Bed 12

by Alison Murdoch

  Suzy isn’t the only person to help me raise my spirits. Our friends Sarah and John ask if they can meet up with me for the evening. “I’m sorry, it’s not the moment for you to see Simon.” “No, you dummy, it’s you we want to see!” We walk over to the Royal Festival Hall, where somehow one bottle of wine turns into three, supplemented by the final dried-up sandwiches of the day from the buffet. My system drinks up the laughter and alcohol so thirstily that I don’t even have a headache the next day.

  Perhaps my capacity for anguish and suspense is temporarily exhausted. The body has its own intelligence about what’s going on and what it needs to be able to pace itself. This whole business is so far outside my control that all I can do is hang on in for the ride.

  CHAPTER 23

  Patience

  “One step forward, two steps back,” cautions the staff nurse. “That’s what we say in ICU.” I am about to query her—surely, two steps forward, one back?—until I realise that she means what she says. Simon’s infection indicators are up again (white blood cells at 30, CRP over 240) most likely due to a urinary tract infection. It’s hardly surprising, they tell me, after nearly a month of lying in bed with a tube up his penis. When Simon is agitated we often have to pass the catheter bag, nicknamed the ‘golden handbag’, backwards and forwards across the bed to avoid it getting coiled around his torso. Apparently this also heightens the risk of infection. He doesn’t have a fever this morning, or look as ill as he did with pneumonia, but I’ve been told many times that it’s usually the infections that kill people in ICU. We need to get him out of here!

  The nursing team are visibly concerned and frustrated by the lack of progress. I have joked with them about my husband’s appalling record for punctuality and suggested this means he’s bound to take his time. My instinct is to say, “Don’t panic, things are moving slowly in the right direction, just be patient,” but their mood is beginning to rub off on me. For the first time I sense an emotional mood in Simon as well: worn out, fed up, and just as frustrated as the rest of us.

  I have to keep reminding myself that if it wasn’t for the threat of infection that looms over every ICU bed then we can be cautiously optimistic about how the situation is unfolding. Simon is still extremely agitated (on one occasion, he doesn’t stop moving for 48 hours) but at least this means there’s no risk of bedsores and it’s keeping his muscles in shape. Instead of an endlessly bleeping monitor above the bed, his vital signs (SATs, blood pressure, heart and breathing) are only measured every 4 hours. He doesn’t really need the tracheostomy tube either, except as a precaution to stop him choking on his own bodily fluids.

  In the short gaps between his incessant twisting and turning he seems more lucid. With eyes wide open he looks at the ceiling with an expression of either thoughtfulness or despair, and occasionally responds to the music that I play to him with a characteristic lift of his eyebrows. It’s him all right, albeit shrouded by a thick and impenetrable fog. But there are still no “appropriate responses”—he can’t open his eyes or mouth on request, or hold my hand. One afternoon he suddenly curls up against me for a few seconds, head on my shoulder and arm draped over mine. Who knows what is going on in his head?

  One day Simon makes two large poos, which create an incredible mess and mean that the poor nurse on duty has to change all his bedding twice over. I am there for the first one and watch him make a desperate lunge to get out the bed. I’m sure he knows what’s going on.

  Simon is also achieving some remarkable physical feats, despite his unconscious state. The ward has its own team of physiotherapists who come round every few days to manipulate his arms and chest. One of them, called John, has taken a particular interest in Simon’s case and today he says I can stay and help.

  John sits next to the bed in an ordinary upright chair, legs braced apart, and at the command “Sit!” the nurse swings Simon’s legs down onto the floor. Despite being unconscious and with eyes closed he is sitting up! I am fascinated by the look of concentration on my husband’s face. John then changes his single-word command to “Stand!” and with a bit of a prod Simon tucks his butt in and wobbles onto his feet. Within a few minutes he’s clearly wiped out by the effort, and collapses back into bed. We are all elated, and when the nurse shares the news with Richard the consultant during his evening round he thinks we’re kidding him.

