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.