Long Night's Journey - Part three

Continues...

Gradually I settled into the routines of night shifts.  Uncluttered by the day throng of visitors, scheduled procedures, phone calls and the daily round of dramas, nurses on night shift had more time to focus on the routine needs of their patient.  They were not as distracted by the demands of visiting specialists, ancillary staff such as dieticians, radiographers, speech pathologists and other itinerant floaters.   

I came to know the nurses better at night.  I heard of their experiences, ambitions, the rigours of shift work, even their love lives.  I demonstrated a few yoga asanas to some to relieve lower back pain.  One dedicated soul asked me if there were yoga manipulations that could help the inner workings of unconscious patients.  I showed her a couple of gentle twists that would greatly relieve wind discomfort.   

The nurses' work is physically and mentally demanding – adjusting patients, lifting equipment, constantly on their feet, concentrating for twelve hours while attending to the minutiae surrounding equipment sterilization, fluid sampling, patient monitoring, drug and nutrition maintenance, patient hygiene and general care, bed cleaning and sundry other tasks.  They were always cheerful, sympathetic and caring.  They shooed wolves of woe away from my door many times.  I would have despaired without this extraordinary group of men and women.

As the days rolled on nasty side effects became manifest. The most accurate measure of arterial blood pressure (BP) involved puncturing the artery with a micro-puncture needle or a catheter-over-needle cannula assembly.  

After the second craniotomy, maintenance of an accurate arterial signal became problematic.  Carolie’s arteries seemed formless as fluid swamped her metabolism. I will not attempt an exposition of the technical complexities underlying this problem.  Suffice to mention maintenance of the line frustrated many.   

To begin with, I had to leave whenever a registrar and nurse took on the task of line replacement.  The more familiar I became with ICU processes, the more confident the staff became in my ability not to wilt. I was part of the furniture, witnessing radial artery cannula replacement several times. The meticulous attention to sterilization and preparation was fascinating.  I was relatively sanguine about the process, until Carolie’s arterial stability sharply deteriorated. 

On several occasions, I watched registrars ‘farm’ her illusive arteries unsuccessfully for hours, trying to secure the line assembly.  A senior registrar laboured for several hours and got nowhere - his was the last attempt.  It was terrible to watch.  He tried several sites in both arms and then made a final sortie in the femoral artery located in the groin.  His failure left him a little perturbed, declaring he had never seen anything like it before.   

Non-invasive but less accurate methods of monitoring BP sufficed from this point.  Again, Carolie’s response to treatment had taken a mysterious path and baffled her treatment team.

Close monitoring of BP is a critical diagnostic tool in treatment of SAH patients.  The pressure must not fall too low as this has implications for blood circulation and vasospasm, nor must it go too high, as this is equally dangerous.  Carolie’s was often up and down.  She frequently turned febrile, which meant more analgesics.   

The team discovered 1000mg of paracetamol sent her BP plummeting.  She was an extremely rare example of the phenomenon.  Catch 22:  not enough paracetamol – slow reduction of body temperature; too much paracetamol – rapid drops in BP.  I had parroted her susceptibility to drugs to anyone who would listen, now writ large in this fine balancing act. 

The external ventricular drain or EVD revealed another nasty conundrum.  Wikipedia explains

EVD is a device used in neurosurgery to relieve raised intracranial pressure and hydrocephalus when the normal flow of cerebrospinal fluid (CSF) around the brain is obstructed. This is a plastic tube placed by neurosurgeons and managed by ICU nurses … to drain fluid from the ventricles of the brain, and thus keep them decompressed, as well as to monitor intracranial pressure.

I discovered the cranial vault is similar to a rigid box. The volume of the three components within the skull (brain matter, blood and CSF) must remain equal.  To avoid a spike in ICP an increase in one component is offset by a decrease in another.  The juggling act is fraught with danger.  In Carolie’s case, a closed sterile system allowed drainage of CSF via a silastic catheter tip that rested in the anterior horn of her lateral ventricle. 

The system enabled nurses to check the rate of flow and conduct sterile CSF sampling. As any foreign object such as a tube in the brain presents a high-risk source of infection, nurses observe strict protocols.  Pathologists tested the extracted fluid for blood culture analysis.   The EVD was an essential part of managing ICP but it presented major risks – drain insertion damaged brain tissue and its ongoing presence threatened infection.  

Forewarned is not forearmed. Early in March Carolie became febrile with ventriculitis, caused by a bacterial infection.*  

The EVD from Carolie’s first night in the labyrinth came out and a high dosage of antibiotic was commenced.  After a further CT scan revealed ongoing cerebrospinal fluid problems the surgeons inserted a new EVD, ceased the antibiotic just over a week later and warned me of the unavoidable but acceptable risk of further brain tissue damage from the procedure -  ‘acceptable’ because of the higher risks associated with uncontrolled ICP. 

