am beginning to realise, even to accept that Richard's continued survival is going to be peppered with such crises, I am also finding it tough to maintain my current routine of early starts at work, and then rushing through my work in order to be with Richard for as long as possible, I am becoming very weary.

 Later at the hospital I take a careful look at, and gently feel Richard's craniotomy flap. It does not seem to me to be any more indented than it was yesterday, none the less I'm glad that he has had a further CT scan, the details of which are being sent to Manchester Royal for their interpretation. It seems that the skull frequently fails to knit following a craniotomy, and so fixings are often used in order to secure the flap section back to the main body of the skull. And I wonder if this wasn't done in Richard's case because his prognosis was so poor, (a certain, but possibly protracted death, maybe five days,) little wonder then that the flap was simply left to float. But now as Richard's cerebrospinal fluid is draining readily thanks to the shunt, his flap floats at a lower level. I can only surmise that the piece of loose skull and membranes that line the skull are resting at least in part on Richard's brain. He is somewhat quiet and sullen on our arrival I think that this may be because his hands and head have to be strapped when he has a CT scan which to say the least must feel oppressive. But he cheered up a bit after a wash and shave, and after I put his T-shirt on he gave me a smile, Dawn said to him, "I didn't see that," so he turned to her and gave her a smile too.

Friday the 31st. No afternoon physio session for Richard today, and so I take up the physio's role and give Richard's arms and legs a little exercise. They have shown me how to do this, and it is whilst doing this that Richard suddenly pipes up and says to me, "I don't want a bruise." It is said with such intensity that Dawn and I can only laugh.

Late on in the afternoon and I am on my own with Richard when we receive a surprise visit from Dr Marlowe of the younger rehabilitation unit at Fazakerley. He has come to check on Richard and to see if he is still a suitable candidate for their care. He knows what has happened to Richard since his last visit and commiserates with him. I tell Dr Marlowe that within a few hours of his shunt being fitted Richard was able to talk for the first time since his accident. Dr Marlowe looks surprised and pleases me immensely by saying to Richard that he is looking forward to seeing him at Fazakerley in a few weeks' time. I am delighted that his place there has not been jeopardised by his setback. I look upon the rehabilitation unit as being Richard's springboard back into normality. No one at Fazakerley has made this sort of claim, and nowhere have I read of any such miracles coming out of any such establishments, and yet for some reason I have deluded myself and placed such a high expectation on Fazakerley, ensuring therefore that for me the only possible outcome is failure.

Dawn returns, and excitedly I tell her of Dr Marlowe's visit, as I finish my excited ramblings a nurse comes into Richard's room, she is not from Ward A, she introduces herself, "Hello, I'm Jill," and pointing to a Star Wars poster on the wall she says, "Oh, I do like Star Wars," and immediately Richard replies, "Star Wars is very much in the future." He then goes on to say quite a lot more but we are unable to make out what he says. Nurse Jill thanks Richard for the conversation and says that she had better get back to her own ward. Once again we are delighted with Richard's ability to add a little to the conversation, and once again I am warmed by a lovely little piece of humanity shown to him.

We are now into the first week of April 2000 and during this week Richard is to experience new things, and I am to receive sad news. First off on Sunday the 2nd Andrew comes to visit and brings with him a laptop computer, Richard is keenly interested in it and seems to remember how to use the touch pad, but the ataxia, which affects his left arm, makes fine control virtually impossible. None-the-less it is good to see that Richard shows some degree of recognition for a piece of equipment that he has used in the past. This week Richard is to have his first session on a tilt table, this is a more subtle version of the standing frame that he has already used, and it requires more effort and awareness on his part. He is placed horizontally on the table and his legs and trunk are secured to it, the table is then slowly rotated vertically through 90 degrees so that Richard is upright, his shoulders and head are not secured to the table and it takes effort from him to keep these in line with the rest of his body and not just let them droop forward. The new speech therapist is now in situ and having familiarised herself with Richard's abilities and disabilities wants to try him with a device called a light writer. This is not unlike a typewriter but with a single line display that shows, in large characters, whatever the user keys into it. Richard is quite interested in it and makes a reasonably passable attempt at the alphabet.

