First words

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

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

A step in the right direction

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

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

Reassured

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

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

Gritted teeth

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

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

Very much in the dark

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

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

A huge leap forward

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

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

Visiting Daddy

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

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

Wildly curious

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

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

But for the children, he simply lit up.

Missing him for a month

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

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

A huge shock to the system

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

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

Staring

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

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

Meltdown

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

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

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

Keeping their mind off things

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

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

Squeamish

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

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

A Balancing Act

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

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

Lifting his spirits

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

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

Breathing independently

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

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

Looking far from his best

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

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

A big decision

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

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

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