Inspirational?

Today was Marc’s 45th birthday. We spent it mostly together as a family, and celebrated in our own quiet way. Nothing too fancy, no massive party, just the four of us opening Marc’s presents together, a little breakfast in bed followed by lunch out and a glass of wine or two. A far cry from the partying which heralded a birthday celebration in our youth, but actually much more satisfying. I think Marc was really happy.

I have been writing the blog far less since I got to the point where Marc left ITU and, if I’m honest, a lot of the reason for this is the simple fact that while Marc was in A5 I had little to do with his recovery. It was not as labour-intensive as his time in ITU had been for me: I was less fearful of his mortality, I was far less involved with his treatment and spent little time with him due to the reduced visiting hours. I think that’s the reason why I am skipping over the time Marc spent there much faster, even though it was the same length of time that he spent in ITU.

Getting on with things

People have said to Marc and I over and over since his illness how inspiring they find him, and me. Both of us struggle with this concept, as I don’t think, in fact I know, that neither of us feels like we are particularly inspiring. We just got on with it in a difficult situation. I know during the weeks that Marc was in A5 many things happened outside of the hospital which impacted on us, and having focused very much on the medical in my recent blogs, wanted to touch a little on how life outside the hospital was still going on, despite what had happened to Marc.

It was the summer holidays, and there was no work for me or school for the children. I had long ago cancelled our planned week away, once I realised that Marc was going to be in no condition to travel for some time to come. We did manage to go for a long weekend we had planned at Centerparcs with my mum, dad and sister’s family while Linda and Matt held the fort at the hospital, promising to call us should anything change. It was very strange staying in our lodge for 8 people, which should have held both my sister’s family and my own, with Marc absent. The place felt odd with one dad missing, and I slept alone in the double bed which should have been for Marc and myself, all the while tensely awaiting the updates which confirmed Marc was ok.

Feeling guilty

We repeated the same process in reverse when Linda took a short break she had previously booked to the Isle of Wight. I sent her text updates every day, knowing she would not be able to properly relax without regular reassurances, and vowed that I would get a message to her instantly should Marc’s condition change at all. We both, I am certain, felt guilty taking those breaks, no matter that they lasted only three or four days each. I know that the children enjoyed Centerparcs far more than I did. It was for them that I went really, to try and keep things normal and not deny them the holiday they had been looking forward to all spring.

When someone is ill for so long, some kind of ‘normal’ has to return eventually, even if it is fleeting and feels false. It is impossible to go on in panic mode forever, and perhaps the key to surviving such insane circumstances lies in managing to keep some semblance of normality, at least when you are not in the hospital itself. The holiday certainly did the children good. They didn’t even ask about their dad much, which upset me a little, but I suppose they were generally kept occupied and having fun. On the whole it probably did me good too, and my parents and sister made sure that I was distracted and took care of the children for me as often as they could.

The practical things

During the rest of the summer I’m not sure what else I did. I got the practical things done somehow. Both children had new uniforms and shoes ready for school in the September. We always managed to eat, and even had a decent amount of home-cooked food due to some very kind, concerned friends and family members. The children were read to, and someone heard Daniel read most nights, though it wasn’t always me. They had no end of play-dates and days out offered.

That was one thing that concerned friends could truly do for me and which I appreciated so much. Entertaining the children and distracting them from any worrying thoughts about their dad was, to me at least, one of the most vital things throughout his illness. And anyone who the children were comfortable with and who was prepared to have them over or take them out for an hour or so was doing me a massive service, even though most of these people denied that they were doing much at all.

A crushing responsibility

And I did occasionally manage to have a ‘night out’ myself, although these consisted usually of friends coming over to mine with a takeaway and eating it whilst keeping me company, or me visiting a friend and perhaps staying over (sometimes after drinking copious amounts of wine) while my parents looked after the children to give me a bit of a break.

I don’t remember drinking a lot of alcohol by myself during the time Marc was in hospital. I don’t drink a lot anyway, and rarely open a bottle of wine by myself. But there were a couple of occasions where I went to a friend’s house and purposefully drank more than I would usually have done. It was the only time I managed to feel like I could ‘let go’ a little, of the crushing amount of responsibility I felt every day that Marc was in hospital. Usually I managed to put on some kind of face: the sensible, ‘I’m ok thanks’, coping face, which hopefully demonstrated that I wasn’t falling apart at the seams due to my current situation.

But those few nights, and it really was only a couple of times, I somehow felt because I was in someone else’s house (and someone that I trusted implicitly to take care of me) I could drink more than I should and, for a little while, perhaps forget a little of the pressure I was under. I remember remarking to one of my friends that I was so sick of putting on a brave face and being sensible. That all I wanted to do some days was shrug off the responsibility and act like an immature teenager, let someone else take over, become somebody carefree who could do whatever they wanted and damn the consequences. Of course this was far from the truth, and the next morning when I woke up I had to get on with it again, but just for those few hours I could chat and drink and (yes, I feel guilty saying this) laugh a little. It really helped.

Loving the ordinary

To return to the inspirational label, I don’t think I deserve it. I simply coped the best way I could with the chaos that was thrown at me that summer. Some days i coped well. Most of the time I managed to keep a lid on things. But there were definitely times when I resented being in the position I was in, having to be so sensible, so responsible, so in control. I think most people would have been just the same. And now we are back to some kind of normality and celebrating another birthday Marc might not have seen, I am so glad to have my routine, ordinary, ‘no drama’ life back again.

So inspirational? No. I simply did what anyone would have done. I did my best, and hoped that, most days at least, it was good enough.

Food for Thought

Last week Marc and I were invited back to Warrington Hospital for the ‘Big ITU’ day, where the Intensive Care staff get together to discuss their progress and work on strategies to improve their performance over the next year. It was quite an eye opener for Marc and myself to hear some of the talks, where doctors and other staff members discussed the facts and figures involved in the running of the busy ITU department, especially when they began to talk about the ethical decisions which they have to make on a daily basis. On the one hand it was strange, but on the other, the many different targets that hospital departments are required to meet and the areas for improvement they have to identify was very familiar. In fact it seemed scarily similar to the sorts of meetings I am used to in the teaching profession.

Thinking about the ITU almost as part of a huge business, which has to function as effectively as possible, taking elements like an ever-reducing budget and a finite number of beds into account, seemed so alien to me. As a previous patient and relative of the ITU, and having on the whole received nothing but exceptional care from the department, it seemed odd to consider Marc as simply one of a massive number of patients passing through ITU on an annual basis. It saddened me that so many of the frustrations being felt by the doctors, nurses and physiotherapists were linked to budgetary concerns, and I know that they all felt they would be able to do their jobs and provide better care if they had more money to spend on extra staff, new equipment and better training.

Overwhelming

They were so welcoming to Marc and I. It was a truly moving experience, to be greeted so warmly by so many of the faces we remembered well from Marc’s time on the ward. There were nurses who had come off night shifts and stayed specifically to hear us speak, doctors who had come in on their day off, and physiotherapists who had taken a break from their usual ward round to come and say hello. The ITU Matron and Educator introduced Marc, and despite him having rehearsed his speech many times at home, he almost broke down before he could even begin talking. I think it was overwhelming for him to see so many of the people who had been responsible for saving his life sitting there in front of him, waiting for him to speak.