Tuesday the 4th of April. It is 10:45pm and the telephone rings, never good news when it rings at this time of night, my immediate concern is of course for Richard, but it is not the hospital it is my step-mother Fay. This time she is more controlled and manages to hold herself together while she tells me that my father has had a heart attack and is dead. He had the heart attack at 10pm; paramedics worked on him for 30 minutes but could not restart his heart. We are not to have our celebratory reunion, a celebration of two remarkable recoveries, but my father was 81 and for the most part had had a happy life, particularly the 35 years spent with his second wife Fay. I face the prospect of leaving Richard and Dawn for a couple of days in order to attend my father's funeral, and wonder whether I should really do so. Fay I know would understand if I didn't attend, but with some gentle reasoning from Dawn and Michael I decide to go.

Richard can now manage small quantities of normal food, and in effect has as his main meal of the day a scaled-down version of the hospital menu. This is another and pleasing step, albeit a small one, toward normality. He has done well for visitors this week, following Andrew's visit of last Sunday, Richard's other long-standing friend from his Welbeck and university days, Steve, has come to see him. Steve lives in Harwich and thus has a 250-mile drive to get to us, Steve spends most of Thursday with Richard, stays with us overnight and then spends another couple of hours with Richard on Friday before going home. And on Saturday the 8th, Cheryl is due to make another visit from her home in London, and this is much appreciated. I realise that as time passes the frequency of visits from Richard's friends will decrease, this of course is completely understandable, their lives are moving on at a pace, new loves new work, whereas for Richard life has come to a standstill, and we are so focused on him that we too have come to a standstill. I think our situation, mine and Dawn's, is similar to that of a couple who have just had a new baby, our total preoccupation with our new baby is placing us in danger of failing to acknowledge our other children, again completely understandable, but none the less to be guarded against.

Saturday the 8th of April. Having collected Cheryl from Wigan station, we make our way to Ormskirk Hospital, and as we approach Ward A we can hear Richard shouting. He is very agitated, flushed, and drenched in sweat, he does not seem to notice that we have come into his room; a doctor and nurse are with him, they have taken his temperature and blood pressure, and are trying to find out if he is in pain. We have seen this before haven't we? Richard snatches the glass of water from my hand in his ataxic left-handed fashion spilling most of its contents on to the bed, and greedily drinks the rest, his agitation abates and his colour returns to normal. It seems that although Richard can speak in a limited way, he is completely unable to articulate his needs and the greater the need the greater his inarticulation, the frustration this causes is plain to see and all I can do is to promise him that we will try harder in future to anticipate his needs. I feel enormous frustration too, as I can find no form of words that will allow my son to understand why it is that he cannot make us understand what he wants. He is trapped in a world in which he can do nothing for himself, he looks at the people around him, the doctors and nurses, his family, and none of us is able to understand what he feels he has told us. As far as he is concerned it is as plain as a pikestaff that he is thirsty and wants a drink, but none of us understand what he is clearly telling us. What a terrible nightmare he must feel he is in, and it is not one from which he can wake.

Monday 10th April. I am on Virgin's Wessex Scot Intercity Train on my way to Southampton and then on to the Isle of Wight, it is my father's funeral tomorrow and I shall be returning home on Wednesday. Virgin runs just the one Wessex Scot in either direction each day, and so I am to be away for the better part of three days. The alternative would have been to have driven down for the funeral, and then driven back again, theoretically this could have been done in a single day, but to have attempted this in my present state of near emotional exhaustion and physical tiredness would have been reckless. Funny how your view on things changes, up until Richard's accident I had seen no need to have a mobile phone, what possible reason could there be for anyone to need to contact me, or for me to contact anyone else whilst away from home. A mobile phone seemed to me to be a complete irrelevance to my life. Now I don't go anywhere without one, should anything happen to Richard I can be contacted, without it I would not be going to my father's funeral.

Dawn explains to Richard why I'm not with her, he seems to understand but as with everything else one cannot be sure that he really understands what he is being told. By Tuesday Dawn is quite sure Richard is missing me, however he does his physio and allows Dawn to wash and shave him. The ward sister contacts Fazakerley rehab unit to see if there is a definite date yet for Richard to transfer, and is advised that a place will be available for him sometime within the next two weeks.

Wednesday the 12th. It is the evening and I am very relieved and happy to be back with my family. Richard gives me a smile, and most unlike him, a kiss. Since his accident I have spent a good proportion of every day with him, the last three days have been very difficult for me but it's done with now.

