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.