And I was so proud when he cracked a joke about not even getting through the first sentence of his talk before crying, pulled himself together, and managed the rest of the speech brilliantly. He is an entertaining man to listen to, and despite recapping what we know is an incredibly distressing story, he managed to make his audience laugh several times throughout his talk. My favourite part was when he spoke about the origins of the word ‘inspiring’, which actually means ‘to inhale’, and credited the ITU staff with literally and figuratively breathing air back into his lungs when they slowly but surely brought him back to life. They, he said, were the ones who deserved the title of inspiring.

A hard act to follow

After he spoke, one of the doctors thanked him and then it was my turn. Marc was a hard act to follow, and I’m certainly not as funny, but I tried to keep to my remit: letting the ITU staff know what they had managed to do well from my perspective as a relative who had spent a lot of time on the ward, and mentioning a few of the things which I had found particularly difficult during Marc’s stay. Afterwards, I answered a couple of questions, which showed that the staff were, as ever, striving to know how they could make things better, easier for the patients and relatives visiting the ITU.

Then they called for a break. We got the chance to talk to people: nurses, doctors, physiotherapists, who had known Marc while he was in the ITU, or heard about him, or were simply interested in his story. The doctors and matron said that listening to us would be the most powerful part of their day, because all the facts and figures in the world were nothing compared to the real life story of a patient and relative who could give insight into their own experience of the ITU. It was likened to asking the customers of a supermarket what they wanted from their store, and they said they would certainly ask other patients to speak in the future.

A real insight

What I enjoyed the most about the day was the feedback we got from those who had listened to us, who knew Marc well, who were thrilled to see him looking so good now. Several of the nurses and doctors talked about reading this blog, which was lovely. One said she had never imagined what it was like for a relative of a patient in ITU to have to consider their loved one, at the same time as keeping things running outside of the hospital, for the children back home. She said it had given her a real insight into how the relative of a patient might be feeling, when previously perhaps she had only been aware of the feelings they might have had concerning their sick relative in the ITU.

Another person I spoke to was one of Marc’s physios, who said she had showed one of the posts about her to her mum. She said it had made her mum so happy because it gave her a real insight into what her daughter did and how much she helped people through her job; that she was extremely proud of her daughter when she read it. Another of Marc’s physios was glad we were there on the day as proof of how essential it is for them to use instincts in their job to help them understand what a particular patient needs at a specific time, even if what is needed does not fit with what the manual suggests.

A large part of my speech focused on how important instinct is in any kind of medical role. Understanding how a patient or relative is feeling, having empathy, knowing when to be tough and when to offer sympathy or a shoulder to cry on is vital in my opinion. And I wouldn’t have changed most of the things about the way Marc and I were treated in the ITU. At a time when most people are crying out that the NHS is in crisis, I think it is so important to celebrate what is being done well in our hospitals.

Dedicated professionals

One of the doctors said how important it was for staff to hear what Marc and I had to say at a time when morale was so low within the NHS. And listening to the talks about budgeting and bed shortages, how decisions are made about which patients are admitted to the ITU and which they simply don’t have room for, it made me worry for the future of the NHS. I don’t claim to be any kind of political expert, in fact I actively avoid political discussions as often as possible, but it seems to me that we have a Health Service filled with dedicated professionals, none of who went into their chosen profession for the glory or the financial reward, who are constantly having to make more and more difficult decisions about how they spend their ever-reducing budgets to best serve the needs of their patients, the numbers of which never decrease.

I’m not sure what we can do about it. I only know that if, on that fateful night in 2014, the NHS had not existed, if it had not been given some kind of budget, if that budget had not been cleverly managed to create the ITU at Warrington Hospital, if it had not been utilised to train all of those amazing professionals to work in it and stock it with the relevant lifesaving equipment, then Marc might not be here today to give his talk. And he is only one example of one patient of the hundreds that go through the ITU in a single year.

And that is definitely food for thought.

Independence Day

As time went on, Marc became used to life on A5. He knew the sisters, nurses and support staff well, and began to adjust to the lack of instant support which he had received in ITU. It was probably good for him to have to wait for a nurse to answer his buzzer and attend to his needs, as in the long run it forced him to do things for himself which he had previously believed impossible, but I know he still felt incredibly trapped and frustrated. It meant that something an ITU nurse would have taken care of in a matter of seconds, could now take up to half an hour to sort out, as he had to wait until a ward nurse could spare the time to help him out.

Alongside Marc’s ongoing physio, he still had many other things which he needed assistance with. One of these was a catheter. The staff in ITU had tried on several occasions to remove this prior to him leaving the ward, knowing that life would be a bit simpler if he could just manage that one tiny thing for himself. Not that he would have been able to hop out of bed and visit the bathroom by himself of course. But knowing that he could have managed a bed pan would perhaps have made him feel a little less of a burden, as well as giving the busy nurses one thing less to do.

A prolonged wait

Sadly, the attempts at catheter removal were unsuccessful. Every time it was taken out, the nurses waited to see if Marc’s bladder function would kick in and start working again. And every time, they were disappointed. Marc would feel the need to urinate, but simply couldn’t manage it independently. This was just another example of a part of Marc’s body which would take a little more time to recover its usual function. It sometimes felt as though the trauma of the initial emergency had caused all of Marc’s different organs to forget how to perform their job. Only time would jog their memories and remind them of what they were supposed to do.

When a catheter is removed, there is a sometimes prolonged wait to see whether or not the removal has worked. The nurses have to monitor how much liquid is collecting in the bladder and, when that amount reaches an unsafe level without the bladder being emptied independently, the catheter must be re-inserted to relieve the pressure. Otherwise, the patient’s kidneys and bladder can suffer permanent damage. In this case, the catheter will be retained until the doctors recommend another attempt at removal. And Marc’s bladder had gone so long without completing its usual function that it didn’t know what to do. Whilst this in itself was annoying, the removal and reinsertion of the tube was extremely painful, and Marc became increasingly depressed every time the procedure failed to work.

Not pleasant

Marc also had his ileostomy (or stoma) bag, which also required emptying on a regular basis, even though he wasn’t managing to eat huge amounts of food. Often on A5 Marc was left waiting for a nurse to empty either his catheter drainage bag or his stoma bag. Whilst this wasn’t particularly uncomfortable for him: the catheter bag was simply attached to the side of his bed and the stoma bag lay taped to his stomach, if left too long, the bags ran the risk of becoming overly full and leaking. Not pleasant. And I am not in any way blaming this lack of attention to Marc’s needs on the A5 nursing staff. They completed their rounds and attended to patients’ needs as often as they possibly could, and would never have simply left a patient waiting for something while they idly chatted with a colleague. No. There just weren’t really enough of them to get around all the patients as often as they needed to.

In general, one nurse was in charge of two bays of six beds: twelve patients in all. They did have auxiliary staff to help them out, but certain jobs can only be completed by qualified nurses, and they had a huge lists of essential tasks all waiting to be completed at one time or another. Completing the usual checks: temperature, blood pressure, heart rate and so on. Sending several patients per day down to the relevant theatre to have their operation and managing them on their return. Dealing with consultants, doctors, physiotherapists, dieticians, all trying to do their own rounds and work with the different patients. Doling out correct dosages of the relevant medications, which was another thing Marc often had to wait for. It was no wonder they didn’t manage to get around to emptying a patient’s stoma bag quickly enough sometimes.

Inconsolable

All of this came at a time when Marc was still really only just coming to terms with the idea of having a stoma. He had been told of its existence whilst he was in ITU, but with so many other things going on at the time, I don’t think he really took it in initially. His brain had to process the different things which had happened one by one. Then one day towards the end of his stay in Intensive Care I came to visit to find him incredibly distressed. When I asked him why, it turned out it had just hit him what having a stoma bag truly meant, and the potential long term prognosis of it. I will never forget that particular day: he was almost inconsolable and I didn’t really know what to say to him. I was mightily grateful for one particular ITU nurse that day, who I know had supported him above and beyond the call of duty as he poured out his heart and all his concerns to her. His physio Jo was also very practical, and talked to him realistically about how many people managed a stoma bag easily as part of their day to day existence without anyone even being aware of it.

Once he was on A5, Marc was far more aware of the need to attend to the bag. Prior to that I think the ITU staff just emptied it without him really understanding what was happening. On A5, he was able to consciously witness the emptying and changing of the bag, but it still took him quite some time after that point to fully come to terms with it. Whilst he had been assured that eventually he would be able to manage the stoma by himself, at this point he still felt incredibly overwhelmed by the idea. The fact that it was sometimes left until it was overly full and then leaked only increased his alarm at the idea of managing one full time when he eventually returned home.

Potentially life-changing

I think patients who are aware that they are having surgery and will have a stoma inserted have the time to adjust to the reality of it. In Marc’s case, he simply woke up one day after surviving an extremely serious illness to find many different things had happened to him, completely without his knowledge. He had to learnt to deal with each one in turn, and the stoma was one of the last things to register. And it was potentially life changing and drastic. In the long run, he did adjust very well to it, but those few weeks in A5, it felt like another insurmountable obstacle to be overcome. And for someone who is weak and pretty much confined to a bed all day, the idea of confidently coping with an ileostomy bag was an incredibly difficult one.

Like the physiotherapy, I was unaware of most of this going on. During our visits the nurses stayed away, taking advantage of the busy ward, patients occupied with their visitors, to catch up on tasks which were neglected the rest of the time. But the reality of life on a general ward was that the nurses did not have sufficient time to deal with each patient’s needs fully. During our visits Marc would tell me about his day, about how long he sometimes had to wait for things like his medication, or his pillows to be adjusted, or his catheter bag to be emptied. And after witnessing the utter brilliance of the NHS during an extreme emergency it made me incredibly sad that, in the day to day running of the wards, the NHS staff were unable to provide the same standard of excellent care.

Frustration

Despite the fact that people on the wards were ill, because they weren’t desperately ill, they would not be afforded the same level of care as someone in Intensive Care, simply because there were insufficient staff available. I knew that the nurses on the wards would have loved to be able to spend sufficient time caring for each individual patient, but the lack of staff, lack of time, lacks of funding meant that they couldn’t. And it made me think how tragic it was for these wonderful nurses, who were barely spared the time to give out drugs, let alone spend time actually talking to a patient and finding out what might be wrong with them. Like they were missing out on the part of their job which probably made it worthwhile.

However, Marc’s frustration over the lack of nursing staff available to help him definitely did him a favour in the end. With all the issues he had been trying to deal with in ITU, he had become extremely dependent on the nurses, and it occasionally concerned me that he didn’t seem to want to do things for himself. Being on A5 meant he had to try, and forced him to start doing things which he had previously not believed he was capable of. When in ITU the nurses would probably have taken care of a particular issue without a second thought, he now had to consider that he might just be capable of managing himself. And eventually, through necessity, he began to build his physical strength and restore his belief in himself.

The Physio Heroes

I have written before about how much Marc looked forward to his daily visit from the physiotherapists. Not only were they fresh faced and happy to see him each day, they symbolised the route to his escape from the hospital, and he knew it. I rarely came across them as they usually saw him in the mornings, but I remember the first time I met Katie, Marc’s main physio. She greeted me politely and began to talk about the work she and the other physios were doing with Marc. It felt very strange to speak to someone who was working so closely with my husband and yet know her so little.

I think the physios liked visiting Marc. He was a very enthusiastic patient, mainly because he was extremely eager to regain his mobility and get out of the hospital. He didn’t complain, he worked as hard as his weakened body would allow him to and he pushed himself to achieve a tiny bit more every day. Again, to begin with I think they did a lot of simply lifting him out of the bed on to the chair, allowing his body to adjust to a sitting position and the different muscles this utilised. Each day they would increase the amount of time he spent out of bed in the chair. he was given long, stretchy, colourful pieces of rubber which he had to pull to strengthen his arm and leg muscles. The physios showed him how to use them to do different exercises, supervised him while he got the hang of them and checked that the supportive pads his legs were placed on were doing their job to ensure that the blood supply to his feet was sufficient.

Getting out

I met Katie fairly soon after Marc moved into Ward A5, and Marc was fairly immobile at this point. It surprised me, therefore, that she immediately began talking about Marc getting out of hospital. She was the first person to do so with any kind of seriousness, and I appreciated the optimism that this gave me. It also, however, absolutely terrified me. She talked about what Marc might need when he came home, mentioning a bed located downstairs, a wheelchair, a shower seat. These were all alien concepts to me, and while I was massively looking forward to Marc coming home, I was also given a glimpse of the kind of support Marc would require, and the fact that there would mostly only be myself there to cater for him.

Still, she reassured me that it would not be for some time yet, and for the time being, I tried simply to take in what she was saying and look on the bright side. She also vaguely mentioned the idea of Marc being transferred out of hospital and into some kind of respite care until he was stronger, explaining that he was not ill enough to require a hospital place but perhaps too weak to manage at home to begin with. The idea of this gave me even more to think about, and the prospect of visiting Marc somewhere else, possibly even further away from the hospital, was not one I relished.

Major Progress

But the major work was going on with Marc each day while no one but the physios were there to witness it. I remember some of the nurses on the ward commenting to me, when they had the time, how well Marc was doing with his physio, and once he was on A5 he did seem to make major progress quite quickly. He was given special surgical shoes for the first time, and allowed to move a few steps with a zimmer frame, laughing at how he felt like an OAP. His feet, still recovering from the massive damage caused by the deprivation of blood during the initial stages of his illness, frequently bled during these walking sessions, and it was a running joke between Marc and Katie how she regularly ‘made his feet bleed’.

It sounds horrific, but he couldn’t always feel what was happening (the nerves in his feet were so badly damaged) and I think that anyone who works in a hospital needs a healthy sense of humour to be able to deal with the awful sights they see each day. Luckily Marc can take a joke as well as the next man, and I imagine he made fun of Katie as much as she and the others teased him during their different sessions together. They became quite friendly, and I honestly believe that she was a major part in him wanting to wake up each day while he languished on A5, unable to do anything for himself unless the physios were there to support him. Katie was planning her wedding at the time, and I know she and Marc talked a lot about it while they spent time together, because she and her fiance were to be married at the same hotel that Marc and I were. I think it made him feel connected to her and helped with the exercises, as they could distract themselves while they chatted about Katie’s wedding plans. It allowed Marc to relive our wedding a little, a happy time for him, and this must have taken his mind off how difficult the physio sessions could sometimes be for him.

