A Refreshing Drink

Once Marc was able to breathe unaided and had begun to work with the physiotherapists in earnest, the next job to tackle was that of him starting to eat and drink independently. Again, this might seem like a tiny, insignificant step: surely eating is second nature, but as ever with Marc, progress was incredibly slow and the road to eating again was a difficult one.

It began with the SALT team’s visit. I lost count of the amount of people who helped in some way or other with Marc’s recovery. Some, like the nurses, were hugely visible and became a massive part of our daily lives. Others, like the physios, were very important yet often not always obvious, as their work often went on outside of visiting hours. Then there were the completely invisible people, those I never actually met, despite their role playing a huge part in saving Marc’s life; like the microbiologist who tested the fluid taken from his stomach as he was first admitted to ITU and discovered that the infection was Group A Streptococcus.

An essential visit

And then there was the SALT team. I only met them once. I had no idea what their role was until they explained it. SALT stands for Speech and Language Therapy, and now that Marc could breathe unaided and was beginning to speak to us, I wondered why he would need them. I quickly realised that their visit was as essential as the work of the physios or the tasks the nurses undertook daily to keep Marc safe and recovering. They came one afternoon while I was in visiting Marc, and brought with them a number of different items which I was fascinated by. Their job? To ascertain whether or not Marc was strong enough to be able to swallow without choking,

When a patient is extremely debilitated by illness and their muscles begin to waste, it is not simply the obvious ones like the arms and legs which weaken, but also the muscles of the lungs, the heart, the throat: every muscle in the body. So before we could start to allow Marc to drink or eat anything, we needed to see if his throat could cope with it. No good saving his life only to choke him the first time he began to consume ‘proper’ food again. So the SALT team came by and examined Marc’s throat to check that there were no obvious obstructions which might prevent him from swallowing properly.

They needed to make sure that any liquid which travelled down his throat ended up in his stomach and not his lungs, where it could cause him to asphyxiate. The muscles in the throat are vital in ensuring that, when something is swallowed, they close up the tube to the lungs and ensure that the food or drink travels to the stomach instead. This process takes place inside our bodies so often, yet we are completely unaware of it occurring unless something goes wrong and we begin to cough and choke. In Marc’s case, we had to see if he was strong enough to manage this process. If he wasn’t, he could not begin to eat and drink again.

Thirsty

Ever since Marc had become more aware of where he was and what was happening to him, he had started to return to normal and had begun to want ‘ordinary’ things. He had told us, since he had regained the use of his voice, how thirsty he was. It  may well have been that he had been thirsty ever since he had come out of the coma, but now he could speak and we knew for certain that he felt thirsty, we felt terrible for him and wanted to get him drinking as soon as possible. He had begun to have a strange craving for Volvic lemon-flavoured water, which they sold in the hospital shop, and seemed tortured by his thirst. I felt cruel telling him that he couldn’t have a drink, and no amount of explaining that he was receiving all the liquid he needed via the tube up his nose would persuade him that he didn’t need a drink.

We don’t really know why Marc craved Volvic Lemon of all drinks, but can only connect it to the fact that it was one of the last drinks he had before becoming critically ill. The final afternoon I had visited him with the children before getting the emergency call in the night, we had visited the shop on the way in to the hospital and bought drinks and snacks to take up to Daddy. He wasn’t up to eating much, and I seem to remember the children consuming the snacks we had taken, but he did sip some of the drink we took him, and that drink was Volvic Lemon. I wonder if that thought, that taste, had stayed with him throughout his stay in ITU and his first craving was therefore to finish what he had started and drink the rest of a bottle of Volvic.

This is all conjecture of course – the craving may have been quite random, but whatever it was, he had been asking to drink some Volvic Lemon for days, and I promised him that I would buy him a bottle as soon as they had given him the all clear that it was safe to drink. When I arrived to find the SALT team waiting, they were kind enough to allow me to run down to the shop and buy him a bottle, so that his first taste could be the one he had been desperate for. I used the walk to the shop and back to calm myself down: knowing that there was a possibility that drinking the water could cause him to choke was yet another thing to be frightened of, but I reasoned that he was in Intensive Care surrounded by doctors, and he had to start to drink again at some point, and managed to be in a more stable state of mind by the time I returned.

Like feeding a baby

The SALT team asked Marc to swallow a tiny amount of the lemon water on a medicine spoon. It was like feeding a baby. We watched him like hawks to see what would happen: myself, the two SALT staff and Marc’s nurse for the day. He managed to swallow the tiny amount without issue, and a minute later they tried him with some more. Again, he was fine. He said it felt strange: I suppose he was using muscles he hadn’t used in several weeks, and nothing had travelled down his throat into his stomach for a long time, but he managed it ok.

