In Every Moment We Are Still Alive Read online

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  Callmer has brought two specialists with him into the little room in F21. A table and four plastic chairs occupy the whole space, the white walls are bare. The two young women seem afraid of me, they maintain a slight but nonetheless noticeable distance when they shake hands. Callmer asks if it’s all right that they take part in the conversation. Sure, I answer. How are you feeling, Tom? he asks. How do I answer that? Well, you tell me. I guess I’m okay, I say. You don’t have to be a doctor to see that you’re having a tough time: you’re charged with adrenalin and showing all the standard symptoms, dilated pupils, quick movements, eyes darting around in all directions. That sounds like what I’m normally like, I answer, otherwise I’d take offence at that. Tom, I’m only saying it so you don’t forget about yourself. Yeah, I got that, thanks. Callmer looks away and explains something to the specialists, pointing with his ballpoint pen at something in their files. A cold light from the fluorescent tubes overhead. I’ve already prepared myself that Karin may not pull through, I say. Callmer lifts his chin towards me, tucks his biro into his breast pocket, and says: Right now that’s not where we are. He leans back in his chair. Two deep folds of skin separate his jaw from his cheeks, and there’s dried blood on his throat from shaving. He scratches the corners of his mouth, then continues: As John said yesterday, Karin is with us here at CIC, she’s certainly ill, seriously ill, but she’s alive, Tom, and anyway I don’t know that anyone can really prepare themselves for something like that. Okay, I’ll rephrase that, I say. I’m choosing to make the assumption that Karin is not going to survive in order to prepare myself mentally; nothing is more frightening to me now than the idea of being surprised, I can’t handle it, it’s about having some semblance of control in a situation where I’m totally powerless. He rests his elbows on the table and looks curious. Do you work as a therapist or something like that? he asks. What? It’s not an unusual profession, he adds. Karin has been ill before, that’s all, I tell him. He looks down into his plastic folder, picks up a thick wad of notes, skims the pages, and says, while occasionally looking up at the specialists: AVM which was embolised, that was in the nineties, and then she had Gamma Knife radiosurgery in…2001. I was with her when she got the cyst, that was in 2004, I say. He keeps looking through the notes. It developed in the scar tissue from the Gamma Knife, I add. Was it surgically removed? Yeah, they operated, I answer. Do you know if it was done here at Karolinska? Yes, the surgeon was called Marsala, it was a massive cyst, grew rapidly. Taavi is incredibly skilled, we were students together in fact, anyway, well, and now this, poor girl…but the child is fine? Yes, she’s fine, thanks. What about Karin’s parents, how are they handling all this? They’re in shock, but they have each other for support, I answer. Callmer replaces the notes in the file and says: I’ve said it before, I’ll say it again, against this type of blood disease one has to gain time. He says nothing else that I haven’t heard before. They sit in front of me in a semi-circle, their hands on the table as if they’re preparing to grab me in case I collapse or make a lunge at them.

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  In Room 1, the nurses are changing the sheets. They notice me looking at the imprints of their hands, which stay on Karin’s body. She has so much fluid under her skin, that’s why it gets like this, says one of the nurses. I get out a little orange blanket from my bag. The midwives at Neo said I could leave it with Karin, it’s been with Livia, it has her smell on it, I say. They look astonished, and exchange a glance, but then help me spread the blanket over Karin’s breast under the unwieldy respirator tube. Did you get a sleeping tablet? asks the same nurse. Yes, thanks. Good, you need to sleep. They change the oxygen mask and calibrate the respirator. Persson appears in the doorway, in casual clothes: jeans, a windbreaker, a chestnut leather briefcase in one hand. He casts his eye on Karin, nods to the nurses, and says he’s had a response from the cardio X-ray. I can tell by the way he says this that something is wrong: What’s happened? Karin’s heart is struggling, she’s getting medication for that as well, he answers. So it’s her heart now? This is how it is, everything in the body is connected, if one organ starts going on strike it’s not unusual for others to do the same. Is it serious? She has what’s called a dilated ventricle on the right, it’s been stretched, it can’t function as it’s supposed to, which also affects the left ventricle, so we’re giving her medication to counteract the problem. What sort of medication? He seems surprised by the question but answers as calmly as ever: It’s called Levosimendan, it’s what you administer in situations like this. He puts down his briefcase, removes his glasses and polishes them with a corner of his shirt, then one of the nurses who has stayed behind says to me: Tom, if I don’t have time to come back before you go, goodnight, hope you get some rest. She also leaves the room, carrying the sheets. Are you making those notes for your father-in-law? asks Persson. No, I want to be able to explain it all to Karin if she wakes up. You know, Karin can see our medical reports any time, he says. I know that, but that’s your version, I point out. He peers sceptically at me. It’s stressful taking notes all the time, Tom, you need to rest as well, remember, eat, sleep, and get out of the hospital as often as you can. But I have a baby lying up there, I can’t leave the hospital, I answer. He puts on his glasses, picks up his briefcase, and says on his way out: Just a walk in the park at some point in the day, you can allow yourself that. Later, on my way to Neonatal, I take a detour and stop at the sculpture, those large, colourful glass eggs I saw from the window of Family Room 1, now shining in the dark. On a copper plaque it says the work is entitled To Mother.