  Encouraged by these indications of cognition, I spend much of the day whispering in Simon’s ear, reminding him of all the lovely things to come back for. I talk about our cats and our shared love of Devon, and list all our family and friends one by one. I remind him of favourite London haunts such as the National Film Theatre, the Royal Festival Hall and Gabi’s delicatessen in Charing Cross Road, and of how much he enjoys reading the London Review of Books. I also promise him that as soon as he comes home we are going to get the liver-and-onion-coloured springer spaniel that he has longed for all his life.

  Sometimes I sense he enjoys me whispering in his ear and giving him massages, and at other times my instinct is that he’d prefer to be left alone, both of which are equally idiosyncratic responses. It’s still a waiting game, but I am cautiously optimistic that Simon Keyes is slowly coming back to life.

  CHAPTER 24

  Saints and heroes

  I now understand why people fall in love with nurses. I am constantly amazed by the never-ending stream of beautiful men and women who take care of Simon. In addition to English nurses from both town and countryside, there are the soft accents of Scotland, Wales and Northern Ireland, the beaming warmth of the Philippines, the laconic wit of North America, and even the occasional visitors from the Antipodes coming through in transit like migratory birds. ICU attracts the elite of the profession and almost without exception the nursing staff are not only highly skilled and knowledgeable but also immensely attractive to look at.

  In quiet moments the nurses sometimes open up about themselves. Some are motivated by religious faith, although they’re not allowed to talk about this unless asked. Others are at the beginning of an ambitious career. Rick the American nurse is delighted that he’s just been accepted for a job in the trauma ward at the London Hospital, where he will be able to combine his experience in intensive care with the even more dramatic needs of accident victims.

  When I cheerily say to a departing nurse “Have a nice evening!” I’m told that if you’re on shift again the following day, you don’t risk even a glass of wine with your supper. I am enraged to discover that the majority carry the burden of student loans from their years of studying for the nursing degrees that equip them to do this vital and life-saving work. Many are boarding with their parents in satellite towns because they can’t afford to live near the central London hospitals they serve—even though these same hospitals can’t function without them.

  I had always assumed that nurses are constantly thanked and presented with flowers and chocolates but that rarely seems to happen these days. I find out that there has been an alarming rise in the number of patients who verbally abuse the people who are caring for them. One evening a nurse overhears me talking in the corridor with another ICU family about what a wonderful service the staff are providing. She comes running after me to express how much this means to her, because “we don’t get thanked very often.”

  As Nurse Jenny explained to my surprise on that first night, in ICU there is one nurse to one bed. My guess is that this is part of the appeal of the job. This is extreme nursing. There are no meals to serve, no TVs to adjust, no buzzers to answer. Instead, each nurse carries a minute by minute responsibility for the life of the person in their care, which more often than not is hanging by a thread.

  One of our favourite nurses is a young man called Peter. One day he refers to me as an angel, so after that we always call him ‘archangel’. Archangel Peter can’t be more than 25 years old and yet he’s in complete command of Bed 12 for the day, and of all the machinery and drugs that go with it – the medical equivalent of Captain Kirk on the Starship
Enterprise.

  Nurse Gloria is at the other end of the scale. Unusually for ICU, she’s an agency nurse, a large elderly woman who moves slowly and clearly isn’t at ease with all the technical gizmos that surround his bed. When she comes on duty during one of Simon’s worse evenings it sets off all kinds of alarm bells for me. However when I return at 7am Simon is neat, tidy, and much more peaceful than the evening before. I approach Nurse Gloria, who is hunched over the computer alongside him, typing up her overnight report with two fingers. “How did you get him so calm?” I ask. “I don’t like all these artificial contraptions,” she replies, “so I just gave him a good wash with soap and water, and settled him down.” She admitted that she’d also done some dancing during the night for the emaciated young man in the opposite bed “because he likes music, and it made him laugh.”