I was desperate for him to start eating too, but was assured by the SALT team that it was too early for that. As usual, we had to take it slow, to see how Marc would tolerate continuing to drink small amounts and build him up from there. They left us with advice to give Marc a teaspoon or two of water every ten to fifteen minutes, recording the amount he had consumed, and said they would return the next day to see how he was. Marc was desperate to have more than this and it was torture to only allow him the tiny sips. Throughout the visit I administered the water, tiny sip after tiny sip. Most of it went down ok. Sometimes he choked slightly, which set my heart racing with fear, but by the end of the visit, nothing untoward had happened.

Disappointed

The SALT team returned the next morning outside of visiting hours and allowed Marc to have more liquid than previously. He was now permitted to have a small cup of water to drink. When I visited that afternoon I took him another bottle of Volvic Lemon, it having become a symbol of Marc’s recovery, but he rejected it. The sour flavour of the lemon had not gone down well and he was back on plain old water. I think I took the Volvic home and drank it myself. I remember feeling disappointed, as I often did throughout Marc’s recovery. It could never happen fast enough for me, and back then I had no idea of the time it would actually take, realistically, before Marc would be fully recovered and be able to eat normally again.

A further visit from the SALT team involved them bringing along small pots of yoghurt and pureed fruit, the type you give to babies who are being weaned, and trying him with small tastes of them to see if he could tolerate this slightly more solid food. He did ok with this, and they said that he could now begin to eat soft, liquid food and build towards eating normally again. For the first time in weeks, Marc was able to select something from the hospital menus and attempt to eat normally, and the nurses looked at reducing the amount of food Marc was receiving through the tube in his nose. It marked the start of ‘proper’ food, and to begin with Marc was happy eating mashed potato and gravy, custard and soup.

I remember feeling happy at this, another step forwards. Jo, Marc’s lovely physio, became a hero in a different way when she sneaked him up a packet of Quavers from the shop after he was told he could manage to eat certain crisps if he left them to soften in his mouth before swallowing them. The SALT team stopped coming to see Marc as he was declared able to eat most foods, as long as he was sensible about the amount he put into his mouth and swallowed at one time. He even began to be able to feed himself as his arm muscles improved and each little step was one closer to him being discharged from ITU on to an ordinary ward, closer to him being able to come home.

Let’s Get Physical

I have spent a lot of time extolling the virtues of nurses in this blog, and I feel very strongly that more people should realise the amazing job that they do, but so far I have omitted to focus on a group of people who were just as key to Marc’s recovery as the nurses. The physiotherapists.

Before Marc went into hospital, my general understanding of physios was that they mostly gave out exercises which helped people with leg injuries to walk again. I’m ashamed that, despite having two friends who are physios, I never really understood the full spectrum of the role. Even as early as the first few days that Marc was lying in his bed in ITU, the physios were deployed to assist him with clearing his chest of the built up mucus which we all have, but can manage by ourselves under normal circumstances. Marc, in the induced coma, lying in the bed immobile with his muscles wasting away, was not strong enough even to cough to clear the phlegm from his lungs.

So to begin with, the physios did that for him, using a tube to physically drain the gunk from his lungs and allow the ventilator to do its job and help Marc breathe. His diary states that the physiotherapists were visiting him daily even at this point, although I don’t think I was aware of this so early on because most things were a complete haze. I don’t remember ever seeing a physio until Marc was a little more conscious, but they were there, several times a day, and the job they did was hugely necessary.

Invisible

Once Marc began to improve and was moved to a bed further away from the nurses’ station, the physios started to work with him in earnest. Usually they visited in the mornings, way before visiting time, so often I wasn’t aware that they had been to help Marc, but they were. I think that’s the reason behind my neglecting to focus on their role up to now: to me they were essentially invisible for a long time, yet they played a major part in helping Marc to, eventually, walk again.

But walking was a long way off. It only takes forty eight hours of lying still for the body’s muscles to begin to waste away and become weak: a fact that floored me. By the time the physios were able to start working with Marc more physically, he was barely able to lift his hand from the bed, let alone his head or entire body. I am afraid I don’t know a huge amount about the early exercises that they did with Marc. The diary is quite vague and mostly only mentions them working his chest and lungs, but on the 16th July, there is an entry which explains that the physio team had begun to work more intensively with Marc, and actually managed to sit him on the edge of the bed for a few moments.

A big deal

It sounds ridiculous. Sitting on the edge of a bed is such a tiny, effortless action for the majority of us. Sitting down usually implies taking a rest from standing up! But for Marc it was a big deal. It also took several physios to manage this, which should tell you a little about how much effort was required. I was rarely present when they did this kind of work with him, but knew that it was going on each day, and the main physio, Jo began to come around at visiting time to meet me and let me know what he had achieved each day in terms of his physical recovery.

Despite the fact that Marc had lost around three stone in weight, I can’t imagine that lifting a man who is 6’1” is an easy task, especially when he can barely hold up his head. But getting him moving again, step by tiny step, was vital. I also believe that these exercises were good for his mental health too. Despite feeling useless to begin with, being able to sit on the edge of the bed must have made Marc feel a little more normal, and the thought of being able to do this unaided gave him something to aim for.

A new challenge

But this was a long way off. I know that, to begin with, they often had to use a hoist to lift Marc out of the bed. Another goal was for Marc to ‘sit out’: literally be lifted into a chair at the side of the bed and cope with supporting his own body for a prolonged period of time. It sounds mad, but even sitting out of the bed on a chair was a challenge, and to begin with he was not able to do this for more than half an hour at a time without becoming exhausted, perhaps even less.

My recollections of the order things were done in and how long each different part of the rehabilitation process took are a little hazy, partly because I wasn’t there for most of it, and also because the steps taken by Marc (and not physical steps to begin with, walking was a distant dream at this point) were so miniscule that I hardly even noticed his progress to begin with.

And with so many other concerns, the physio just seemed to go on in the background for much of the time. Whilst worrying about Marc learning to breathe again; whether or not he was absorbing the liquid food being fed into his stomach; the fact that he still developed regular temperatures which made his blood pressure drop; the threat that his heart might randomly stop again at any moment, and the damaged tissue of Marc’s feet, I hardly had space in my head for considering the physical progress he was making.

Motivating patients

I do, however, know how important the work of the physios was. And I began to look forward to seeing Jo, who would often make me smile with her offbeat sense of humour, the way she had developed a relationship with Marc where she teased him mercilessly whilst still spurring him on to better things, the encouragement she gave to us all. She had just the right balance of humour and sensitivity which a good physiotherapist requires. Their role is to physically motivate a patient, yet the movements they are asking the patient to make may cause them pain or feel impossible. To me, this means that the mental condition of the patient is just as important as their physical strength, so the physio has to deal with this too in order to successfully motivate them.

I imagine it is very difficult to persuade some patients to complete the necessary exercises set for them. The patient might well be unwilling because of the pain they might experience, or the effort it takes them to participate in the activities they are being encouraged to complete. But Jo was amazing. She would appear by Marc’s bed, greeting him cheerfully and probably cracking a joke about how she’d have him doing wheelies in his wheelchair around the ITU in no time at all. She made him laugh, and this made the exercises, no matter how painful or difficult, easier to bear.

Yet she was also incredibly sensitive when she needed to be. On a number of occasions she popped to see us when I was visiting and recognised that I was feeling particularly concerned about something, or was simply depressed about the lack of progress that Marc appeared to be making. When this happened, she made it a priority to reassure me and allow me to understand just how severely weak Marc had been to begin with, how far he had come and how it would all come in time. I know she did the same for Marc.

Reassurance

On one occasion he told me that an ITU doctor was quite brusque with him. He had been sitting out in the chair, but only managed to do so for around a half hour period. The doctor appeared to criticise him, implying that he should be sitting out now for periods of up to three hours at a time. This, understandably, left Marc feeling quite low. Jo was there, and reassured Marc that he shouldn’t worry about it: that people recovered at different rates and it was quite normal for him to only be managing a short period of time in the chair at this stage. I know this made him feel better, and he was therefore able to get on with his day in a more positive frame of mind. I’m certain that this allowed him to attack his next set of exercises with more determination.

And the physio team, invisible as they sometimes were to me, would play a critical role for the rest of Marc’s stay in the hospital. I will be eternally grateful for their support and encouragement.

Moments of Humour

I’m trying to tell this story chronologically, but often that becomes quite difficult. Part of the reason I wanted to write this blog was to allow myself to remember what happened to our whole family through those challenging months in 2014 and all the time that has followed. To create a chronicle which I can look back on and celebrate our survival. Part of it was to organise the chaotic events that occurred in my own mind so that I could properly process them. But the more I write, the more I remember, and sometimes I recall things which happened right back at the start, despite the fact that my blog has taken us way past that point now.

My most recent recollection is quite humorous, which I know is unusual for this blog, so I wanted to record it if only to try and make everyone smile. It also highlights how thoughtful and sensitive the ITU nurses are. When the initial trauma began and Marc was rushed into ITU we had little time to consider anything other than whether he would live or die. But as the minutes he survived turned into hours and the hours into days, we were able to consider other, less vital things.

Touching consideration

One afternoon quite early on when I went in to visit, the nurse on duty asked me if I wanted to bring in some aftershave for Marc, so he ‘smelled more like himself’. She also knew that Marc was generally clean shaven, and had for the first time managed to give him a shave, so that he looked more like ‘my Marc’. This consideration was very touching, and shows how understanding the ITU nurses are. They are able to complete incredibly complex medical tasks and save a patient’s life, but also tend to their other daily needs, washing them and shaving them and brushing their teeth where possible, to keep them as human as they can.

They understand how distressing it can be for someone to see their relative hooked up to drips and strange machines, and know that any small effort they are able to make to keep that person looking as they usually do is worth the effort. I have never been a fan of beards, for example, and whenever Marc neglects to shave for a few days or attempts to grow some kind of facial hair, even for charity, I complain about it. While I hadn’t much thought about it as Marc was lying in a coma in a hospital bed, the sight of his clean shaven face did make a difference to the way I viewed him. I would never have presumed to ask any of the nurses to shave him, feeling intensely that they have way too much to occupy them already. Discovering that shaving a man’s face just because he is their patient and they know it will make life a little easier for their loved ones though, only made me admire the nurses more.

Ridiculous

I haven’t described the funny part though. While the nurse had managed to shave off the majority of Marc’s slightly greying beard, which had made him look even more like an old man lying immobile in the bed, she had not been able to entirely remove all of the hair. The ventilator was, at this point, still very much present, and Marc had not yet had the trache put in, so the area above his mouth was slightly obscured by the ventilator tube. This meant that there was a very small area of moustache which she had not been able to reach without endangering Marc’s breathing, so she had been forced to leave it.

And it looked ridiculous.

A very small, square patch of hair above his lip. He had a distinct look of Charlie Chaplin about him. A sleeping Charlie Chaplin. And I couldn’t help but laugh. Even in the midst of this intensely serious situation, Marc, with a comedy moustache, was funny. It was the kind of thing he would have done himself to make me laugh. Grow a comedy beard and then shave it off in silly shapes, taking pictures of himself to make the children and I giggle. So, despite him being so ill and so far removed from me, I smiled because the silly moustache was just so characteristic of Marc.

More like the man I loved

I never did take any aftershave in. I figured that it would only be for me, and wouldn’t do anything to aid Marc’s recovery. It would be one more thing for the nurses to do which they didn’t need to do, and since, at that point at least, I was not able to get especially close to Marc, I knew I probably wouldn’t even be able to smell it. I did take in his glasses, and his watch when he got a little stronger, both of  which meant far more to me (and him) than Carolina Herrera’s 212. Waking up feeling groggy and not knowing where you are must be hard enough without being deprived of proper sight because you don’t have your glasses on.

Most of the nurses had no idea that Marc wore glasses for the first few days that he was in ITU. He couldn’t speak and was in a coma for so much of the time. I know that during the times he did begin to come round, his sense of disorientation must have been hugely exacerbated by the fact that he has incredibly poor eyesight and was without his glasses. But even once the nurses knew, Marc couldn’t wear them much to begin with anyway, as they would fall down his nose and he had no way of pushing them back up himself as he was too weak.

Wasted muscles

His watch also managed to increase my understanding of how wasted Marc’s muscles were at this early point. Marc always wears his watch, so I brought it in to the ITU in the hopes that having it there would provide him with some amount of comfort and familiarity, although to begin with it was completely pointless. His watch is a metal Fossil one with a large round face which I bought him for Christmas years ago. When we put in on him in hospital though, he could barely lift his arm up, and I ended up bringing the heavy watch home again for safekeeping. It was to be a long time before he could comfortably wear it again.

To return to the all-important nurses though, I can’t ever thank them enough. For everything. For the skill with which they operated the different machines keeping Marc alive. For the precision with which they administered the drugs which suppressed his pain. For the care with which they moved and washed and shaved him and finally for the respect and sensitivity they showed to myself, Marc’s mum and the rest of the family in all their dealings with us.

Nurses are true heroes who are mostly completely undervalued. During Marc’s stay in ITU, I cannot express how much easier their care and sensitivity made my life.

First words

Not long after the children had visited Marc for the first time, the nurses began to talk to us about the next stage of returning Marc to his independent status: removing the trache from his neck. I was thrilled at the prospect, not least because one less strange appendage attached to Marc’s body would make the children feel more at ease with him. And getting rid of the trache meant being closer to getting out of ITU. I hadn’t been told much about where Marc would be transferred to after leaving ITU: one thing was for sure though, he wouldn’t be able to come straight home.

Some people had talked about a ‘step down’ ward, one where severely debilitated people who were not able to cope in a general ward might be allowed the chance to rehabilitate slowly with specially trained nurses on call to assist with this specific kind of recovery. Others had hinted that Marc would simply go on to a general ward like the one he had been put in when he first came to the hospital. I remembered that ward with a shiver. Wherever he went, he would certainly need a lot of support still, particularly from the physiotherapists, since his body was still unable to do very much for itself.

A step in the right direction

I was told when I left a visit with Marc one evening that the doctors were planning to change the trache for a mini-trache ( a smaller tube which would obstruct Marc’s airway less but still allow for him be given assistance with his breathing should he require it). This sounded positive and I went home that night thinking we could tick off another thing on the list in terms of being a step closer to escaping the ITU. Not that the Intensive Care ward had been awful, actually we had been very spoilt there. The staff in ITU are so focused and attentive and there are so many of them. But ITU is a difficult place to exist for any lengthy period of time. We were warned several times by the ITU staff though, to ready ourselves for the difference between the amount of staff available to support patients in ITU and on a general ward. The lack of nursing staff available on the general ward came as quite a shock to the system.

When I returned to see Marc the next day I wasn’t sure what to expect, what a ‘mini-trache’ would look like. To my surprise, the doctors had taken action, but not to replace the trache with a mini-trache. They had decided that Marc was strong enough now to manage with no trache at all, and had removed it altogether. I’m not sure I understood this when I approached the bed: he still had some form of bandage over the hole so I assumed this was the ‘mini’ version of the trache we had become used to. But when the nurse told me they had decided to remove it altogether I was floored.

Reassured

At first, I was frightened that he might relapse and need the trache. If it was no longer there, what would happen to him? But I was reassured that the doctors were confident that he was doing fine and that getting it out was moving yet another step closer to getting him out of ITU. After listening to the nurse’s explanation and reassurance, I looked at Marc to check that he was feeling confident without the trache. I asked him if he was and I think he smiled. Then, self consciously putting a hand to the place where his trache had been for so long, he tried something. At first, there was only the sound of breath being forced out of his mouth, but eventually he managed to get the right muscles working and spoke to me.

It sound ridiculous, but I can’t remember what he said. The first words he had spoken in a month, and I don’t even remember them. I imagine it was something very silly, like ‘Hello’. It certainly wasn’t a whole sentence, he wasn’t up to that yet, but he beamed at the idea that he was finally able to talk to me and be heard and understood. I know that tears filled my eyes and it seemed like it was the first time I had cried in quite some time.

Gritted teeth

I realised that we had settled into a pattern after the initial trauma and I had stopped crying. I had simply been able to do nothing more than get from one day to the next, teeth gritted, my emotions clamped firmly in check whenever I was in front of Marc or the children, and when I was alone I was usually too busy to find the time to cry. I had dishes to do or meals to make or children to collect, or Marc to visit or doctors to talk to or people to text with updates on Marc’s condition. Even when I finally crawled into bed at night I didn’t have the energy for tears. It didn’t mean I wasn’t upset, that I didn’t constantly have a lead weight of dread in my stomach which refused to dissolve. But I didn’t cry much.

And now I was crying, but they were tears of joy. It sounds strange, but I seemed to have saved my tears for a happy occasion. Marc didn’t talk a lot that day, and what he said was hoarse and quiet, but by the end of the visit it felt amazing that he could finally, properly communicate with us again. I began to realise what a half-relationship we had been having. Every day me visiting, telling him things, talking to him, but without a response I had no idea whether or not he understood, agreed or objected to what he was being told.

Very much in the dark

We have realised since Marc’s recovery how much he didn’t understand in those early days. We told him things we felt he needed to know and we avoided telling him certain things because we felt that they would be too much for him, that finding them out when his current mental status was fairly low and depressed he would not benefit from finding out how difficult his situation was. He was often confused, on a lot of painkillers, and he wasn’t able to take in everything he was told. But we had tried to explain things to him, like where he was and how he had ended up there. But his strange dreams and weird thoughts prove that he was very much in the dark about certain things that were going on around him.

For example, when the nurses came to roll him, as they had to every few hours to prevent him getting nasty bedsores from lying immobile in one position for so long, they would announce to him, “Hi Marc, we’re just coming to roll you now.” ITU nurses understand the importance of speaking to patients and letting them know what is going on around them so they do not become distressed. But Marc later told me that he had no idea what “rolling him” meant, and as it was followed by the sensation of movement from one side to the other, began to believe that he was actually at sea on some kind of boat being rolled on the waves. Add to this the waving blue ITU curtains and you can see where he was coming from. Apparently this is a very common misconception for ITU patients on numerous drugs and semi-conscious, but all the same, it must be very disconcerting for them.

A huge leap forward

But at least he could now respond to our questions, let us know how much or little pain he was in, and ask us about anything he was unsure of. I think a lot of the talking that day was still done by me, but just the fact that he could answer yes or no was such a novelty that we both revelled in it. And the trache removal meant another huge leap forward for Marc too. When the trache  had been in Marc had been unable to eat, but now it was gone and his throat was clear of the obstruction he could be assessed to see whether or not he could swallow. And if he could swallow, he could begin to drink. And if he could drink, he could begin to eat. All of these things were intrinsically connected. I don’t think we realise as healthy humans how closely connected the workings of our bodies are. Now Marc had learned to breathe, he could start learning to eat again. The thought made me happy, although I assumed eating again would come naturally, and it didn’t.

