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 Persistent Vegetative
State
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:
I can't express the depth of which I respect you for your profession and how you carry out your work.
ReplyDeleteThis was heartbreaking to read. I try to imagine Lisa's parents and the tragic feeling of wanting things to have turned out differently. The regret.
So beautifully expressed and written...Thank you.
ReplyDeleteAs every you write beautifully about a sensitive subject. I'm not sure I could do what you do.
ReplyDeleteOnce again, I'm impressed by your understanding matched with deep compassion. For many years my husband worked as a surgical technician at a children's hospital in Portland where he met and interacted with a large number of kids who would never grow up to live what most of us consider to be normal lives. He always knew how they were feeling and what they needed most before their surgeries; he became friends with many during their often long recovery periods and re-admissions. During a period when I was disenchanted with my own position at the university hospital next door I accepted a position there working on the patient care floor during the day shift. I lasted only six weeks before returning to my former job.
ReplyDeleteI hope you have a wonderful holiday on that fabulous island on the Aegean Sea. If you see Crow, don't forget to pedal.
ps: Numb is a favorite :-)
Thank you for that Francis. Yet another excellent post. It is, I believe, good and healthy for me to be shaken out of the arrogance of ignorantly believing that my generally contented, cosy, comfortable life conforms to a universal standard of what a life is.
ReplyDeleteThanks for this thoughtful piece, Francis.
ReplyDeleteYour observations perfectly match my own brief experience of severely brain-damaged children. I wrote it up in this post.
"Attempted Essays" has been included in this weeks A Sunday Drive. I hope this helps to attract even more new visitors to here.
ReplyDeletehttp://asthecrackerheadcrumbles.blogspot.com/2012/05/sunday-drive.html
Francis, this was not only caring and moving, it was very informative and helpful. My husband's brain (Acquired brain injury) is also atrophying, fairly rapidly. We almost lost him twice last year to pneumonia, and he was intubated and put on oxygen. From midnight until 8 a.m. when the Dr arrived for rounds, apparently he had not had oxygen levels checked. When Dr arrived it was 40%. The Dr immediately ordered moving to ICU and intubated him.
ReplyDeleteI asked my brother-in-law how long we were going to put my husband through this. No answers at this time. The daily struggles of caring for a man who walks around with very little short term memory,, but very fluent in his language and brain function, is a dichotomy that confuses me constantly. We are now at the stage of one thing at a time. His level of functioning has dropped considerably this year. And yet, he is charming and cheerful. Often more so than me. I get overloaded managing this, and he just goes to sleep. Enjoy your well deserved vacation. I think I need one, too!