One small step…

The distance between Marc’s bed and the door to the bay his bed was situated in was probably around six of my usual steps. I distinctly remember the day when Marc managed to get to the door and back to his bed with the assistance of the zimmer frame. It was momentous! Twelve little paces, but he managed them by himself, and the freedom promised by this tiny walk must have felt enormous. The famous phrase ‘one small step for man, one giant leap for mankind’ comes to mind: if he could manage twelve steps today, think of what he could be coping with in a week, a month, three months! The fondness with which Marc was regarded was clear from the pride with which the nurses on duty reported his progress to me that day. I didn’t even see Katie, but mentally wished her a thousand thank yous for giving Marc the confidence and building his stamina until he was able to manage that tiny journey.

Dependent

The hardest thing about the weekends on A5 for Marc was the fact that the physios didn’t work. From Monday to Friday he was pretty much guaranteed at least one physio session per day, two if he was lucky. But on Saturdays and Sundays, when Katie and her colleagues didn’t work, he pined for them. On the weekend of the bank holiday in August he had to manage three whole days with no physio, and it nearly killed him! I could always tell during our visits at the weekend that he had not had a session that day, as his mood reflected it. He had almost become dependent on the physio: he really needed to feel like he was making progress each day, no matter how small, and having no physio session made him feel like he had wasted a day.

I also remember him telling me once that he had missed his physio on a weekday, because he had fallen asleep during the morning when he was due to see Katie. When she passed by later he called her over and asked why she hadn’t been to see him. She explained that he had been fast asleep and that sleep was as vital to his healing process as the exercises, but he was still really annoyed about it. This turned out to be a good lesson: even now Marc gets tired if he doesn’t allow himself the proper amount of time to rest each day. Sometimes he has to go to bed with the children at 8pm because his body simply can’t take the build up of tiredness over a few late nights in a row. He is nowhere near as bad as he was when he was in hospital, but I think his body now needs rest more than it ever did, and this was the first sign of it. By leaving him to rest when they did that day, the physios were listening to Marc’s body, which was clearly telling them he needed the morning off. It didn’t stop him being frustrated though.

An injustice

Writing this I feel like I’m doing Katie and her colleagues an injustice. I want to be able to write more about them. I know how much they did for Marc when he really needed them to. They helped him in ways that I could never have done and he is now able to walk and be completely mobile as a direct result of their work with him. But whereas on ITU I knew the staff well due to the hours and hours I spent there, in A5 I was barely there for an hour each day and never when the physios were on duty. So this post will have to suffice to tell that part of Marc’s story which was almost invisible to me.

Be certain though, that all the physios who worked with Marc both in ITU and on the ward are definitely among those other hospital staff placed on the ever groaning shelf in my head marked, simply, ‘Heroes’.

Happy Families

Once we had established a new routine for visiting A5, life began to settle down a little. We began to get to know a few of the nurses and the sisters, and our visits became more pleasant because Marc could ‘join in’ a little more each day. Having the children with me at many of the visits was both a blessing and a curse. They were certainly a distraction for Marc, and I’m certain that seeing them more regularly helped spur him on when his physio was difficult and painful, or when he was feeling useless because he couldn’t manage things for himself. But they took quite a bit of entertaining on the visits and were often bored.

Not that they were really much trouble – they are both pretty well behaved and I’m certain that they realised that the hospital was not a place to behave badly, but the ward was not a particularly exciting place to be, especially once they had visited once or twice and worked out how limited their options for entertainment were. We were only ever there for an hour at a time. Part of that time was taken up with the inevitable search for chairs which would hold all three of us: visitors chairs are often in short supply in the evening and the early bird catches the worm! Once we had located two chairs and pulled the large chair by Marc’s bed into a position from which the sitter could see and be seen, we would begin by asking Marc about his day.

Routine

There was never a huge amount for him to tell us. His days were pretty routine, and although he was making progress with his physios, it was very slow going. I knew that they visited him every day, that he would sit out in the chair for up to an hour or two now, which was great, and that they were beginning to get him moving, but other than that he really just ate meals, slept, received medicine and waited for us to visit. Interestingly, I never actually got to see him out of bed until he was leaving the hospital. I don’t really know the reason why, except that they sat him out of bed in the mornings, when there were no visitors to get in the way, and that he was back in bed by the time we visited in the afternoon or evening, and usually fairly lethargic because of the effort he had put into his physio.

Instead, we would try to tell him about our own days. We would take turns, and I would prompt the children to let their dad know about whatever small things had been going on for them at school or in their clubs that day. This process was by no means easy: if you try to talk to younger children you will know that often they struggle to speak to someone on the phone. You put the phone to their ear and the adult speaking to them has to prompt them with lots of questions, to which the answer most often is simply ‘yes’ or ‘no’. It is quite an art to get a young child to be chatty on the phone. And the ward was similar: a new environment that they were not used to at all. And they simply didn’t understand how the tiny, ordinary things that had gone on in their day might be of massive interest to their dad, who had been lying bored in bed looking forward to their visit all day. It took a lot of skilful questioning on Marc’s part and suggestive prompts from myself (‘Have you told Daddy about the…?’) to get any kind of conversation flowing.

Bored

However when I tried to start or continue a conversation with Marc, the children became quickly bored. This in turn led to them inevitably misbehaving, not terribly, but enough to affect the other patients on the ward, who also had visitors, and to require me to tell them off or gently remind them that we were in a public place. Part of me longed for Marc to be put back in the private room he had first occupied in the ward, although I knew that would isolate him even more during the long hours that we were not there. We did begin to take our shared family iPad (the only one we owned at the time) into the hospital and let them play on it, taking turns, for some of the visit. But I didn’t want this, my children’s only contact with their father, to take the form of them sitting silently by his side with their eyes glued to a screen and their ears plugged with headphones, simply to keep them occupied.

Our saviour eventually came in the form of Morrisons. Over the summer they had been running an offer which gave a away free packs of card games with every spend over £40 or so. We had picked up a couple over the past few weeks, the children taking turns to select which game they wanted, and we ended up building quite a collection. They were all very small and portable, travel sized games which we were capable of playing fairly easily in the limited space of an incredibly cramped hospital bay. Monopoly, Happy Families, Guess Who, had all been transformed into mini-card-game versions (some more successfully than others) and we discovered that if the children were playing games then they were far better behaved, and far less likely to run around or start arguing loudly.

Chair hustling

So our visits became more routine and settled. The children knew what to expect, as did Marc and myself: arrival, chair hustling, rearrangement of Marc’s bedspace and the small cupboard by his bed, playing card games, both children needing to be taken to the visitor’s toilet one after another (I thought this was quite nice as it was another distraction and left one child to sit and talk to their dad alone for a while), 5 or 10 minutes each playing games on the iPad, some talk of what had happened during our respective days before there was a replacement of chairs and a flurry of goodbyes as we left until the next day.

I did not take the children every day. I don’t think they could have coped. I don’t think I could have coped. Sometimes Marc himself was extremely tired and far less able to cope with two very active children and it became almost a battle, something to be endured all round. The children didn’t exactly look forward to going. Not that they didn’t love their Daddy: they just wanted to be able to see him somewhere other than a very public place where there were so many rules about what they could and couldn’t do. But this wasn’t possible, and they had already spent so long without him in their lives that I didn’t want them to become used to life without him in it.

Fragile

To begin with, Marc seemed completely inaccessible: he had the machine supporting his legs and making sure that the blood flow was consistent throughout his lower body, preventing blood clots. He seemed quite fragile and far away, and was certainly not able to extend his arms out towards us, nor did he have the strength for bear hugs. Slowly though, the machine was removed, he began to regain strength in his upper body and was more able to be cuddled. I remember the first time he suggested that one of the children sit on the bed with him. It was probably out of necessity: we had arrived too late that evening to grab enough chairs to have one each. But Marc suggested that one of the children sit up on the bed with him and, extremely gingerly, I lifted one of them up to sit beside him.

At first they both felt a little awkward, too long without any real contact with their dad had made their relationship seem awkward and strange. I was also terrified that they might hurt him, and we were terribly cautious around him to begin with, but ultimately this became a habit too: we would fetch one less chair and the children would take it in turns sitting with Daddy on the bed. And thus, through healing hugs and games of Happy Families, we began to rebuild our relationships.

Settling In

As Marc settled into A5, he began to adjust to his new surroundings. The nurses in the ward were mostly excellent, and the sisters I met were amazing: organised, compassionate, experienced, sensitive. With so many patients and so many different daily needs to attend to on such a busy ward, they had to be. There is only ever one sister on duty per ward at a time, and when you consider that A5 had four different bays filled with six beds each, plus several separate single rooms, that adds up to a lot of patients! But somehow both of the sisters I got to know managed to supervise the nursing staff who looked after the patients’ needs; organise the auxiliary staff who brought meals and did less ‘medical’ jobs; keep tabs on the doctors while they did their rounds and generally have an awareness of the condition and treatment of every patient in their care. I was totally in awe of them.

Polite and respectful

Marc was still incredibly immobile when he first arrived in A5, and this meant he was a lot of work for the ward staff, but I never heard any of them complain. Marc is generally an extremely polite, respectful man, and most of the staff didn’t mind attending to him because he would always thank them (not everyone does), and was prepared to wait for what he needed if necessary. Many of the ITU staff came down to visit him in A5, which I think is a real sign of how attached they had become to him. ITU, they tell me, is a difficult place to work, because there is very little ‘given back’ from the patients, as they are often unconscious or too ill to be very communicative. Quite frequently their patients are removed from the ward quickly, having been in ITU simply to recover from an operation or to have a specific drug administered. Sadly, many of the patients do not survive, as was so nearly the case with Marc, which means the ITU staff don’t even get to know their patient at all. For these reasons, nurses in ITU get very few chances to form any kind of bond with those they look after.

So the fact that Marc had spent so long in ITU, and been able to communicate with the nurses towards the end of his stay, meant that they were quite fond of him. He was, of course, one of their ‘success stories’: they had taken him in when he was severely ill and saved his life, then nursed him back to health to the point where he was able to be transferred to an ‘ordinary’ ward. This was a major thing for them, and I know a lot of them were anxious to see how he adjusted to life in a ward where he would get far less attention from the nursing staff. Also, I spoke to quite a few ITU nurses and they all agreed that they rarely got to see the result of all their hard work and care. Once a patient has left the ITU they are moved somewhere else or go home, and the staff don’t know what happens to them after that. Unless they have a return visit to ITU (never a good thing if they are going back as a patient) the doctors and nurses who cared for them have no idea what has become of them. I think that being able to pop in and visit Marc on their way around the hospital was really nice for them – they could see how much progress he was making.

Visiting patterns

It took a long time for me to see that progress though. I still visited Marc most days, although I knew that my summer holiday was coming to an end, and that soon I would have to make a decision about whether or not I would return to work in September, which would undoubtedly affect my ability to visit him. My visiting patterns in the new ward were quite different though. For starters, the children often came with me. Every visit was only for an hour, although it was possible to visit twice a day, once in the afternoon and once in the evening, if you wanted to. I took to carrying around a ‘hospital bag’, filled with supplies I regularly needed when we visited. It was put together over a long period of time, but contained some books and games to entertain the children during the often non-thrilling visits, a cardigan in case it got cold, a few snacks, the book I sometimes read to Marc, a bottle of water and whatever treat / snack / card or gift I had bought or received that day for him.

When I visited, the first thing I took to doing was plugging his phone in to charge, because he simply couldn’t reach behind the bed to do this simple task himself to begin with, and asking the nursing staff to take care of charging his phone regularly seemed too much to ask. Not that he was calling or texting me much: he was still fairly exhausted by even simple tasks like sending texts, but he was using his phone to surf the internet each day to help pass the time, and this drained the phone of its charge. If I remembered to plug the phone in at the beginning of a visit, it was usually almost fully charged by the time I left. Woe betide me the times I forgot, as I would have to leave it plugged in behind him when I left, meaning that he would have to wait until I returned at the next visit to unplug it, or ask a member of staff to do it for him.

Hugely skinny

Every day I tried to take him some kind of new drink or snack to try and tempt him to eat. He was still hugely skinny, and despite ordering meals from the hospital canteen, each day, he wasn’t putting on any weight. In truth, they often made him sick. His appetite was still incredibly small, his stomach struggling to adjust to eating solid food again. Add to this the fact that the hospital food was not great, and it isn’t hard to see why he wasn’t gaining weight. I don’t think he consumed very much of those meals, but I never saw him eating (mealtimes are scheduled well out of visiting hours for obvious reasons) so I wasn’t really sure what kind of calorie intake he was managing. I only knew that he hated the meals, so I tried to bring things in to tempt him whenever I could.

In truth, he was sick a lot during his stay on A5. Either he didn’t eat much, or he forced himself to eat more in an effort to gain weight and threw the food back up again. At this point no one was really weighing him, but now he was ‘out of danger’ and there were larger, healthier men sitting in the beds around him, it became clear how incredibly small and skinny he was, lying in the bed, his muscles wasted, able to do so little for himself for so long. I know that he looked forward desperately to the physiotherapists coming to see him daily, because it gave him something to distract him from the boredom and misery. He began to be lifted out of bed each morning and placed on the chair beside his bed to ‘sit out’, for longer and longer periods of time, building the length of time up so that he was able to manage more and more each day. This, at least was heartening. And slowly, very slowly, with an initial goal of being strong enough to be able to turn around in the bed and plug his own phone in, he began to make progress.

New Beginnings

Happy New Year! Apologies for the lack of communication so far in January. I’ve decided to write a new post once a fortnight now, so my tale will continue at a slightly slower pace. That sort of suits the story though, as once Marc moved to his new ward, things did progress quite slowly as he began to adjust to his new surroundings and continued to recover.

In mid-August 2014, at around 10.30pm, Marc was pushed out of the ITU and through the corridors of Warrington Hospital until he reached his new home: Ward A5. I didn’t visit until the next day, and found it extremely strange that my feet were taking a different route through the hospital after being so used to retracing my steps to ITU each day. It was closer to the hospital entrance, so a shorter walk at least, but this gave me less time to mentally prepare for seeing Marc each day, and I did have to mentally prepare, as often Marc’s mood was a sombre one, and I felt like I always had to be cheerful and upbeat to keep his spirits up.

A window on the world

There were many other differences between the two wards. For one, it had windows which could be seen out of (in ITU the windows are opaque and the rest of the world is completely locked out). This was a welcome change, as the world of ITU often felt very ‘removed’ from the real world. Being able to see out from the ward towards Lovely Lane, though the petrol garage across the road was hardly a beautiful view, made it easier to relate to ‘normal’ life again, for both Marc in the bed and me as a regular visitor. Windows were definitely a positive difference.