  Stefan has brought twelve pieces of sushi with him. He scrutinises my gym shoes while I sit eating on the guest bed. I stare at the brick wall outside the window. Tompa, he says, those shoes of yours reek, I can smell them from here. I don’t think anyone cares, I answer. Didn’t you bring a spare pair? No, I don’t have any others. He washes the insoles under running water and puts them on the windowsill to dry. Livia, she’s so goddamn lovely, Tompa, she looks like you, has your mouth. I think she looks like Karin, especially the mouth. Yeah, I guess she does, he answers and lies on the other bed. What was that tablet the doctor gave you? he asks after a while. I don’t know. Can I have a look? he says, reaching out. I give him the tablet with a bit of the foil casing. He inspects it under the bedside lamp. Shit, Nitrazepam, he says. Is that good? I ask. It’s what my clients call a dry booze-up, it’s good shit, Tompa. I don’t like his nickname for me, but Stefan is the only one of my mates who calls me that, he’s also my oldest friend, we’ve known one another since we were babies; when he says Tompa it’s with a voice that resounds through my whole life. I lie on the guest bed but I’m so tired that I don’t have the strength to get up and fetch some water. I chew down the sleeping tablet.

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  Stefan yells behind me: Run, Tompa! He sprints behind me, carrying my gym shoes. I hit the entryphone button. Stefan is out of breath. Put these on, Tompa. He puts the shoes down and steadies me. Inside Room 1 I can see nothing but white, light blue, and green uniforms, Stefan holds on to me by both arms. On the white polished floor by the metal legs of the bed among all the orthopaedic shoes I catch sight of Livia’s orange blanket. Then I recognise a straight, strong back from Emergency Room 11. I call out, or rather Stefan calls out: What’s going on? Kinch turns to us: We’re flat out here, he answers. One of the nurses helps me to a chair. I took a sleeping tab a couple of hours ago, I tell the nurse, I’m just out of it. Crap, okay, wait here, I’ll fix it, just sit there, he answers, then returns holding a small silvery bag with a nozzle at the end. Its contents are like jelly. Get that down you, he says, pressing firmly on my shoulders. He has a heavy, square body, and flowing locks. He reminds me of a hockey coach I used to have. I hear Stefan’s voice: Tompa, I’ll wait outside. Persson sits down in front of me, he has hurriedly thrown on a white doctor’s coat over his normal clothes. His mouth and eyes are scrunch
ed up, he holds on to the chair and leans back. Tom, it’s good you came so quickly, Karin’s condition has deteriorated in the night, first her circulation and then also her respiration. Okay, okay, is it serious? Tom, we can’t wait any longer to start the ECMO treatment. He pats me on the arm and adds: We’re in a difficult situation here. Okay, thanks. The nurse gives me a glass of orange juice and a cheese sandwich. He stands next to me muttering to himself while tenderly squeezing my shoulder: Shit, oh shit. Kinch takes my hand and gives it a shake. So I understand this is your wife, he says. She’s my Karin, right, I answer. Holger, ECMO Unit, he says. I’m Tom, sorry, I’m so goddamn groggy. Kinch lets go of my hand, he stares at me as if he has just noticed something in my eyes. He took a sleeping tab a few hours ago, the nurse interjects. But you know where you are and what’s happening? asks Kinch. I know where I am, but not what’s happening, I answer. Your wife has lactic acidosis, ninety saturation with ninety-five in oxygen supply, serious hypoglycaemia, low blood pressure despite medication, haemodynamically worsening despite medication, we now also suspect lysis of the red blood cells. Sorry, I didn’t follow a word of that, I say. He shakes his head: Tom, I’m the one who should be apologising, I was told earlier that you wanted detailed information, which in all honesty I just don’t have right now. Let’s try this, then: your wife is in such a bad state that we’re here from the ECMO Unit, okay? Okay. What’s going to happen now is that we put your wife on ECMO, we have to do it right away, it can’t wait, one needle in her groin and one in her throat, we take over the entire gaseous exchange, then we’ll bring your wife across to our unit, okay? Okay. This must feel so unreal to you, he says, peering at me over the top of his glasses. Earlier you told me ECMO was Plan B, I answer. He puts his hands on my knees and says: We’re in proper hell now, you’re right in the middle of it. Thanks for being honest about it, I answer. He stands up and goes back to the circle of doctors. Two people in surgical scrubs come into the room. The nurse comes and takes my glass. Who are they? I ask him. That’s the perfusionist, he’s specially trained in ECMO, and she’s the operation nurse, he answers. They’ve brought a sort of multi-level trolley with a computer on it, a bit like the dialysis machine but more complicated, with tubes, pumps, cylinders, monitors, displays. One of the doctors speaks up: Ready for cannulation.