Time to Move On

Over the next few days we attempt to get Richard used to the idea of moving to Fazakerley, I explain to him that its full name is the Younger Rehabilitation Unit Fazakerley, and then erroneously I tell him that it is called Younger because all the people in it are very much like himself, young men and women that have had head injuries similar to his own, and that it will be good to be with a lot of people of his own age whom have got similar interests, and who just like him are trying really hard to get better from bad injuries. I tell him this because I believe it to be true, it is an impression I've gained but I'm not sure from where or from whom, Dawn and I had been invited to visit the Unit, and this we had done, but at the time of our visit we didn't see any of the patients, and so my imagined patient profile wasn't challenged. It was clear that Richard was uneasy about the move, and a day or two later during a subsequent attempt on my part to ease the coming transition he said to me, "Don't even dream about taking me anywhere I don't want to go." This was the clearest and most lucid sentence that Richard had managed since his accident, and Dawn and I found it unsettling. We tried to explain that the reason for him moving on to Fazakerley was because he was now a lot stronger and fitter, that Ormskirk had finished its work with him and that Fazakerley was exactly the right place to go in order to get him back on his feet, and to get his brain working properly again. I emphasised to him that it would be better to be in the company of younger people all trying hard and willing each other on. I told him that there would be many more activities for him to get involved in at Fazakerley than there was at Ormskirk, the reason being that Ormskirk was a general hospital whereas Fazakerley was a specialist unit. Gradually he came to accept the move but with reluctance, I had done a good job of selling to him a change that he didn't want to undergo. If I had done my homework properly it is a move that we probably wouldn't have made, the YRU at Fazakerley is a very good unit indeed, but was not the right place for Richard.

Monday the 17th. Today he is chatty and perky, he is stronger now and has put weight on and tips the scales at 126 Pounds. Dawn shows him different group photographs, and asks him to touch the people that he knows, he touches Andrew, Dave and Cheryl, but others that he knows or knew he does not touch. In the midst of this I ask him to tell me what a mortgage is. Without hesitation he tells me that when two people want to buy a house for £2,000 they borrow the money, and that is what a mortgage is. Apart from being about 30 years out with the price of a house, it is a very encouraging answer and is much better than I had expected. Unfortunately, 18 months are to elapse before we get anything like this from him again.

Thursday the 20th. We have a date for Richard's transfer to Fazakerley, it is to be on Wednesday the 26th. It is clear that Richard is uneasy and he says to us, "You have been there, what is it like?" And so again I give him my idealised and imagined yet sincere description of what it is he is going to, he seems okay with this. I seek to change the subject and ask him what his thoughts are of an evening after we have gone home. And he says, "I think my thoughts between 10pm and 8am, I think about my friends." As with most of what Richard says, it is rather fractured and detached, and delivered in a monotone. I don't know why but I decide not to question Richard further as to what his thoughts are. A nurse comes into the room and we get on to the topic of football and Saturday's matches, Richard joins in the conversation and says, "End of season game, Liverpool 0 - Everton 2." It is not prophetic, Everton did not win but they did play Liverpool, and so he must be taking in what he is watching on TV.

Tuesday the 25th. Dawn and I are rather tense about tomorrow's move to Fazakerley, Richard seems to have accepted the change, but each time a nurse who is going off shift comes into his room to say goodbye, he closes his eyes as if trying to blank out what is to happen. He has not eaten anything today, we put this down to nervous anxiety, hopefully his appetite will return when he is at Fazakerley.

Wednesday the 26th. I must admit that this is the first occasion that I'm glad to have the excuse of being at work, and not at the hospital with Richard and Dawn. For this morning Richard's possessions are being packed ready for the move, his posters are being taken down from the walls and the nurses are coming into his room to say goodbye. For the last four months this has been his home and these people have been his family. He has come to trust them and the parting is painful, some of the nurses are in tears and Richard whom I have not known to weep since he was 13 is also in tears. Poor Dawn is having to cope with all of this, and it is clear that the emotion of the situation is affecting Richard greatly, for he is sick. These people have not only been like a family for Richard, they have been like a family for Dawn and me also. They have been compassionate, sensitive and caring, there has not been a single discordant moment throughout our four-month stay here. And so we say thank you to the staff at Ormskirk hospital, to the nurses and doctors on Wards A and H, and to those in the ICU. Thank you to the physio team and especially to Philipa, whom although at pains to point out that she was not trained in neurological physiotherapy nonetheless showed remarkable insight into Richard’s neurological condition. Thank you also to the cleaning lady that had watched Richard’s progress and asked after him, and thank you to Dr Elliot for his frankness and sensitivity, and for his preparedness to fund what must have been an extremely expensive package of care for Richard especially over the Christmas period. One day God willing, Richard will under his own steam, come back to this hospital and give them his own thanks, for this would be the finest thanks of all.

  

 



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