Midnight has come and gone and the rest of the night will, hopefully, be quiet. Most of the preparation for tomorrow’s day shift has been done, I’ve just done my round and all the children are now comfortable and sleeping. The next hours will now be spent with the struggle to stay awake, another couple of rounds, reacting if some of the monitoring equipment should sound an alarm before the final round begins at around five thirty, making the last preparations for the morning, handing over to the day shift and then, finally, going home to sleep shortly after eight o’clock.
The last night shift before beginning two and a half weeks holiday. The last night shift of many – this month and in the past couple of months. I’ve written about night nursing before here. It’s part of the job and it does have some advantages, despite all the downsides. The larger part of what I’ve posted here in the past two years has been written in those quiet hours when my patients have been quiet as a personal antidote to the basic diurnal instinct of my body to use the darkness for sleep.
We have five children here at the moment – all of them seriously, chronically ill. Two of them are on respirators at the moment, including Jenny. I’ve written about her a couple of times before (here and here). Jenny is in good form at the moment. Her basic condition remains the same (deaf, facial paralysis, inability to swallow, etc.) but she is free of the respirator for most of the daytime, is soaking up sign-language like a sponge (much more quickly than most of us can learn it) and refuses to regard herself – or behave – as anything other than the intelligent, lively, fun-loving four year old which she is. She generally sleeps the night through and when she awakes (like nearly all kids of her age, she usually wakes quite early) is quite happy to remain in her bed, playing with her Nintendo until the day shift arrives and she can enthusiastically throw herself into a new day.
There’s an alarm. Lisa has problems. Too much phlegm. A bit of suction and her bronchia and lungs are free again; her blood-oxygen level back to normal. Lisa has been having a lot of problems in the past couple of months.
Lisa will be twelve in a few weeks and I have known her for a long, long time – over ten years now. On the day before her first birthday she drowned. Having been pulled out of the water, a doctor spent forty minutes working on her before he succeeded in getting her heart going again. Forty minutes clinically dead. More than long enough, unfortunately, for Lisa’s brain to be severely, irrevocably damaged by lack of oxygen. Since then she has been in a
(PVS). Persistent Vegetative
I’ve been working with people diagnosed as being in a PVS for around eleven years, on and off. Nearly all of them are “victims” of the wonderful progress medicine has made in the past half century – a progress which is still a long way from an impossible perfection. What do you do when you pull a lifeless person out of the water? Everything you possibly can to bring them back to life, of course. Heart massage, defibrillation, cardiac adrenalin injection; and if it doesn’t work the first time you keep trying, increasingly desperate, until something works or you finally give up.
In retrospect – and everything is easy in retrospect – you can argue that they should have given up on Lisa earlier. I’m not in a position to make any kind of judgement in her case; I wasn’t there. Sometimes people can be brought back, with moderate abiding damage, or no lasting damage at all. And which one of us can condemn a team which was led by that fundamental human instinct to struggle for the life of a child to go on trying beyond the limits of what was sensible? In the end, they succeeded – and that success gave rise to a tragedy.
Our brain is continually working, and therefore continually needs energy, energy provided by the chemical reaction between glucose and oxygen; basically burning sugar. So the brain has to be continually supplied with these ingredients and if this supply is interrupted for more than a few minutes, brain cells start to sustain damage and die. At a certain stage, this damage becomes generalised and the results become irrevocable. The problem is that no one can say beforehand just when this stage has been reached.
In Lisa’s case it had been reached. After she had been stabilised, MRI scans showed that large areas of her cerebral cortex (what is often referred to as “grey matter”) had been severely damaged. The cerebral cortex is that part of the brain which, experts agree, plays a key role in memory, attention, perceptual awareness, thought, language and consciousness. But she was not “brain dead” and her brain stem was functioning fairly well, so that, for example, she was breathing and controlling her body temperature normally. With a tracheotomy tube (largely to facilitate the suction of phlegm and saliva) and a feeding tube, she was able to survive autonomously.
And so she has, for nearly eleven years now. What do we know of her inner world? Very little. While large areas of the brain responsible for her essential self-awareness just aren’t there, even this fact allows us to reach very few conclusions. Developmental neurology tells us that the development of the brain is not complete at birth, but that the final “hard-wiring,” the completion of the building of neuronal pathways and connection networks, goes on until around the end of the third year of life. Though this means that significant portions of Lisa’s brain did not reach a final stage of development, on the other hand it also presents the possibility that her severely damaged brain was still in that pliant form where it could develop alternative pathways and networks (something that would be impossible in an adult brain).
Lisa lives in her own world – most probably a world of an eternal present, without past and memory, hope and future. On some levels she seems to be aware of her surroundings. She likes a quiet and relaxed atmosphere and reacts negatively to stress and turmoil. She may not be rationally processing her environmental perceptions but she does seem to register them on other levels, in other ways. Anyone who starts to work with her learns this very quickly. You do not go into an encounter with Lisa in a tense, stressed, wound-up state. She will sense this immediately and react with stress herself. You have to relax, be calm and self-assured because she is extremely perceptive on an emotional level and will register your mood quickly and – basically – mirror it back to you. Working with her is a bit like a Zen exercise; you have to leave everything else outside, concentrating on her alone, moving into her world of the ever-now, letting the connection between what she’s feeling, and what she’s needing, and what your professional judgement tells you can be done, develop organically, at a level almost beyond thought, moving seamlessly into action which is for her and the situation in which she finds herself inevitable and right.
If you’re lucky. Sometimes nothing works. And, worryingly, such situations have been increasing in frequency recently.
For Lisa is coming up to her twelfth birthday and the first winds of the developmental storm known as puberty have started to blow through her body. It is a storm which is an extremely complex interaction of all sorts of hormones, including hormones produced in the brain. It is also a cascading process, where one development sets lots of others going and where everything is connected to everything else.
Puberty is stressful enough for a normal teenager. For Lisa, whose capacity to deal with stress is minimal, it threatens to be a real horror trip. Living in her eternal now, she has no possibility to rationalise or relativise what’s happening to her – she is completely defenceless in the face of all the hormonal and developmental gales which are starting to blow.
We are aware that she may not survive it.
For we have begun to realise that the damage to her brain may be accelerating, that ever more of it is atrophying. Benzodiazepines (like Valium), which used to help her with seizures and stress when she was younger, aren’t working. The doctors suspect that the relevant receptors in the brain just aren’t there any more. It may well be the case that even morphine won’t work (we haven’t tried it yet). The next thing planned is a CT scan (possibly also MRI) to try to get a picture of just what is going on in her head. Not that it will really make much difference; Lisa’s situation is far beyond almost anything that medicine can do.
After so many years looking after people in a PVS I do not make ethical judgements. Lisa lives and – for as long as she lives – she is a precious human being who needs and will get all the support it is possible to give her. When she can no longer live, she will leave us. I will, hopefully, be able to say that her living was good and her dying good also.
The last night shift is over now. Lisa had a bit of stress, but I was able to help her and she’s peaceful now, her blood oxygen level good, her pulse around eighty beats per minute, her muscle tone fairly relaxed (for her, anyway; one of the results of her condition is a generally sharply increased muscle tone – spasticity). She’s probably asleep. It’s not always that easy to tell as her eyelid reflexes don’t work; Lisa sleeps with her eyes open.
I do it with my eyes closed. During the daytime when I work nights. For the next couple of weeks I can live like a normal human being. Whatever normal is.
Pictures retrieved from: