Wired Up

I just dropped Marc off at the Cheshire and Merseyside Treatment Centre behind Halton Hospital to have an operation on his foot, so I am channelling my nervous energy into writing next week’s blog post. He is having a fairly major (in our eyes anyway) procedure done, which will hopefully put his feet at less risk of breaking down due to pressure sores because of his clawed toes. He is only a day case, so he won’t need to be there overnight, but just entering a hospital makes me uncomfortable these days, so dropping him off was difficult, to say the least.

Under pressure

The toes on his right foot are clawed. (This is jumping ahead quite a long way from the place the blog is currently up to.) This is because his feet were deprived of blood supply during his initial trauma, so his toes became necrotic and were actually at risk of being amputated for quite some time. He has struggled with them ever since he came out of hospital and has already lost half the big toe on his right foot and a little off the top of the next toe. The problems he has had with the toes have meant that he had ended up with the remaining toes on his right foot curled over, thus taking all the pressure because he walks on the tips of his toes rather than the flat sections of toe he should use.

This has already led to one wound on the tip of his second toe not healing for almost nine months, and he risks constant battles with the same issue if the consultant does not operate. The operation will remove the cartilage from between the middle bones on the three central toes and put wires down the centre of each one to straighten them. The wires will remain in for six weeks, during which time he will have to keep them elevated and avoid all infection. When they are removed the toes should be straight, therefore causing fewer issues as Marc won’t be effectively walking on the tips of his toes all the time.  He will never be able to bend his toes again, but at least he shouldn’t have the same ongoing problems he has been experiencing for the past two years.

A clean, safe environment

So I drop him off. Knowing, in the logical part of my brain, that he will be in and out of surgery within an hour. That he will be home with us tonight. That the consultant does operations like this every day, that they are second nature to her. That the hospital is a clean, safe environment for him to be in, and that he needs this operation.

But that doesn’t make it any easier.

We set off at 7.10am, leaving the children with Marc’s mum, who is going to take them to school. The children, as I have said before, seem to sense that something is not normal, that the adults in charge of them seem somehow more stressed than usual today. They make their own breakfast and get dressed quickly today, instead of needing to be called several times, nagged and shouted at until they make it downstairs, fuzzy headed with sleep still and grumpy for their breakfast.

The dangers life can bring

I wonder what the effect of this is on them. They seem perfectly normal, biddable, smiling their goodbyes at us as we leave, but I wonder what is going on in their heads. Particularly Daniel, who asked his dad exactly what time his operation was because he is by nature very precise and needs to know the details. We have not scared them with any statistics about the risks of anaesthetic, but still, he knows what happened the first time his dad ended up in hospital, and what could have potentially happened. He is now nine, and has a far better idea of the dangers life can bring.

We drive down the back roads towards Runcorn, always extremely quiet, but even more so, since rush hour has not yet begun. It is a beautiful, sunny morning; under other circumstances we would be happily joking and laughing together. We are not particularly tense, not outwardly at least, but the atmosphere is different. The journey to the hospital only takes fifteen minutes and we are soon pulling into a space in the car park. We walk across to the entrance, moaning about the unfairness of car parking fees for people who are sick and need to attend a hospital. Upon entering the building, it seems almost deserted.

An alarming amount of people

A voice from behind startles us, and for a moment we are confused, but it turn out to be the man who should be behind the reception desk. He smiles and politely gives us directions to the check in desk on the second floor. We remark that the building is a new one and is very clean and modern, as we decide to take the stairs, not the lift. Marc jokes about the fact that he will need to use the lift later on, and certainly won’t be managing the stairs the next time he moves through this building. We make it to the second floor, where there is a waiting area and we are told to sit down until called. There are already an alarming amount of people here, despite it being so early. Clearly no one can sleep in on the day of an operation,  no matter how minor.