  I peer up at the beige suspended ceiling in the corridor, tiles of mineral wool; in the doorway of an adjoining room stands a man wearing a hospital uniform much the same as those worn by Karin’s nurses. He stares at me. Next of kin can’t stand in the corridor, he says at last. Okay, and who are you? Does it matter? I haven’t seen you before, I point out. He scratches his throat, steps into the corridor, and glances over towards Room 1. Is that your wife in there? Who are you? I ask. He changes tack, suddenly seems a little ashamed of himself and starts explaining that he’s doing a bit of overtime, but is interrupted by voices in the anteroom, the perfusionist, Kinch, and another three people come out, and when I look back at him he’s gone. Kinch is holding an internal telephone, which is ringing and blinking. He comes up to me and says: This is very embarrassing, we have a bed shortage in the ECMO Unit, I was just told about it, but not to worry, we’ve spoken to TICC, they have space, they are well accustomed to dealing with patients in ECMO, excuse me. He shuffles off and answers his telephone. You’re standing up, says the specialist. Yes, but I took a sleeping tablet a few hours ago, I answer, I feel as if I’m wearing a diving helmet. Maybe it’s not just the tablet? he points out. TICC? I ask. Yes, Thoracic Intensive Care Clinic, he answers. Chest and things like that? Precisely, heart and lung and related organs, he answers, adding: They’re highly competent, one of the most prestigious units in Sweden to work in. Kinch positions himself between us and, while hammering the internal telephone against the palm of his hand, says: We have to bring her through the basements, it’s the only way. It must be a kilometre to TICC, says the specialist. Kinch looks at me when he says: Moving her is not going to be a walk in the park, we have to push your wife through the underground passages with ECMO, medicine bags, oxygen, the whole lot, TICC is at the other end of the hospital. It sounds far, I say. It’s not only that, it’s also a priority not to bump into anything, he says, and while Kinch frets about the size of the lifts and the tight corners in the basement passages, Sven comes striding down the corridor, his idiosyncratic posture making his back flex slightly as he walks. He almost trips up on a floor-polishing machine. He doesn’t see me. Stefan is moving along behind him with his hands held out. Without introducing himself or any other preamble, Sven launches into a monologue on an article that Måns has found on the Internet about the use of dichloroacetate in the treatment of lactosis in children with metabolic illnesses. I grab Sven’s arm. His heavy body feels impossible to budge. Well, it seems we’ve read the same article, answers Kinch. Sven wants to go on talking about dichloroacetate and I notice Kinch is getting impatient. Stefan doesn’t know what to do with himself. I think they know what they’re doing, Sven, they’re doing everything they can for Karin, I say. He ignores me. Stefan and a nurse help me lead him away down the corridor; after a few metres I realise he’s gone. You can come in now, the specialist calls out to me. It’s hot and stuffy in the room. The ECMO cannulas are transparent, one of them is hanging from Karin’s throat just above the collarbone, another is coming out of her groin, they’re as thick as garden hose, there must be many litres of blood flowing through them. I lean forward and push my way through a wall of hips in front of me, I pick up Livia’s blanket, shake it off, and put it in my back pocket. Where’s the husband, I suppose you’ll be wanting to come with us? Kinch calls out. Yes, please, I answer. Are you feeling more awake now? he asks. Yes, I am. He asks me to hold on to the cannula jutting out of Karin’s groin. Don’t you let go of that, if we walk into anything and knock the cannula it’s all over, instantly, he says. The cannula is as warm as her body.