Sadly there were many negative differences too, and this is in no way meant to be a criticism of the NHS or the staff who work on the wards there. It is simply the way things are at the moment, in what is clearly a struggling health system. In A5, the beds were far closer to each other and ‘other patients’ intruded on each visit. By that, I mean that in ITU the curtains and the distance between each bed, plus the severity of the illnesses in there meant that you hardly noticed that there were other patients. In A5, you couldn’t miss them. Each bed had limited space around it, so at visiting time we had to be far more aware of squishing the visiting chairs close into the bed to ensure that the visitors to the other patients had enough space too.

Constant noise

The ward was far noisier in many ways too. Whilst ITU had been filled with the sounds of bleeping, whirring machines and buzzers on the many different types of medical equipment, it also had a certain strange peace borne of the fact that most patients were too ill to speak much, if at all. Also, even the visitors spoke fairly quietly, out of respect for how ill the other patients in the ward were.

A5 was just filled with general everyday noise. Conversations taking place between the nurses and auxiliary staff on duty, between the nurses and patients, between the doctors discussing cases and instructing student doctors on their rounds. Beds and wheelchairs being moved up and down the wards by porters, visitors chairs being dragged around to the various different bays, the meals trolley bringing up food to be distributed, mobile phones ringing, televisions or radios being watched by the different patients. The list of noises goes on and on. The hustle and bustle of the ward, especially during the visiting hours where so many different people come and go, was non-stop.

Frustration

Marc was in a bay with five other beds, most of which were occupied. The bay was mostly full of older men who were waiting for or recovering from surgery. Marc was always by far the youngest one in there. Coupled with the fact that he could still not move independently, it made for a difficult time. He had very little in common with the other patients in there, most of whom were at least twenty years his senior. He watched, frustrated, as many of the other men in the ward were able to get up and walk to the bathroom when they needed to. He waited for the single nurse in charge of his bay to come and administer drugs, to empty his catheter and stoma bag, to bring him a cup of water or adjust his bed when he was uncomfortable. He could do none of this himself. He would often press the buzzer to alert the nurse that he needed something and she would be unable to attend to him for several minutes, sometimes up to twenty.

I always have to remind myself that, when he left ITU, Marc was unable to get out of bed and walk anywhere. He could barely move his arms. He spent many hours feeling extremely frustrated in his new ward, as he could not possibly get the same level of support from the nurses there as there simply weren’t enough of them. Marc still needed a lot of help though: his legs were still supported by special air-filled supports which whirred as they filled and deflated, ensuring that there was a constant blood supply to his feet and that he didn’t get blood clots. He was still on a fair few drugs, and sometimes in pain. He bitterly resented not being able to do anything for himself and hated being dependent on others for everything. He was extremely bored because he couldn’t even really hold a book or a laptop for any length of time without his arms tiring.

Fearful

I was constantly afraid in those first few days in the new ward that Marc’s condition would suddenly deteriorate and there would not be anyone there fast enough to save him. I don’t believe, looking back, that he was in any major danger at that point, but the way he had first become ill, so suddenly, without warning, makes me fearful to this day of him becoming so ill so quickly again. I worried that he would die before anyone got to him to discover anything was wrong. It sounds melodramatic, but whenever Marc is ill now I worry about him far more than I used to, and I don’t think that will ever change.

It didn’t help that he was back on the ward where he had first started when he came into hospital. He was right back in the place where I had first been called in the middle of the night when he had crashed and been taken to ITU at 3am. The isolation room where he had first been housed was right across the hallway from the bed where he now lay, and to begin with my mind was filled with horrific memories of that night every time I entered the ward.

Seeing the positive side

But despite these new surroundings and different challenges, there were other positives. The children could now visit Daddy in more ‘normal’ surroundings without all the strange machines and equipment that frightened them. Visits were limited to an hour at a time, which meant that the children could be fairly easily entertained and Marc got to see them feeling more comfortable and more like themselves. It also took a bit of the pressure off me, as I no longer felt required to sit with Marc for up to three hours at a time, a task which some days had become a real challenge.

But I felt guilty. I’m sure Marc won’t mind me saying this, but I found the extremely long visits in ITU very difficult some days. It was a massive relief for me not to have to try and think of things to say for such a long period of time each day, when Marc had little to add to the conversation. I can’t imagine what it was like for him, being in the ward hour after hour by himself, but at least now there was more going on around him: other patients he could actually talk to, people being taken away for and brought back from operations each day, nurses and auxiliary staff who would keep up a cheery chatter throughout a lot of the day and regular daily visits from doctors and physiotherapists in what was a much more normalised environment. I think it took him a while to adjust, but somehow he managed it.

A new era

The biggest task of his first few days in A5 was the purchasing of a 30-day subscription to the bedside phone, television and radio package, which at least meant that during any idle hours Marc was able to be entertained in some way. Deciding how long the package should be was the most tricky part. We hoped Marc would be home with us in less than a month but, in reality, that was fairly unlikely. The television came as a real relief in terms of occupying Marc’s time. I could even call and speak to him if I wanted to, although I didn’t do this too often to begin with.

And with this began a new era in the story of Marc’s recovery, one which was no less frustrating than the one in ITU, but was definitely different, and filled with a whole host of new challenges, beginning with Marc adjusting to being back in the real world once again.

Christmas Post

It seems quite fitting that my last post of the year (I’m not writing one next week – we will be enjoying our Christmas holiday as a family!) should concern the momentous occasion when Marc was actually permitted to leave ITU. It was August 7th and had been a long time coming. 43 days to be precise.

The nurses in ITU had begun to prepare us for the move. Mostly, this involved warning us how little support Marc would have once he was on a general ward. What we also hadn’t realised was that the visiting hours on these wards were much reduced, which meant that we wouldn’t be able to see Marc for as long each day. On the positive side, I knew that visiting a general ward would be far less stressful than ITU, and hoped that the children would cope with it better and therefore be able to see their dad more regularly.

Working hard

As with everything else, the transition between ITU and the ward was not as simple as it might seem. There were a number of facts to consider. Firstly, the doctors wanted Marc to be as capable as possible of doing things for himself before he was transferred. This meant that, as well as ensuring he was able to feed himself and breathe without the aid of the ventilator, they wanted him to be as mobile as possible. The physiotherapists worked incredibly hard with Marc on the run up to him leaving ITU to try and make sure he would cope with life on a general ward where he would have a single nurse and a couple of auxiliary assistants per two bays of six beds rather than a nurse assigned to two patients, as was the case in ITU.

Another factor the doctors considered was the removal of Marc’s catheter, which had been put in on his entrance to hospital in June. They did attempt to take it out several times before he left ITU, but I’m sure it will not come as a surprise that his bladder, like everything else in his body, had not recovered sufficiently to function by itself yet. In fact a lot of time passed before Marc was able to finally manage without a catheter. So Marc was transferred to the new ward with his catheter still in place.

A sudden realisation

The other consideration was Marc’s stoma bag, and the nurses began to prepare Marc for the time when he himself would have to manage it instead of them. I clearly remember going to visit Marc one day towards the end of his time in ITU and finding him quite upset. Although he had been told several times that he now had a stoma bag in place, I don’t think the reality of this had sunk in with him, probably because he had so many other issues to deal with. But on this particular visit he had made the sudden realisation that he had the stoma, he would have to learnt to cope with it, and there was a distinct possibility that he would have it for life.

Now I had read a little about stomas as I had been aware of it for a long time, and I knew that some were reversible and others not. Up until this point however, I had not asked anyone about whether Marc’s was permanent. I can’t explain why. Perhaps because there were so many other issues to deal with. Perhaps because I saw the nurses far more regularly than the doctors theses days, and I wasn’t sure if the nurses knew the answer to my question. I suspect it was because I wasn’t ready to deal with the answer until then. But on that day, when Marc was visibly upset about it, I went to seek out someone who could answer my question.