Marc is called over and checks in his details with the nurse, then returns to sit with me. He has been put first on the list, which means he will be in surgery at 8.30am. I know this is special treatment of a kind, because of all he has been through, and I am glad of it. A few minutes later he and another patient are called by a male orderly who will take them downstairs to the ward. I turn to leave, but the orderly insists that I come with them “to see where he will be”. He is extremely friendly and professional, and puts me at ease. We make a joke about the size of Marc’s medical notes in comparison to the other lady who is going down with us. I’m not kidding: they are ridiculous. He has probably has a 30cm depth of files, all bound up with elastic bands, and every medical professional we see marvels at their size.

Horribly familiar

We enter the ward and put some hand sanitiser on. The orderly takes the female patient to her bay. While we stand and wait for him to return, I begin to notice all the ‘hospitally’ things. The board at the far end of the space, with all the patients names written up in marker pen. The nurses’ station in the centre, the hub of all activity. Various bays leading out of the central area. A doctor wandering around, checking the board. Blood pressure monitors and cuff on a stand nearby. It is all horribly familiar and I shudder. Marc knows exactly how I am feeling.

Then the man returns and ushers Marc and myself down to a bay at the far end. It is well lit with large windows and has four beds, one of which is occupied already. The bay itself is even harder for me to inhabit: the hospital beds, the large blue tall backed chairs beside each one, the board behind each bed with the relevant patient and consultant name written up, the basic hospital gown lying on the bed, the type Marc wore constantly for such a long time and which I came to despise, waiting for my husband to wear again. I don’t think he is so happy about the thought of donning the ugly gown either, but he doesn’t say so. Instead, he sits on the chair to the side of the bed and waits. When the nurse, Gaynor, enters a moment later, he smiles a greeting, his usual friendly self.

Reassurance

I interrupt before she can begin and ask what the procedure for later is. Whether I need to call them, or whether Marc will be able to text me once he is back in the land of the living. How long I can expect the procedure to take. How long it will be before I hear from him. She reassures me that he will be first down, so probably back on the ward by around 10.30am, and will be able to text me then and let me know he is ok. To give me further instructions as to when I can pick him up and what kind of care he will need afterwards. I don’t stick around. The first time Marc had a toe operation I naively assumed I would be able to stay with him, for some of the time anyway. I know now that I am not welcome. That relatives get in the way. That I simply need to leave, and come back later when it is all over.

So I kiss and hug him goodbye, trying to convey everything to him in that hug. That I am rooting for him. That I will be thinking of him all morning, until I know that he is safely back from the operation. That I love him with all my heart. That I know he is going to be ok. That I know he is strong now, stronger than he has been for the past two years, but that I am lending him my own strength too. Leaving it behind me at the hospital, to help him through. All through a hug which lasts around 2 seconds because there are people observing us, and a nurse who has a job to do.

Steadying myself

Then I turn and leave. I pass the lovely orderly on my way out, and share a silly, flippant remark with him. I press the green exit button on the ward entrance and pass through the door, opting again for the stairs. I return to the ground floor, which is waking up a little more now, more people milling about, the car park starting to fill. And I make my way back to the car, smiling as I pass a man on his way in to the hospital, wondering if he will be having an operation today too. I get into the car and I am shaking, and close to tears, taking deep breaths to steady myself, determined not to cry.

I have had no breakfast, and despite being on a diet where my usual breakfast is a small bowl of branflakes, I drive to the McDonalds close by (going the wrong way first and having to retrace my route because I am not concentrating properly) and drive through, buying three hash browns (my guilty pleasure) and a cup of tea. I park in the car park outside and make the tea, consuming a hash brown while I do so. Somehow the drive to McDonalds and the conversation I have with the server over the intercom calms me a little. I know I can’t manage face to face contact yet though. At least I don’t feel like I’m going to cry anymore.

The same nervous wait

Then I drive home. And start typing this. Since I got back at 8.20am I have received several text messages. One from Marc’s mum, who has safely dropped the children at school for us, and who is now going home to endure the same nervous wait that I myself am experiencing. One from a friend who has seen on Facebook that Marc’s operation is today, offering her good wishes and telling me to just ask if I need help with lifts to clubs over the next few weeks. This is in addition to several I received last night offering similar help with meals, lifts, childcare… the list goes on.