But for now, at least, he could talk, I could see that things could become much easier for us. I left that night with a real sense of the progress he was making now, anticipating how much further we could now get with his recovery. But we still had a lot more to come, and dealing with the difficult truths he had yet to understand was going to be a new challenge which I hadn’t anticipated.

Visiting Daddy

When we arrived I first took the children into the waiting room. I never knew what to expect when I arrived at ITU each day. In theory, by visiting time the doctors had finished their rounds and most of the nurses’ duties for the day had been taken care of. They would only take care of the tasks that had to be done hourly or were completely necessary during the times when visitors came. Still, Marc was fairly immobile and needed to be turned or rolled in the bed every couple of hours to prevent bed sores developing, and I didn’t want to burst in with the children and see the curtains closed around the bed.

I left the children with their nana in the waiting room and buzzed the door to go in. All was well: Marc seemed quite bright, was still off the Drager and was having no procedures at that current moment. As a bonus, the rest of the ward seemed calm (well as calm as ITU ever gets.) I spoke to Marc for a moment, as well as the nurse on duty, checking that it was still ok to bring the children in. I probably brought some chairs across to the bed for us to sit on, and reminded Marc that Dan and Amy were here to visit. Once I knew that all was well and in place, I went back out to bring them in.

Wildly curious

We entered the ward, the three of us together, and I was more nervous than I had been in a long time. Both children were quiet, and stared around, wildly curious, as we walked in. I saw the ward through their eyes: a large open space filled with a multitude of machines they didn’t understand, the walls lined with large, metal-framed beds which held a myriad of elderly, extremely sick looking patients. They didn’t cry, try to leave or ask any questions. Instead, they allowed me to lead them to their dad’s bed, where his nurse was waiting to greet them with a friendly smile.

Marc’s face was amazing. He glowed with more happiness than I had seen from him in a long time. I couldn’t make him happy like this. When I visited he could show me his real feelings, admit if he was depressed or unhappy or in pain. He relied on me to make things better for him, to support him through the tough times on the Drager or when he was feeling exhausted after a physio session. He didn’t have to put on any kind of show. For any other visitors he did try and appear as though he were getting better, making progress, happy to see them, even when perhaps he wasn’t.

But for the children, he simply lit up.

Missing him for a month

They, on the other hand, found him strange. I believe that children who go long periods of time without seeing a parent, perhaps a father who works on an oil rig at sea or serves in the armed forces and is away for prolonged periods of time, are shy when they see that parent again. Like a distant relative they only see twice a year, they take a while to warm up to them, and affection, feeling comfortable around that person only returns gradually. That was definitely one of the factors at play with Marc and the children. They had gone from seeing him every single day to missing him for a month and had adapted accordingly.

But also there was the fact that their dad looked nothing like the dad they knew. My mum tells a story about me as a child, pelting into mum and dad’s bedroom in the morning as I always did and flinging myself into bed next to my dad. He had been playing hockey in a match the previous evening and had received a hockey puck or a stick in the eye. Consequently he looked a right mess: the whole of his eye socket swollen and purple. The minute I saw his face, I screamed and ran around to the other side of the bed where I promptly howled in my mum’s arms for a good twenty minutes. I was scared of my dad because I did not recognise him as the dad that I knew.

A huge shock to the system

And Marc looked awful still: skeletal, with skin hanging off him, pale, and with healing wounds in all sorts of places from the different tubes he had been receiving treatment through. A hole in his neck with a plastic tube sticking out. A thin tube running up his nose which looked brown on account of the food substitute being sent through it. Tape to hold that tube in place. Added to that, he couldn’t speak and could barely lift his head to look at the children. The staff had talked about trying to sit him in a chair when they first visited, but he wasn’t strong enough. So the man that the children were faced with was not anyone they recognised as their dad.

To give them enormous credit, there were no dramatic reactions. They didn’t get upset or try to leave. They dutifully came to the bedside, sat down when instructed to and shyly answered any questions the nurse asked them. Marc smiled at them and listened to their replies. I remember asking them to tell Daddy all about what they had been doing, and desperately trying to keep up some kind of conversation so that the visit would seem normal, when in reality it could never have been that.