  It’s tempting to get over-attached to the nurses, especially when I spend most of a 12-hour shift one-on-one with them. The manager in me can see that the staff nurses are alert to the risk of distraught families transferring their emotions onto their team, and of the staff themselves becoming emotionally over-involved. This may be one of the reasons why the ICU team revolves constantly around three different wards: two at St Thomas’, and one at nearby Guy’s. At first I am gutted when Jenny, Ed, Peter and Rick appear to desert us. However I quickly learn to relax and keep an open mind as other nurses with an equally dazzling blend of warmth, skill and kindness arrive to take their place.

  Inevitably there are exceptions. Only once do I ask for Simon’s nurse to be swapped for someone else. It is a particularly bad day for him, and my heart falls when a young male nurse arrives for the morning handover. I remember him well for chatting about cycling while leaning over Simon’s unconscious body and for waking him up to clean his teeth just as he’d fallen into a badly needed sleep. Everyone has their slack moments, and in other wards these would hardly be cardinal sins, but in ICU I’ve come to expect a higher level of observation and sensitivity.

  On another occasion, I am shocked to see two young agency nurses at our end of the ward chatting with each other and sharing a bag of crisps. Again, my standards have been set very high. ICU nurses work a heroic 12-hour shift, with half an hour for lunch and—if they’re lucky—two short breaks for tea or coffee. They’re not allowed to eat or drink anything at the bedside, so the takeaway drinks and snacks that sustain so many of us through a long and demanding working day are off the radar.

  Some of the nurses are happy to give me minor support tasks, such as washing Simon’s hair with a special shower cap that is filled with shampoo and heated up in a microwave, like the end-of-meal towel in an Indian restaurant. On other occasions I prove a useful source of information about their patient. One morning I arrive to find the nurse clearly in distress. “I’m so sorry, your husband’s front tooth fell out when I was cleaning his mouth this morning.” She was shocked to hear that this had also happened a few months previously on a street in Mexico, and that Simon had simply wiped the wobbly crown down and put it back in his mouth.

  While the ICU consultants are warm and approachable, the other consultants who visit the ward from time to time rarely acknowledge or speak to me. Wearing white coats and accompanied by a respectful retinue of medical students they sometimes appear more interested in the illness than the patient. Dr Jones the senior ICU consultant is characteristically relaxed about this phenomenon. “They’ll come up with all kinds of ideas,” he told me, “but here we’re simple folk, just trying to look after your husband until he gets better.”

  To an observer, the fact that the ICU consultants rotate around the wards on a weekly basis is both an advantage and a disadvantage. It means that I am constantly building new relationships, usually later in the week when a consultant has settled in and is less busy. I feel it gives me more of a role in providing continuity about the more intuitive aspects of Simon’s care and ensuring that his background and personality are part of the picture. It also means that there’s a fresh mind and perspective on Simon’s case each week, and if I have less rapport with a particular consultant I know they will soon pass on.

  I’ve been advised that it’s best not to get involved in the details of Simon’s care, but as our doctor friend Carolina warns me one day across the bed, “You’re going to become an expert on things you never wanted to know about.” I’ve found it impossible not to keep my own mental log of his sedation levels or to take my eye off the throbbing iridescent lines on the monitor above the bed, and I’m getting used to shorthand such as SATs and CRP. “You’re either medical, or you’ve been here too long,” a registrar says to me one day. “Too long!” was all I could reply. However there are also days when I need to remind myself to be humble: I may know Simon better than anyone else here, but I only understand a fraction of the treatment that he is receiving.

  Coming back from lunch one day, I bump into one of the doctors from that first evening in A&E, whom I remember as being particularly kind. To my surprise he recognises me. “I’d never want to go through what you experienced that evening,” he says. Why do I find that so comforting? I wonder to myself. Partly because it affirms the intensity of the experience. It’s also because that doctor was willing to transcend personal and professional boundaries and to speak to me from the heart as a fellow human being. For him it may have been a small gesture, but for me it is one of the special moments that help me keep going in this stark landscape.

