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.

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4 thoughts on “Independence Day”

  1. WHAT AN ORDEAL! Pluses and minuses to no longer being critically ill! Understandable mixed feelings. Thank goodness the worst is now behind you!

  2. Clare, I am sure as you are writing each installment that you must wonder how you all coped with the trauma that you have been through. It is amazing what the human body can withstand.
    I feel that you have all been very strong in getting to this point and you are all still having to cope with different obsticles as Marc slowly improves.
    You have my total admiration and respect for how you have all come through.
    It is so nice to see Marc getting stronger and healthier each time I see him. God bless you all.

    1. Thank you for your continued support and kind words Anita. it really is very much appreciated. I’m not sure how we managed to come through it all honestly, I suppose when you are placed in that kind of a situation you have little option but to deal with it. So glad we are through it now though. 🙂

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