Staring

Several other members of the team came across and made the effort to say hello, partly probably because they had seen the children’s photographs on the end of the bed and were curious, but also, I believe, out of a desire to make the visit easier for them: more friendly and less alien. Marc’s main physio, Jo, made a huge point of being very friendly, of trying to explain what her job was and some of the things she had been helping Marc to try and do. I found myself gesturing to the different machines and trying to explain their purpose, telling them what the tubes were helping Daddy to do, but I’m not sure how much of it was understood or went in. Both children did a lot of staring at Marc, or staring around the ward at the other patients, despite me trying to persuade them that it might be seen as rude to stare at people, especially when they were ill.

In the end I resorted to the diary, explaining what it was for and gently trying to say that they could write something in it, as they were the ones visiting Daddy today. Amy was only four at the time, but I told her she could draw a picture, and I said that Dan (who was in Year Two) could write a message or draw a picture for him: whatever they wanted. I had imagined that one of them could draw while the other chatted quietly with Marc and I, and then they could swap. What actually happened was that Daniel began to write a beautifully well meant “Get Well Soon Daddy” message in bubble writing, and promptly descended into a complete meltdown because he couldn’t get one of the letters just right.

Meltdown

Despite several attempts to erase his mistake with a rubber and much effort to redo the lettering, he kept making the same mistake and was pretty much howling on my lap by the time he had managed just over half of the letters. I realise that the meltdown was not due to his imperfect calligraphy, but more linked to his inability to cope with seeing his dad like this, but it did make things quite difficult. Amy, who had been fine up until this point, began to show some signs of distress, as she didn’t understand why Daniel was crying.

I was very aware of the many, many sick people around us who would not appreciate the deafening sound of a crying seven year old in the usually muted atmosphere of the ITU. I also didn’t want Marc to be upset by the fact that his children were distressed by the visit. I didn’t think it would do his own self esteem any good. Finally, and perhaps most vitally, I was very concerned about Daniel’s state of mind.

I tried to suggest that Dan and Amy could have a break from sitting inside the ward, go and draw in the diary out in the waiting room and perhaps go for a walk with Nana to pick up some crisps and a drink. Although this seemed like a sensible solution, Dan was at the point of no return and I ended up almost having to drag him out of the ward, pencil clutched in hand, determined to get the lettering perfect on Daddy’s message. We spent several minutes trying to further reassure him that Daddy didn’t care what the message looked like, he only cared that Dan had come to see him, to no avail.

Keeping their mind off things

Eventually I left them both in Linda’s care, and she did take them for a walk and bought them some treats to settle them and keep their mind off things. She was far more able to do this than I was at this point. I returned to Marc and attempted to save the situation, reassuring him that this was just a first reaction and that, in time, the children would come to terms with the way he was and be more able to visit comfortably. That his condition was temporary, and that every time we visited things had improved just a little bit. I also apologised profusely to the ITU staff for the disturbance. They were wonderful and said it didn’t matter a bit.

When the children came back from their walk they were calmer, and managed to pop into the ward once more, to show their dad what they had drawn for him and the messages they had written. He managed to convey without words how thrilled he was with both their visit and their artwork in his diary. I think we did a lot of me asking questions or phrasing statements and him nodding and shaking his head to indicate his answer. Either way, we managed to communicate to the children that their dad was ok. Not perfect, but ok, and would only get better from this point.

Squeamish

Amy was fine with the majority of the visit, perhaps because she was so much younger and understood less what was going on. She is also far better at dealing with medical issues, far less bothered than her brother, and has been known to ‘play nurse’ and help Marc with dressings and so on since he came home from hospital. Dan, on the other hand, finds this kind of thing quite difficult. He doesn’t like anything gory and is quite squeamish about any cuts, scrapes or wounds. So I imagine seeing his dad so weak was a shock. He also confided to his nana that he didn’t like the tube up Daddy’s nose, and I wondered if that was the main element of the visit which had upset him.

Overall, the visit wasn’t entirely a success, but the children had to come and see Marc at some point, and I was glad in the end to have conquered the initial visit and have it end fairly calmly. By the time the children next came, I am happy to report that things had improved for Marc quite a bit and thankfully they were able to see more of the ‘old’ Daddy again.

A Balancing Act

It is now a week since Marc had the operation on his foot, and so far, all seems well. He was at the hospital all day until I collected him at around 7pm, but thankfully was able to come home. I was so happy that he didn’t need to spend the night at the hospital, which would have been bad for us all mentally. I think, despite their minds being fairly easily distracted, both Daniel and Amy were concerned about him. Dan wanted to know exactly what he was having done, how long it would take and when he was expected to come home. He’s very precise and likes to know every details about everything. He also doesn’t like it when things don’t go exactly as planned. Amy is usually more laid back, but the first thing she asked when Linda brought her home from school was if her daddy was home yet. When he wasn’t, she looked worried.