To be continued....

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*           CSF cultures grew “gram negative rods (pantoea species)”

Long Night's Journey - Part two

Continues...

We now confronted some new hurdles.  Under life support protocols, after two weeks a tracheotomy replaces the mouth breathing tube to reduce the risk of infection and further damage to the throat.  An ICU consultant was the designated expert in this field.   

However, these procedures happen during week day mornings to ensure full backup in the case of mishap. It was often the time angiograms and CT scans were scheduled.  It took almost three weeks to align all the actors for a tracheotomy.  

Carolie now breathed through a tube in her lower throat, cleared regularly by a nurse using a reverse suction mechanism attached to the tube.  This was an alarming exercise as it triggered a violent coughing spasm each time.  The nurses were pleased with this response as it signalled her cough and clearing mechanisms were working. 

One down side of a tracheostomy is higher risk of pneumonia.  I signed Carolie up for a study of pneumonia incidence in tracheotomy recipients.  Several approaches came from study teams trialling new techniques and reviewing existing management protocols.  I agreed to all of them.  One of the by-products of large teaching hospitals is research to improve treatments and enhance the knowledge base.  I welcomed the opportunity to contribute, although vicariously on Carolie’s behalf.  

 New technologies, methodologies, treatments and pharmaceuticals are trialled regularly in hospitals offering a full suite of treatments; often funded by companies with a commercial interest in new developments.  Unfortunately, I did not see similar enthusiasm for holistic healing horizons, although the new ‘life house’ could be a catalyst to better integrate treatment, recovery and healing.

We remained locked in ‘treatment’ mode.  Carolie’s other responses were not encouraging.  She did not respond to basic commands.  Her reflex points were sluggish.  She succumbed to mild pneumonia, for which she received additional antibiotics. Ongoing oedema increased the risk of deep vein thrombosis.   

To detect possible clots nurses used Doppler ultrasound to locate various lower limb pulses.  Swelling disfigured her feet and legs and she shed all her skin from the calf muscle down.  Various preventative measures mitigated the worst effects, including foot elevation and a sleeve-like device to compress her legs and keep blood flowing through her veins.  Orthopaedic shoe splints manipulated feet, ankle and shin.   

Therapists and nurses occasionally performed leg lifts and gentle foot and ankle exercises.  I responded diligently to a green light to apply gentle massage to arms, lower legs and feet – I was relieved to be doing something.   

To be continued....

(VI) Long Night's Journey - Part one

A ‘strange loop’ had deposited us back where we came in - awaiting major surgery to clip a burst aneurysm.  During almost two weeks, Carolie had been operated on, had a near death experience from asystolic arrest and been put in deep coma, all the while battling oedema, high blood and intra-cranial pressure, weakened breathing and clinicians making terrifying pronouncements over her.  

 For me this was the worst case of déjà vu imaginable – a similar operating schedule; a desperate wait into the late evening for a surgeon’s call; desperate angst over my love’s bad luck.  The labyrinth was toying with us.  There was no simple exit or easy transit to rehabilitation; no celebratory news for friends and family - just a wild ride and a faint glimmer of hope for survival.

The line between fear, hope and grief blurred.  My lover, my friend, my confidante – was hanging on by a thread. Portents of terrible damage or death were writ large in various prognostications along the way.  Fear was a constant - after a while, I lost the sense of what being without fear was like.  It wells up and falls away like a restless sea. 

I fell back on coping mechanisms such as a few yoga exercises at night, chanting internally and a couple of strong drinks before sleep.  Abject despair lurked at the back of consciousness.  Grief bubbled up alongside hope - grief for the growing possibility of loss of love and friendship, shared memories, career potentialities and other future life possibilities - hope that some semblance of a life together was salvageable. 

All our plans for the future had been illusory.  In the event she survived, quality of life was uncertain, the degree of physical and cognitive damage unknown and potential for recovery unpredictable. My thoughts swirled around these painful scenarios.

Around midnight I received the news.  The new clip was in situ and doing its job; she was in post-surgical recovery.  There was no elation this time round, just a determined relief at another major hurdle jumped.   

The journey had not finished with us by a long shot – my wife remained in coma, her prognosis was unclear, the extent of brain damage was unknown; her response to treatment was uncertain; and her will to fight under intense examination.  I wrote to friends,

            Carolie has been in an induced coma for a week and a half after a series of BP & ICP problems.  She had a 2nd operation on Friday, which was successful.  The coma drug was stopped on Monday but takes a long time to leave the body. She is stable and we hope she will surface over the next few days. We have no idea how much damage has been wrought by all these events and wait with fear and trepidation.  She has some major hurdles yet. I'll let you know when I have some good news.