And a couple from Marc, telling me that he has been prepped and is ready for the op. That he has been warned again that it is essential that he keep his foot above his heart and avoid infection if he wants to keep all of his remaining toes. That he loves me and doesn’t know what he would do without me. And the last one, saying he will ‘see me on the other side.’

The longest post ever

I know now that he is in that operating theatre as I type At 2176 words, this is by far the longest post I have ever written for my blog, and it is completely fuelled by nervous energy. I am waiting for my good friend Kate to come round so that we can go for a long walk and then have a cup of tea to pass the time and distract me from my thoughts. She knows that I will struggle to get through the morning without being driven insane by worry. I will probably go and make another cup of tea now and wait anxiously for 10.30am to arrive, upon which point I will panic if Marc hasn’t sent me a text immediately.

But I know we have been through worse, and we will get through today, as we have so many other trials, together, with the support of family and friends, and come out eventually all the stronger for it.

See you on the other side.

Independence

My past few posts have focused on the difficulties (and eventual triumph!) of Marc learning to breathe independently again, and while this took up an awful lot of our time and energy during those weeks in July, he was having to deal with plenty of other things too. The other issues were perhaps the reason Marc’s breathing took so long to return to normal: he had so much going on with him health-wise, healing was an interminably slow process. I imagine if you are in hospital for a single ailment, your body is usually able to heal itself fairly quickly, as it only has one thing to concentrate on. But Marc had multiple things going on, many of which were not visible to the naked eye, but internal issues. His body was clearly having a hard time trying to make all the different parts of him well again.

Real life

Outside of the hospital, real life was still going on. I had to think practically about holidays we had booked, and set about the process of cancelling them. Luckily, we had been to Disneyland Paris at Easter, so our main summer holiday was a modest week in a cottage in England, which I had booked through a friend of a friend. I contacted her and she was wonderful, giving me my entire deposit back in full and wishing Marc well with his recovery. We also had a large family weekend at Centreparcs planned with my parents and sister, and I had an agonising decision to make about whether or not any of us would go, but more on this later – it’s a whole other post.

Finally, we had booked a single night in a hotel in Windsor and were going to go to Legoland as a family for the day to celebrate my birthday. It quickly became clear that there was no way we would be able to do it, so I contacted both companies to see if I could cancel. I have to say that Premier Inn were amazing. We had booked a room on a ‘no refunds, pay in advance’ kind of basis, so I emailed them with no real expectations of getting our money back. I received a reply from them within a couple of days, explaining that although they didn’t usually give refunds on these types of bookings, since the circumstances were so severe and unexpected, they would make an exception and refund us the money. We often use Premier Inns, and after the consideration they showed for our situation that July, I would certainly use them time and time again.

Not so understanding

Legoland were not so understanding. We had free tickets for the day there, linked to our season tickets for the Legoland Discovery centre in Manchester, and had therefore not paid for them. I asked Legoland if they would honour the tickets at a later date, since there was no way that Marc would be able to go to a theme park any time soon, his health being as it was. I wasn’t asking for any money back, just the chance to extend the free tickets so we could use them later, once Marc was recovered. I received a reply saying that my message had been forwarded to someone else in the company, and a few days later an email which said that the free passes would not be honoured after our annual passes to the Manchester site ran out, which was only a couple of months later.

I knew without any doubt that Marc would not be fit to travel to Legoland, let alone go on the rides, within the next two months, so I let it go. I did however feel disappointed that such a large and popular theme park as Legoland could not extend us the courtesy of experiencing a fantastic day out at their park once Marc was better. In reality, Marc was not able to attend anything like a theme park until the summer of 2015, a full year later, and even then it was a difficult day for him. Still, we celebrate little achievements like that now, as we remember how impossible it would have been for Marc to manage such a day out a mere two years ago. Managing the cancelled trip to Legoland would have been something of a milestone for us.