Coping admirably

This is not to say that I didn’t think we could cope if Marc had a permanent stoma. We could have done. Marc coped admirably with it once he learned how to and managed it very well for almost a year after his initial illness. Many people have them without others even realising, and a stoma is something which can be managed and coped with. But the initial shock of Marc realising he had one without any kind of warning was difficult, and to begin with we both needed time to adjust to the idea. Marc had not fully realised that he had one, he’d been so ‘out of it’ for so long, and I think I had conveniently ignored it and not dealt with it, because there were so many other issues to focus on.

That day I sought out a doctor, one of the ITU medics. When I asked him whether the stoma was reversible, he didn’t actually know. He hadn’t been involved in the initial operation and, while Marc had been under his care for months, he had been dealing with the more pressing issues like keeping Marc’s blood pressure and temperature stable. He said he would find out for me and, give him his due, within the visit he came back to speak to me. He told me that when Marc had undergone the initial operation, part of his bowel had been removed and the stoma had been put in, but it was just as reversible. That the initial doctor who had done the emergency operation to save Marc’s life could just as easily go back in and reattached the two ends of the bowel together. I can’t tell you how much I marvel at what today’s doctors are capable of.

A warning

I also remember the ward sister who was on that day, Lesley (strangely she was the one who had been on duty the night Marc was brought in too), taking me to one side and telling me that I should make perfectly sure that Marc was fully well before he had any kind of further operation. She said in her experience that people who went for bowel reconstruction surgery early, because they did not deal well with the reality of having a stoma, were twice as likely to have issues during the operation. Marc had been very very ill. He was still ill, still recovering, and in her opinion would not be ready for another operation for a long time to come. “Don’t let him rush into it,” she said, “No offence, but I do not want to see him back here in ITU.” I took her at her word and made Marc promise when I spoke to him about the reversal that he would not agree to anything until we felt that he was sufficiently strong enough.

So, with most of Marc’s major issues being resolved, the nurses simply told me one day that they were waiting for a bed to transfer him to. I was completely floored when I visited and they told me he would move that day. I knew it meant a huge upheaval and was nervous about what was to come. I couldn’t imagine that Marc was ready, or could cope with, life on a ward where he had so little support and would get such short visits from us, having had us sitting by his bedside for hours at a time each day. But moving him they were.

Extremely nervous

As with everything else, it didn’t happen smoothly. We were told on a particular day that a bed was becoming available, and Marc and I spent an extremely nervous visit that evening waiting for him to be transferred somewhere else. His bags were packed (not that he had that much in the way of possessions in ITU, he didn’t really need much.) We sat together for a long time, waiting to be told when he could go. I expected that I would walk down with him and settle him into his new ward. I expected fond goodbyes to be said to all the ITU staff who had cared for Marc for so long. In reality I stayed until way past visiting hours had finished, eventually leaving at around 9pm, imagining that he would instead be transferred tomorrow. Then I got a phone call at 10.30pm to tell me that Marc was now in a new bed on a new ward elsewhere in the hospital.

As ever with everything that had happened to Marc, there was no planning for it. In the end, it simply happened because the bed became free and ITU probably needed the room. In one way I felt let down: it should have been a momentous occasion, Marc finally getting out of Intensive Care after more than forty days. In the scheme of things though, it was a huge step forward and one which propelled Marc into a whole new territory of recovery, which although just as challenging in its own way, was the next terrifying step we needed to take to ensure that we finally got the old Marc back.

Out of the woods

I hope you all have a wonderful Christmas. Enjoy the food, the gifts, the parties, but most of all, make the most of the time you have together with the people you love, be they friends, family or both. Thank you for reading my blog this year. I hope you have found it interesting and maybe a little uplifting at times. The Littlemore Family have a fantastic Christmas planned, starting today when we are all off school and work and have lots of time to enjoy everything the festive season has to bring. At last I feel like we can properly enjoy Christmas because Marc is pretty much ‘out of the woods’, and you know what?

I can’t wait.

Getting Out and About

It was round about this point that Marc began to get a little stronger and was more able to complete his exercises. He was always visited daily by the physios and, like I have said before, their work with him often went on in the background of everything else. His physio was also the thing which was disrupted if Marc was feeling ‘off’ at all: if he had been sick after a meal or had not managed a good night’s sleep. He was managing to ‘sit out’ for longer periods, I was told, although more often than not he did this in the mornings and by the time I arrived to visit he had become tired and was back in bed.

This was probably nicer for him because, to begin with at least, he found sitting out quite difficult, and I imagine that he wanted to concentrate all his energy on doing that rather than trying to uphold a conversation with me at the same time. So by visiting time he was tucked back up in bed and ready to listen to me read to him or bring him the news of the day. But the time periods he was managing to sit out for were definitely increasing, at least on his ‘good days’. They were still having to use a hoist to get Marc out of the bed in the first place, but at least keeping his head up and supporting his body in a seated position was becoming easier.

A big adventure

This also led to the possibility of him being taken out and about around the hospital in a wheelchair. For a man who had not seen the outside world for over a month, this was something quite special. To begin with the physios took him out, just for short walks around the corridors. Eventually it got to the point where we could take him out ourselves, and I distinctly remember Linda taking him out in the wheelchair and looking on it as a big adventure. I don’t remember ever taking him out in it. I’m not sure why. It seems strange, looking back, but perhaps during my visits he was too tired or maybe he just didn’t trust me in charge of steering a wheelchair!

The physios began to talk about taking Marc to sit outside in the gardens of the hospital (there aren’t many, but they do have a few small courtyards which they make an effort to keep looking pretty). That way he could feel the air on his face for a while and see the sky. I have no idea how this felt for Marc. He had literally spent more than thirty days in a very false environment with little natural light and a falsely controlled, permanently cold, temperature. Just the thought of him being able to be outside for a short period of time seemed like a major step forward for me, so for him it must have seemed almost overwhelming.

Variable energy levels

In practice I think they only managed to do it once or twice. It would be lovely to think that he could have sat out there all day, every day now he was well enough to do so, but the physios had other patients. Marc needed supervision, as he definitely wasn’t up to walking yet, or saving himself if he fell out of his wheelchair. Also, other things got in the way. Marc’s energy levels were very variable: often he didn’t have the energy after completing the morning exercises with the physios, or he had slept very badly, and couldn’t cope with the idea of going outside.

And there was always his state of mind. I remember thinking once he was moved to the bed further down the ward, away from the nurses’ station, that he would be happier, but if anything he was more miserable. The growing realisation of what had happened began to dawn on him. He was alternately bored and in pain. He wasn’t able to do anything for himself to begin with and had to depend on other people to do everything for him, which he hated. When he had been in a critical condition in the bed next to the nurses, he had not been aware of much at all, other than the pain he was experiencing. As the pain caused by the life-threatening illness abated, the less serious issues surfaced and Marc found himself having to deal with them one by one.

This took its toll, and I can only imagine how hopeless he felt some days, how helpless, how alone when we could not be there for him all the time. So he was often quite depressed during the period he spent in Bed Three. Often when I came to see him I would spend the majority of the visit trying desperately to cheer him up, to lift his spirits somehow. I can only imagine how he felt every time I left him. I often found myself longing for a visit to end, not because I didn’t love Marc or want to support him, but because the effort of trying to make him happy was so draining. But the visits always did have an end for me, whereas his visit to the hospital must have seemed never-ending.