Defying all expert predictions, the coma dragged on interminably. A range of specialists canvassed a spectrum of possible scenarios with me, none of which eventuated.  Weeks after the Thio left her system she remained in deep coma.  Each prognostication left me grasping at straws.  No one made any sense to me on the subject of when and how and if she would awake.

To be continued...

Long Day's Journey - Part six

A mere ten days after the craniotomy ‘Mr Sensitive’ - the junior registrar from neurosurgery - arrived with more bad news.  Since the scare of the cardiac arrest, the head neurosurgeon had been scouring pictures from the angiogram series.  He noticed something that suggested the bleed had not stopped, which would explain the sudden spike in ICP five days ago.   

The clip had not done the job.  A larger clip in a slightly different position would staunch the bleed completely. The relative risks of action and inaction were clear and on we must go. Feeling desolate, I gave my permission yet again for the procedure. Carolie had to go under the knife again, two weeks after ‘successful’ surgery.  

The surgeons had ceased ‘Thio’ many days back but Carolie remained in deep coma.  As I predicted, the drug was slow to leave her system.  My hope was that she had pulled the shutters down for a deep healing sleep.  The gloom threatened to settle around us.  I could not bring myself to inform anyone, except an occasional phone call.  

 I tried to take a day off from the ICU but felt so guilty I returned during the night.  The normal diversions such as exercise, a bit of retail therapy, time spent chatting with friends had lost their allure. Days merged with nights.  I stayed longer by Carolie’s side, terrified she might slip away if I was not with her.  I imagined the worst when I was absent.  Time spent out of the hospital was harrowing so I tried to limit it to hours needed to eat and sleep. 

These were the dog days of the recovery vigil.  Worry gnawed away while I clung to hope like a life raft in dangerous waters.  The passing cavalcade of doctors, nurses and attendants became a blur.  I talked to Carolie constantly, holding her hand, massaging areas not wired up to manage her treatment, pleading with her to come back to us.   

The support monitors beeped like pinball machines and the wavy lines were outward proof of life.  Apart from regular turning to avoid pressure sores and adjustments to lower limb devices and positioning to avoid thrombosis, all else was still.   

Nurses’ routines of checking eyes with a torch, clearing the breathing tube, swabbing the face and issuing verbal commands to squeeze hands and move toes were all that broke the monotony of waiting.  

I had a strong sense of us searching for each other in a dimly lit corner of the labyrinth.

Long Day's Journey - Part five

Close quartering with intensive care operations provides uncomfortable insights. Your cloak of ‘invisibility’ enables close observation. On one occasion police appeared at the nurses’ station. My radar told me something was amiss with the latest arrival next to us. Snatches of conversation came drifting across to me.


The man in his 40s had extensive brain injuries. He had been alone and unconscious for many hours. Pronounced ‘brain dead’ on arrival, it seemed he had been the victim of some form of misadventure, warranting a coronial inquiry. Various male relatives or friends arrived during the late afternoon to hear the bad news and pay their last respects. At some point, his closest kin gave permission to turn life support off and that was that. He was gone. During the course of an afternoon, a drama played out in the streets of our largest city ended in a man’s death in the next bed.


In a lighter vein, one of the senior registrars was a ‘fang merchant’. I rarely saw her without a consumable. On arrival, she would eat and drink, heading off in the direction of in-house eateries at every opportunity. She snacked relentlessly, between wandering the unit like an authoritative behemoth, issuing instructions and declarations in all directions. This emissary of the “Red Queen” never acknowledged my existence, which was a blessed relief. I mused on a snippet of Carroll’s rhetorical nonsense that fitted the scene:


‘A slow sort of country!’ said the Queen. ‘Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that.’


We were running standing still, and not getting anywhere fast. I marvelled at the studied patience and quiescence of experienced nurses in the face of such wanton displays of hubris and self-importance. It was humbling to witness their discipline under fire, especially toward the end of a demanding shift.

The amazing nurse cohort came from all over the world. There was a ‘jordy’ from the north of England, Irish and Scots. I met an African, a Norwegian and a Canadian amongst the group. Asian nurses – from the Philippines, Thailand, India, Sri Lanka and China – were in a majority. While Nurse Managers and many of the senior ICU nurses were mostly native born there was a preponderance of registrars from Sri Lanka and India, countries where there is, ironically, a culturally based obsequiousness to status and authority.



Drives to recruit foreign nursing and medical staff on short stay visas have clearly plugged personnel gaps in areas of the labyrinth. Nevertheless, what does it say about long-term human resource planning in this essential service area? State and Federal Governments have served us poorly over decades.



A highlight of ICU days was the rousing support of family and friends. It is impossible to put too much emphasis on their role in getting me through. Large labyrinths are bewildering and hide their inner workings, but they can conjure a strange healing alchemy between people. The occasional kind native provides fleeting engagement and solace, but it is difficult to shake the sense of being an outsider in an industrial space with the warmth and charm of a dressed up dystopia. Yet, a veritable magic enlivened shared experiences with people close to me.