A nice surprise

At some point after my birthday, a funny thing happened. Whilst Marc had managed little preparation for my big day by June 19th when he first became ill, it turned out that he had begun to think about my presents. One day I visited him at the hospital only to find him desperately trying to tell me something. He still couldn’t speak at this point, and I can’t remember how he got me to understand what he wanted, but he managed to convey the fact that he had bought and hidden one present for me. He wouldn’t (or perhaps couldn’t) tell me what it was, but told me to go home and look in the cupboard over his wardrobe (our usual hiding place) for an Amazon box. He was smiling as he managed to get the message across, like he was Father Christmas with the most exciting secret present to deliver.

I think perhaps he was excited because of the normality of it all. It was absurd, him lying helpless in a hospital bed, remembering something he had done before disaster struck, and the idea of me going home to find a secret present he had bought cheered him immensely. He must have felt like, in the midst of the surreal surroundings which had become some kind of a temporary ‘home’ to him, there was a small chance of returning to normal at some point.

Insanely happy

When I got home, I went to his wardrobe and found the Amazon box. Inside it was a box set DVD of ‘Band of Brothers’, a series I had been wanting to watch for ages. It wasn’t wrapped, for obvious reasons, but just the thought of my ‘old’ husband, the one who was capable of buying me thoughtful gifts, the one who knew me really well, the one who usually took up half the slack in life so it didn’t all have to rest on my shoulders, made me insanely happy. When I visited him the next day I told him that I had found it and it clearly made him happy too. We agreed that I would not watch it but instead, would wait until he was home and well enough to share it with me.

I know to this day how hard he finds it that I have had to shoulder the major burden of looking after everybody when he prides himself on being a truly equal partner in our marriage. On Friday of this week he goes in for another operation on his feet, hopefully the last one, to alleviate some of the pressure he constantly has on the toes of his right foot. He will need several weeks of recovery time where he will be unable to drive and need to lie with it elevated, resting it and allowing it to heal. He has already said to me that he hates the amount of pressure put will put me under, and how he despises not being able to help out around the house like he usually would.

So grateful

We have had a huge number of people offer their help. Family, friends, neighbours who all know our history have told us to let them know what they can do to support us. They have offered to take the children to their clubs, to keep me company while Marc is having the operation, to look after Marc or the children so that I can continue to go to work as usual, and to pick up shopping or prescriptions for me if I can’t manage it. Anything to make things a little easier for us. We are so grateful, and I know already that we will accept many of these offers of help, and that we will attempt to repay them in the future once Marc is well enough.

But I know Marc finds it difficult and will feel ‘helpless’. All I can do is reassure him. That I don’t mind. That, this time, I know it will be temporary and that he just needs me to take care of things for a little while. That, as long as he is ok, I can cope with anything. And that it will make our weekend away together in January (a present for my 40th birthday) all the sweeter, knowing that he is well and healthy and we can finally find the time to simply enjoy each other’s company again.

The Battle to Breathe

As I write today’s post we have recently returned from our first holiday abroad since Marc’s illness. We spent a gorgeous fortnight in Menorca, doing little other than swimming, resting, reading, eating out and generally enjoying each other’s company. The children did fight, and on occasion I became frustrated with them, but all I had to do was remind myself that sibling arguments are part and parcel of normal life, and two years ago life was so far from normal that sibling arguments did not even register in my thoughts. Thinking back, I don’t remember the children arguing at all during Marc’s first few weeks in hospital, as though they knew I couldn’t have dealt with it. It almost made me enjoy their childish disputes during the holiday (almost – not completely, I hasten to add!)

Following the drama of Marc’s sudden drop in heart rate we fell back into some kind of uneasy routine again. The summer holidays began (not that I really noticed – I had been off since Marc fell ill) and the children were at home more. My life was filled with making sure they were cared for, visiting Marc and little else. The pressure of visiting became very intense due to the fact that mostly only Linda and myself were visiting Marc during this period. He was still struggling to master the Drager machine and breathing independently, so visits were quite stressful. Further complications with his heart rate and temperature meant the nurses often had to take him off the Drager to allow him to stabilise, but this was very frustrating as it only delayed the time when he might be off the ventilator altogether.

A step in the right direction

He did begin to manage slightly longer sessions on the Drager, which was a move in the right direction. The nurses who cared for him each day formed a huge part in spurring him on to increase the amount of time he spent on the breathing circuit every day. Like everything else with Marc’s recovery, I had naively assumed there would be an upwards trajectory to his breathing progress, with him managing an increase, however slight, in the time he spent breathing independently each day. I was wrong. One day he would manage up to six hours on the Drager, the next his heart rate or temperature would be elevated and he was back down to two or four hour sessions again.

His nurses tried all manner of tactics each day to help him, from distracting him by making him laugh, to ‘tough love’ (‘Keep going Marc – you have to do this!’) I’m certain I was not the only one frustrated with his lack of progress. He seemed to be quite depressed and when I asked him about how he had slept as I greeted him each day, he would shake his head to convey how tired he was. The doctors prescribed a number of different sleeping pills and anti-depressants to try and elevate his mood, none of which seemed to make any difference. We were all convinced that a more positive attitude would help him make more progress, but I felt helpless as to how to help him feel happier. It was clearly something he had to do for himself.

I found myself often staying later, after visiting time, because I knew he found it easier to manage his sessions on the Drager when I was there with him. The nurses were wonderful, and always let me stay that extra half an hour while he completed the allotted period of time. I would sit next to him, chattering inanely about whatever had happened that day, trying anything to distract him from his pain and exhaustion while he worked his lungs. I would come away from these visits completely shattered myself, glad that I had helped him but the effort which I had put into keeping him going draining my own dwindling stores of energy.

Clock watching

He would often clock-watch, knowing exactly how much time he was supposed to spend on the machine and counting down the minutes until his nurse would put him back on to the ventilator. He knew then that breathing would become easier as the larger machine supported him and took over the job. A particular nurse, Erica, was wonderful with him and told him straight that constantly looking at the clock was not helping him. Breathing needs to be an unconscious activity, and if you have to constantly think about doing it then it isn’t going to come naturally. By desperately looking forward to going back on the ventilator, he was effectively looking forward to giving up on breathing for himself. Erica would purposefully pull the curtain across so he couldn’t see the clock, and instructed me not to tell him the time if he asked me.

Around this time I was still finding running really calmed me. Short sessions, no longer than around twenty minutes at a time, but each one helped to rid me of some of the stress I felt over Marc’s situation at this time. I found some days I would push myself to run faster, further, and when I was struggling and wanted to stop, to slow down, to walk, I pushed myself to continue with the thought that this was what Marc had to do too. The thought of him fighting to breathe by himself for longer and longer periods each day, despite the pain it caused him, allowed me to run further and faster. An as an added bonus I felt like I was silently supporting him, though he was unaware of it, by conquering my own challenges.

Less of a strain

Gradually, over the period of around three weeks, he managed to build up to longer and longer sessions on the Drager. Eventually he was doing two four hour stints on the machine a day, with a rest in between, then eight hours straight, then ten. By mid-July he was actually managing twelve hours, and after he had cracked the ‘half a day’ goal something seemed to click. The staff in ITU had obviously sensed that he was finding it less of a strain, and began to increase his hours on the Drager quite significantly.

He was soon managing 16 hours stints, and Erica informed me that once he had done that, they were going for twenty four hours straight. I asked what the goal was after he managed an entire day, and she laughed. That would be it then, she said: no going back. Once he had managed a day, they would just keep him on the Drager permanently, and reduce the pressure he was still being given on that machine gradually until he was barely being given any support at all.

The biggest battle to date

I couldn’t believe it. The thought that he would be off the ventilator for good seemed too good to be true. I think there were periods of time where I thought he would never be off it. When another fantastic nurse, Andrea, called me at the end of her night shift on 24th July to tell me he had managed the full twenty four hours, I was over the moon. She was understandably a little nervous about calling the house so early – it was around 7am – but Marc had insisted she do it before she went home. He was clearly well aware of what this achievement meant for him. I think I probably screamed, and the children must have thought I was mad listening to my reaction over breakfast. I was so grateful to all the nurses who had helped him overcome what was one of his biggest battles to date.

Later, when I asked him what had finally helped him to conquer the dreaded Drager, he told me it was the thought of not seeing the children. The fact that he had now gone over three weeks without seeing them was killing him (metaphorically, not literally!) and he felt that if he didn’t just ‘suck it up’ and deal with the pain then he might never see them again.

Thinking about him

At the time the only method the children had of communicating with Marc was through me. They would send him messages and pictures they had drawn for him, and I got them to record short videos to show to him, of them telling him jokes or singing him their favourite songs. I tried to take him something to him from them every couple of days so he knew they were thinking about him, as I was certain that this would be the most inspiring thing I could do for him. I also pinned up their school photographs from the end of the year at the foot of Marc’s bed so he could look at them at all times.

But it wasn’t the same as being able to see them, talk to them, hug them. And that, in the end, was the powerful push Marc needed to get him through whatever barrier was preventing him from breathing unaided. The reward for all his effort was not an immediate visit from them, that was impossible. But in the end, what spurred Marc on the most was simply the knowledge that, once he was off the ventilator, the day when he could finally see his children again was just that tiny bit closer.

The Fragile Heart

During the initial days of Marc being put on the Drager machine, he continued to struggle. He didn’t seem to be able to manage anything other than attempting to strengthen his lungs again, and I could sense his pain, frustration and despair every time he was put on to the step down breathing circuit. Visits became even more of a challenge, trying to gauge how we could best support a man who was clearly trying very hard to do as the nurses were instructing him, and his family was willing him to do, without much success.

We were told by the doctors to reduce the amount of people visiting him, keeping it to the absolute minimum. Those who did visit him had to sit very quietly by his side, perhaps reading to him or simply holding his hand. He couldn’t even manage to listen to a conversation for much of the time, so I spent awfully long periods of time simply sitting, hoping that my mere presence was enough to cheer him on, as there was nothing else I could do to help his lungs become stronger.

Watching him struggle

On July 10th I visited him as usual, sat alongside him, read a little of the Charlie Brooker book (although he only managed to listen to a couple of sections that day) and filled in his diary. I chatted to the nurse on duty, probably asking tons of inane questions about the average amount of time patients took to learn to breathe again, or what Marc’s temperature was that day, or how his blood pressure had been overnight. He was still by no means stable and his temperature and blood pressure levels varied daily. I found that I was extremely glad of the few short periods of respite I had to visit the bathroom or grab a drink, as they gave me a break from what was both incredibly stressful and very dull. I hated to watch Marc struggle, but had no idea how I could support him better.

I left him that evening with a nurse called Arlene on duty. I was concerned about his state of mind, whether he would manage to sleep or not, if he would manage to cope with the double session on the Drager the following day. My parents had been looking after the children, or perhaps one of them had and the other was with me during the visit. We got home from the hospital around 8.30 and sat chatting, filling each other in on how the children had behaved that evening and how Marc had seemed that night. I remember feeling by this point that any danger to life’s Marc was past, and although I was concerned about his mental health this seemed real progress from fearing for his survival, which I had been doing a mere fortnight before.

Resuscitation

My parents were packing up ready to go home at around 10pm when the phone rang. It was Arlene from the hospital. The first phone call I had received from the hospital actually, since the fateful night Marc had been taken to ITU. Her words turned me cold and took me back two weeks in terms of the situation. Marc’s heart had stopped, she said. He had momentarily stopped breathing and they had begun resuscitation immediately, but he had not required very much before his heart had restarted and he had begun to breathe again. He was now in the same state which I had left him in, but had indicated that he wanted her to call and tell me.