It is no surprise that they were concerned about their dad, having had the experience of him being away from home for over three months when he was in hospital in 2014. In total, they went four weeks without seeing him at all, and even when they did get to visit him it was on a hospital ward, an unpleasant place to see your dad, especially when he’s in a bit of a state really. We had to explain what had happened to him in the simplest of terms, attempting not to frighten them while making sure they knew enough to make some sense of what had happened. Before their first visit, we thought very hard about what to tell them about why he looked the way he did and what all the tubes and machines were for. Even when prepared beforehand for what they were going to see, it was difficult.

Lifting his spirits

But I’m jumping ahead again. The children didn’t see their dad until he was off the Drager and down to as few tubes as we could possibly manage. It was a careful balancing act as to when the best time would be, and who would be there to support with it, as I didn’t feel I could do it alone: support Marc, Dan and Amy, as well as keeping myself on an even keel. It was difficult to strike a balance of the children’s need to see their dad, the undisputed benefits of him seeing them in terms of lifting his spirits and aiding his recovery, with ensuring that we didn’t disturb or frighten them with how sick their dad looked.

But before all of this could be considered, there were a few more hurdles for Marc to jump. When I received the call to say that he was off the Drager I was thrilled. I visited him that day with a real joy that, finally, he was making strides on the road to recovery. When I got to the hospital, the Drager was still sitting next to his bed but, for the first time in a long time, he was not hooked up to it, nor was he attached to the larger ventilator. He was truly breathing unaided, the only support he still had was a little oxygen administered through a small mask which covered his nose and mouth.

Breathing independently

The trache was still there, but there was nothing attached to it. No tube at all. I was told that if all went well they would remove it altogether in the next couple of days, as long as Marc proved that he could breathe independently on a continuing basis. The trache had been preventing Marc from speaking, as when a patient has a trache in place it contains a cuff inside the throat which inflates and prevents air from travelling up the throat and into the mouth. We need this air flow to allow us to speak, and with the trache in place, Marc was unable to make any sound.  I believe that he could have spoken to me at that point, had he covered the hole in his neck with a hand to block the flow of air from escaping his trache and allowing it to move upwards to his mouth, but he didn’t. Either no one showed him how to or he didn’t have the strength to sit with it covered and focus on speaking to me at the same time.

Anyway we passed a fairly happy visit in the knowledge that Marc had conquered the Drager and was one step closer to getting out of Intensive Care. I’m certain that I spoke to him about the children and how they would soon be able to come in and see him. I wanted to check that he was ok with this, as I wasn’t sure how he would feel about them seeing him this way. It was a big decision to make, and even at the point when they did visit, I’m not sure if I truly knew how Marc felt about them coming. He obviously desperately wanted to see them, but at the same time did not want to scare them or distress them when they saw him in his current state.

Looking far from his best

Whilst he was certainly better than he had been a few weeks before: he had been moved to a different bed further down the ward (a sure sign that they weren’t as worried about him as he was no longer right under the nurses’ noses); he no longer had a dedicated nurse to himself, usually he was paired with another patient with a nurse to work between the two beds and he was now rid of the dialysis machine, the Bair Hugger blanket, the ventilator, lots of the drugs and fluids which had been sustaining him. That said, the children had not seen him at his worst, and he was still looking far from his best.

We decided we would plan a visit one afternoon and bring the children, with the support of my mum and dad or Marc’s mum. A visit now would allow them to see him with the minimal number of tubes possible, and hopefully frighten the children less. I had not really asked the hospital staff much about the children being allowed in to see Marc, believing what I had initially been told about children not being allowed into the ITU, but eventually the doctors and nurses began to bring up the idea. I think they believed that Marc would really benefit from seeing Daniel and Amy. They hoped that it would alleviate some of his depression, give him hope and spur him on to a speedier recovery.

A big decision

But neither Marc or myself wanted to frighten them. Most of the decision making fell to me, as Marc wasn’t really able to communicate in any depth, only nod or shake his head slightly, shrug and use his facial expressions to convey emotion. Eventually I decided that, with careful handling and explanation, the children would manage a short visit. I only hoped that Marc truly agreed with my decision and would not be angry later that I had brought them in, especially if they reacted badly to seeing him.

In the end we decided that they would visit on a day when I knew the nurse looking after Marc well. We planned for Linda to come with us, mostly staying outside in the waiting room so that I could bring the children out if they became worried or wanted to leave. I explained that Daddy had a small tube up his nose, which was making sure he had food, and that he wasn’t able to move very much at the moment because he wasn’t strong enough. I don’t remember what else I told them.

We set off for the hospital that day, a journey I had now made around sixty times alone, and I felt more terrified than I had done for a long time. With no idea how the children would react to the strange, alien place that was the ITU, or the fact that their dad didn’t look anything like they were used to, I drove to the hospital that day with a huge feeling of trepidation, wondering how they would react.

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.