  CHAPTER 25

  The blanket

  Each day I wake at 6am, put on a cotton sundress (because it’s so warm in ICU) and my sparkly flip flops (comfy and cheering in the long corridors), pick up my backpack (stuffed with everything a girl could need for a day on the ward) and get on my bike. At every red traffic light, I wonder if my husband will still be alive when I arrive at the hospital, and if so, in what shape. Even though the wind now seems to be blowing in our favour I have enough experience of intensive care to know that the prognosis can change in an instant. Although I have permission to ring the ward from home, if I start doing that I fear the gaps between calls would drive me insane. Strangely, it seems easier to take the whole night off.

  Except that this morning is different—completely different. As always, I climb the stairs to ICU 1, gel my hands and wait for the buzzer that opens the double doors. I continue past the Relatives Room, down the main corridor, and turn right to Bed 12. And there in the corner is my husband—sleeping! Peacefully, naturally, curled up just as he would be at home! “I asked if he was cold, and he nodded, so I put a blanket over him,” explains a new nurse called Marian Most people in ICU are too ill for blankets, and they’re made of a thin and comfortless cotton fabric chosen for its ability to survive a high temperature wash—but still, a blanket! Simon is also snoring gently, for the first time in more than four weeks.

  In some ways it feels matter of fact, even an anti-climax. My husband is there in bed, he’s been perilously ill, now he’s regaining consciousness, and at some point he’ll come home again. One part of my mind is reminding me that he’s not out until he’s out, and that this is only a small step forward. Simon is still in ICU, home to the 2% most critically ill of all hospital patients, with a nasogastric tube, a catheter and a tracheostomy (the latter with its ‘cuff’ down, which is why he can snore). However another part of my mind is saying that we’ve needed solid signs of hope for a long time and is encouraging me to feast on this as nourishment for the journey ahead. Either way, the feelings of joy and optimism well up from deep within and can’t be suppressed.

  Today, for the first time since this all began, I have no place here. Simon may be coming back to us, but for the moment all he wants to do is to catch up on lost sleep. I had been surprised to learn that being sedated doesn’t count as rest in the usual sense of the word and therefore he is extremely sleep-deprived. Because he is lying quietly rather than thrashing about there are no pillows to plump or sheets to smooth, no wires to untangle, and no monitor to watch. Music no longer see
ms either necessary or appropriate. I am initially taken aback, even bewildered, to realize that my time is now my own again.

  It’s a good moment to catch up with family and close friends and to cautiously share the good news. Over a supper of spaghetti and red wine with Simon’s brother Tim we dare to discuss life after St Thomas’. Tim cautions me to get my head around the fact that our adventure has hardly started and it may become harder and more complex from here on in. Simon will no longer be neutral and inanimate: there will be mood swings, frustration, perhaps even depression. How will he relate to me? He may have been going through physiological pain, but mine has been emotional. How will we square that circle? For the first time I find it hard to get to sleep, perhaps because of all these new considerations.

  The following morning I arrive full of curiosity and excitement to find that Simon remains unreachable, but in a different way—he’s still asleep! When he sleeps for most of the day I have to remind myself that this is the best possible thing, however tantalizing it is for me. He has a particularly lovely nurse who excels at the emotional intelligence dimension of nursing, making him comfortable, and when he wakes up, telling him where he is and getting him to respond to some simple yes/no questions. At one point Simon gives her—not me!—his first beautiful smile. One of our friends has written on the Facebook page about his special smile, which made me realise how I’ve taken that and so many other things for granted over the years.

  In the half hour before I leave there are some delicious moments. Simon is lying stretched out full length on his back, eyes clear and limpid, hands behind his head, clearly listening along with me to the jazz singer Blossom Dearie. Then he sits up, not out of restlessness but to look around the ward. I show him the photos by his bed, and when I tell him that I have to leave now, he puts his first sentence together. The only word I can pick out is “cats”, but who cares? A world of hope in a sentence!