  Kinch steers the bed down the corridor while holding on to the throat cannula, which is partially taped to the side rail of the bed. A nurse pulls the infusion rack and keeps a hand on Karin’s oxygen mask. Another nurse pushes along the ECMO machine. Catheters are trailing and lying all over the bed. Carefully, the nurse rocks the ECMO machine from side to side to manouvre it between the oxygen tube and the lift doors, there’s no space for him inside, and he’s just sprinting off towards the stairwell when Kinch calls out for him to wait. The nurse runs back and jams his arm between the closing doors. Kinch leans over Karin, and says: We can’t get to the buttons, you have to run down to the basement and call down the lift from there. The nurse has broken into a sweat, he’s complaining about his fitness when the doors open in the basement. Slowly he coaxes out the ECMO machine and then starts tugging at the bed. Wait, hold on! Kinch calls out and lifts the urine catheter, which is sandwiched between the bed and the side of the lift. The floors in the basement are made of rough concrete, there are guard rails along the walls, sometimes the floor slopes down and sometimes up, but mostly down, some of the passages are so narrow that we can barely get through, others are as wide as dual carriageways, even though we’re creeping along step by step we have to stop for a breather every ten metres, Kinch glares up at the traffic mirrors on every corner, his temples shiny with sweat, all the time we run into doctors or messengers on kick scooters or janitors on bright yellow trucks towing a line of wheeled baskets. Stop, the nurse cries. She’s suspended with outstretched arms between the oxygen mask and the infusion stand, which has got stuck in a crack in the floor. Kinch throws himself at the oxygen mask. Damn it, he yells. My hand, grasping onto the cannula, has turned white, my fingers are burning. On the ceiling are ventilation drums, cable ladders, copper tubes, there’s a whining of capsules in the pneumatic tube system, the basement seems to be getting more modern, the floors look newly painted in light grey hues, the walls are white and clean, sturdy pillars, we pass a pressurised chamber, emergency supply cupboards, a seminar room, specialists and students, changing rooms, steam issuing
from laundries, medical and surgical archives, fire doors with explanatory signs on them, from time to time daylight entering through gaps in the ceiling where one can see the sky between steel beams, and then after walking for about an hour the floor starts sloping upwards quite steeply and we have to push the bed with our bodies, the passages getting colder, in places the beams flaking with rust and paint, it gets warmer again, the air turns drier, whenever we turn into a new stretch of corridor Kinch punches a button to start a flashing siren light, people move out of the way and stare at us, the trucks apply their brakes and reverse, on a couple of occasions Kinch stops to make a telephone call, at other times he yells loudly into the corridors: Emergency patient transport! I have not dared to look at Karin even once since we left F21. Opposite the Thoracic Intensive Care Clinic is an open refuse room, there’s a stink coming from some brown sludge running onto the floor and dripping into a drain. The bed lift is tiny. Kinch and the nurses swear as they wiggle the bed to get it out. The nurse who was struggling with the ECMO machine stretches to press the button. Good luck now, Tom, he says before the doors close. I don’t know his name, I never looked at his name tag, I didn’t ask either, and I’m ashamed about it and I’m ashamed that I didn’t have time to say thank you. Your wife will be well taken care of now, says the other nurse. Thanks, but we’re not married, I answer. Oh, I thought you were. We were thinking of getting married before Livia came along, I say. When was your daughter due? Early May, I answer. Two doctors and two nurses are waiting for us on Level 4. On a lime-green steel door is written: Welcome to the Thoracic Clinic. Could someone help me? I ask. I’ll take over, answers one of the doctors. Only now that I can drop my arms as I jog along next to the patient bed do I dare look at Karin, her nails, the colour of her hair, her ears, eyebrows, eyelashes, nose, and that little indentation in her skin by her right nostril, that’s the only thing that’s still the same, but it’s enough, it’s Karin. The section is called N14 and we’re going to Room 2, one of the doctors says to me. I write it down in my pad without stopping. I am left standing in a long, windowless corridor, I hold the door, five people help move Karin to an intensive care bed. She faces a large window, which is slightly open. I see the scar on her stomach for the first time. The nurse who helped us get through the basement pushes the bed into the corridor. Something on the sheet looks like a mixture of excrement and blood. She looks at me. Thanks, I say. She embraces me. The doctor in charge must be two metres tall, with maniacal eyes, he charges back and forth between Karin and a computer. Tobias Sax, it says on his name tag. He has a powerful voice: Talk to me, what’s our status here? ECMO and oxygen working well, someone says. A nurse squeezes Karin’s lower arm and calls out: Acutely oedematous, bleeding from punctures and tubes. He yells out: Top priority now drain off fluid, drain off fluid, come on go. In the corridor a few metres behind me one of the older doctors from TICC stands talking to Kinch and Callmer. I am so happy to see Callmer that I call out ‘hello’ and raise my hand towards him. He’s immersed in their conversation. He looks grey and seems tired. Sax lifts the material covering Karin’s hips and studies the cannula in her groin. We have to correct the venous cannula, we must have a flow of about five litres, he calls out, and hurries back to the computer. I stand hidden behind the door and look out of the window through its encapsulated steel mesh. I can’t see if Sax is yelling at the staff in Room 2 or into a telephone: Extraordinary doses of vasoconstrictors, acute circulatory instability, multi-organ failure, extensive bleeding from all orifices, membranes, infarcts, come on people, the patient is basically dying on us here.