I suspect that if he had not made that request, she wouldn’t have called. And selfishly, I found myself wishing that she hadn’t. Perhaps I’m a coward, but I didn’t want to know. I didn’t want to spend the entire night worried sick that at any moment Marc’s heart might stop and he might be gone. I wondered if there had been other, similar incidents which the hospital had not contacted me about before he was conscious enough to convey his wishes. I felt very strongly that unless he was dying, there was no need for them to contact me, as I could be informed of anything else the next day after a restorative night’s sleep which I badly needed. I’m not even sure how Marc got Arlene to understand that he wanted her to call me as at this point he definitely couldn’t speak, but somehow, he managed.

Back in the Twilight Zone

After a call of less than two minutes, where Arlene informed me of the facts and tried to reassure me that he was now ok, I hung up. I had asked if I should return to the hospital, but she told me that was not necessary. I had no idea what to do. Mum and Dad had put their bags down and taken their seats on the sofa again. They asked me what the phone call was about, and as I recounted the content of the call I felt like I had entered the Twilight Zone once again, and had absolutely no idea what to expect next.

I realised that my life had fallen into a pattern. Not an ordinary one. One that included regular hospital visits, being a temporarily single parent, worrying about what would happen with Marc as he recovered, but with this pattern, life had stopped being quite so petrifying. That initial feeling of terror when it was a realistic possibility that Marc might die had abated without me realising, but now it returned with a vengeance. It took this second threat to Marc’s life to make me see that the fear I had felt had been diluted and replaced with the less extreme feeling of worry. Now however, I was transported back to that initial night and the blind, all-consuming terror seized me all over again.

A cup of tea

Dad offered to drive me to the hospital, but as Marc had said I didn’t need to go in, it seemed the wrong thing to do. I almost hated the fact that Marc had wanted me to know, to worry me that way, although I could see why he did. It can’t be much fun alone in a hospital bed every night, and knowing that I was aware of his situation and thinking about him must have been a comfort. Eventually, with no idea what else to do, Dad phoned the hospital back for me and my mum (ever British) made us all a cup of tea.

Dad spoke at length to Arlene, and quizzed her about what had happened. Apparently, out of nowhere, the alarms had gone off alerting staff to the fact that Marc’s heart rate had plunged far below normal levels. They reached him within seconds to assess the situation, ascertained that his heart had stopped and began to resuscitate. However the resuscitation was barely necessary, as Marc’s heart had then restarted all by itself. This was unusual, she said, but could be a result of everything he had been through, and was unlikely to happen again.

She promised that she would call if anything did change, but said that we should try not to worry and to get some rest. Marc was, for now at least, sleeping fairly peacefully and nothing could happen to him without the alarms going off immediately. She promised that the staff would be at his side the second anything changed, and that she would keep an even closer eye on him than usual throughout the night. There was little more comfort she could offer us at this point.

A source of comfort

With this in mind, Mum and Dad reassured me as best they could. I arranged with our neighbour across the road to be on standby in case I had to make a mad dash to the hospital again, and Mum and Dad, who were exhausted and my mum still quite ill, went home with the promise to return as soon as they could should anything else happen. I checked on the children who were both sleeping peacefully, and tried to go to bed myself. One of my best sources of comfort during these times was the children. I loved nothing better than going in to see them both after visiting Marc at night, watching them sleeping soundly and knowing that there was something in my life which was good and healthy and which I didn’t need to be scared about. This was extremely comforting for me during those incredibly stressful times.

And once I finally managed to get to sleep, I found myself waking up the next morning. I had fully expected when I lay down in bed to be woken at some horrendous hour of the early morning by Arlene telling me that Marc had taken a turn for the worse, but in fact he had made it through the night with no further issue. And though his heart rate did keep dropping in a worrying manner over the next few days, it never simply stopped like that again.

So we carried on: Marc trying his hardest to manage sessions on the Drager, us continuing to try and support him in whatever way we could. But now, I couldn’t help but associate the stress of the Drager machine with the drop in his heart rate, and every time he was on it I was even more frightened about how he would manage. All I could do was try to be with him for as long as possible during each session, whisper what I hoped were encouraging words, hold his hand and hope for the best.