Change the station!

Not to say that the staff in ITU didn’t do their best to keep him entertained. In Bed Thirteen, when he first came into hospital, they began to put the radio on for him so he had something to listen to. In this bed he spent a lot of time asleep or unconscious, so a radio made more sense. It was very well meaning, but made me laugh when I came in and found him listening to a station which played lots of easy listening, crooner-type hits, exactly the kind of music he would find dull and boring. Marc is a hiphop fan and loves dance music, so I could imagine him screaming inside his head for the nurses to change the station to something he would prefer!

In the second bed (I think this one was Bed Three), he actually got a television and I would often find him watching it when I came to see him. Not that he was ever particularly excited by the programmes he could watch: daytime television is his idea of a nightmare. He also had a very reduced concentration span at this early point. So much was going on with his body and he had so many different things to deal with that he did not always deal well with too much additional stimulation. I suggested bringing in the Ipad: he is a real ‘techie’ and at home is never very far from his phone, laptop or tablet, but he rejected this idea and again, I don’t think he could cope with the idea of any extra stimulus for his brain. Added to that, as he pointed out to me, he couldn’t even deal with holding it up for very long – his arms were simply not strong enough.

Tormenting himself

I remember feeling a little rejected by Marc when I suggested the Ipad idea. I had been so convinced that having the tablet there to play games on would pass the time for him and make him happy, that when he explained that he didn’t want it I was a bit upset, although I can’t really explain why. In the end, he spent several hours each day with the television on, but he rarely enjoyed watching anything. He often ended up with cookery programmes, which he enjoys, but these tormented him because, in reality, he could hardly keep food in his stomach!

But every day he got a tiny bit stronger and more able to do small things for himself. The physio exercises began working and he managed tasks like manipulating knives and forks and operating the television remote control. Instead of having one to himself, he now shared a nurse with the patient in the bed next to him (much to his disgust). I think it was the nursing staff’s way of preparing us for how different things would be in terms of the level of support which would be provided when he moved on to a general ward.

Eating Again

The second time I took the children to visit Marc in ITU was a much more successful visit. This time, because he was signed off and able to eat proper food again (albeit mostly liquid food to begin with), the tube had been removed from his nose. He had now been told that he didn’t need the intravenous drip to feed him anymore as he was able to eat for himself. It turned out that Daniel had been most bothered by the tube up his dad’s nose, so without that there, both children managed a calm, fairly pleasant visit with their dad. Marc was visibly brightened by their presence, we had brought things for the children to do when they became bored, and we didn’t stay for too long, which seemed to be the best plan all round.

Marc was now able to choose food from the hospital’s daily menu. He had to have a slightly amended version as he wasn’t quite up to eating roast beef and yorkshire pudding as yet, but nevertheless, the ability to select meals from the menu each day no doubt gave Marc something else to do, and was also something which allowed him to have some control over his day, a thing which had been very much missing before this point. Visiting hours never really coincided with mealtimes for obvious reasons, so to begin with, I wasn’t aware of an issue, but after a few days Marc, and the nurses, began to report that he was quite often sick after eating.

Another battle

And there began the next huge milestone for Marc to overcome. Eating. I know we have been through the ‘breathing again’ agony, and also touched on the topic of ‘beginning to walk again’, but Marc’s eating is by far and away the most major ongoing battle he has had to face. At first, we didn’t think anything of it. He hadn’t swallowed solid food for over a month, so it was no wonder his stomach was complaining at the shock of having to digest things which were a) no longer simply liquid and b) entering the stomach via the mouth, throat and oesophagus rather than a thin tube from the nasal cavity.

Marc had so many other things going on (and eating properly was such a novel thing after so long) that the sickness was simply another symptom recorded on his notes and left alone. But as the days went on and the sickness became a regular thing, I began to worry. What if he couldn’t digest proper food anymore? Was he destined to be tube-fed forever? How would he ever manage to put on the weight he had lost if he couldn’t eat properly? What kind of diet could we put him on that he might tolerate? The questions went round and round in my head.

Starving

When my son Daniel was born I struggled to breastfeed him, to the point where he had not put sufficient weight on by the time he was a month old. I became utterly terrified that he wouldn’t survive because he was not getting enough food to keep him alive, let alone allow him to thrive. It sounds ridiculous writing it down now, thinking of my 1 metre 40 tall (but still skinny) boy. With Marc, I had a similar feeling. Eating is something we all take for granted. We mostly enjoy it, and the problem most associated with eating (in my experience, at least) is our love of food which causes us to constantly overeat. But what if a stomach can’t tolerate eating food to the point where a person starves to death? That was my very real fear.

The doctors had similar (although less emotion-driven) concerns. They prescribed a number of different anti-sickness medications to go alongside his daily intake of food. I distinctly remember going in each day and asking about which new one they had tried and whether or not it had worked. Had he been sick that day? Were they satisfied that he was getting sufficient nutrients without being fed by the tube? I became obsessed with it, just as I had with the amount of time he spent on the Drager machine when he had been learning to breathe. That should have been a lesson to me really.

A crystal ball

Recovery from a serious illness is not a rapid thing. If I’d had a crystal ball back then which allowed me to look into the future, I think I might have been able to relax. Because most of the issues Marc had during his recovery were cured by a single thing: time. His trauma was so sudden, so severe, that his body required not days, not weeks, not even months to recover, but years. Looking back I can see that all of the difficulties he has experienced have been, on the whole, overcome, but not without a great deal of time and patience. The human body is an amazing thing, capable of healing itself from a serious amount of damage, but not instantly.

So we battled on, despite the fact that none of the anti-sickness drugs seemed to have any effect. Every day we attempted to analyse which types of food went down better and which ones caused issues with Marc’s digestion, but in the end there was no discernable pattern. It simply made no sense.

Natural to struggle

When I take a step back now it seems quite natural that Marc would struggle with eating. The initial trauma he had suffered had been in his gut and the emergency operation had been performed on his bowel. The Strep A virus had been identified from fluid taken from his stomach, so the entire problem had originated with Marc’s abdomen. It is no wonder that his stomach and digestive system took the longest time to recover. I also often forgot that the nurses were also dealing with Marc’s stoma bag daily: another added issue connected to the workings of his digestive system that can only have added more pressure to the whole process. Really, the problems which Marc experienced made complete sense, it was just that in the midst of all the trauma, I desperately wanted one small part of his recovery to be simple and go well. To just, happen, without causing any issues or concerns, or completely terrifying me. And when it didn’t, it was difficult to handle some days.

Looking on the bright side, when Marc started to eat properly again, the medical staff began to discuss his potential release from Intensive Care. This meant a change, but a positive one in terms of him being closer to getting out of hospital altogether and coming home. I couldn’t imagine him home at this point though. Despite desperately wanting him to be there, I found it difficult to see how he could function in the house, how I could function looking after him in addition to myself and the children, when he could barely sit upright without support, let alone walk. But that was a concern for another day, so I blocked it out and focused on the idea that every little bit of progress he made was taking us closer to him being back to the ‘old Marc’.

And it took me a long time to realise that he would never, could never, truly go back to being the ‘old Marc’. Instead, we would have to create a new kind of reality to exist in, in spite of all that had happened to us.