It was hard for visiting friends. Confronted with a comatose Carolie, swollen beyond recognition, their shock was writ large. Many poor souls do not survive their journey in the labyrinth. A lot needs to go right and close support from others is an amazing fillip for patients and family. In our case, lapsed friendships suddenly came back to life; distant friends sent healing thoughts. Visits from close family and friends helped me take stock of thoughts and emotions, which ran unchecked most of the time.






Our son visited spasmodically as he was settling into a new life as an acting student and share tenant in Sydney. He coped with the ‘coma’ phase rather well, sometimes helping to calm his anxious father. His years of working in a pharmacy had left him sanguine about the application of the hospital pharmacopoeia.


Some friends visited when I was not at the bedside and these provided a different succour; it comforted me to know someone was on vigil when I stood down for personal maintenance. They were there for her and that mattered a lot in the scheme of things. An occasional quiet lunch or dinner with family and people who knew me well was therapeutic in that I could download some of the angst and try to talk about something else for an hour or so.

A reiki practitioner focussed her healing technique from afar. My yoga class in Canberra channeled healing messages. School kids sent messages of love and healing wishes. We were going to need all their love and support.


To be continued...

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*              Lewis Carroll, Through the Looking-Glass, The Folio Society, London, 1962, p.27

Long Day's Journey - Part four

Continues...

The different cohorts you encounter shape the cultural landscape of the labyrinth.  Top of the food chain are various specialists, whether surgeons, anaesthetists, consultants or senior registrars.  My interactions with this class were spasmodic and cursory.  Obviously, they are all short of time. 

The senior neurosurgeons engaged me on occasion, usually when there was a substantial development to report or procedure to implement. They kept discussions to a minimum.  A junior registrar was the designated ‘gofer’, sent to fetch permissions, update the situation and convey bad tidings. He was prone to the declarative gestures common amongst his tribe.   

One ‘clanger’ was a rather casual observation that a previous assessment that Carolie would likely resume a normal life was now qualified and that she would never be the same again.  This came without clinical context or any ‘parenthetical amplification’ to assuage the nasty effect it had on me.  He was a regular visitor to the ICU as neurosurgeons are central players in this area. I later suggested his choice of words were insensitive at times.  He replied arrogantly that this was his way and that it was best to lay out the ‘facts’.  It was a tad depressing to think he inculcated such communication strategies as part of his training.  

I wondered whether a focus on emotional intelligence might better prepare medical specialists to deal with people meaningfully. Nurses did their best to mitigate the worst effects of the medical hierarchy’s studied disengagement.

I perceived a lack of either empathy for or genuine interest in the fate of individual patients emanating from the senior medical cohort.  Doubtless this is woven into their DNA via training and operational culture.  Obviously, there are too many damaged souls and they maintain a detached professionalism to be most effective.  I would argue that a more personalized approach is preferred, whilst retaining professional objectivity.   

Across the public sector it is a truism that the more senior staff become, the less contact they have with actual ‘people’.  Those who determine policy and the quality of service delivery become increasingly detached from the supposed beneficiaries of these same policies and services.  Clearly, the senior medical cohort do have contact with patients and family, especially when they are directly involved in their treatment.  From my personal experience, a surgeon who treated me in recent years visited me every night after my procedure and spent ‘quality’ time with me.  I wondered whether he ever saw his family.  

During our stay a member of the senior cohort wandered into the ICU occasionally to engage the shift registrars.  They were obviously clever and skilled and wore their status like a cloak of unapproachable authority.  I was reminded of a kind of aristocratic mannerism I have experienced in England – personable, chatty, but a body language resonant with detached superiority and an implied declaration – ‘do it my way or the highway’.   

It must be difficult for the senior cohort to avoid falling into absolutism in managing junior cohorts, especially if they have trained under authoritarian regimes. Someone has to be in charge and make decisions.  Yet, collegiate processes are healthy, and respect for leadership should derive from performance, knowledge and skill.  ‘Best practice’ must surely be a touchstone in a teaching hospital, and doubtless guides the work of the labyrinth, despite its evident spatial, operational and cultural limitations.

One of the senior ICU registrars made efforts in my direction.  He would put on his ‘concerned’ face and sit with me.  Whenever he finished his expositions, I would steel myself for Carolie’s imminent demise.  On occasion I was so upset by his words I sought further clarification from nurse managers.  They would explain that he was outlining broad parameters that would not necessarily apply to Carolie.  He would wander off, pleased with his handiwork.  He reminded me of a central character in the Discworld novels of Terry Pratchett.  A central character - ‘Death’ - never enjoys his work – he has a hangdog approach to the harvesting of ready souls. 

None of the registrar’s dire prognostications took place.  I recall him arguing the toss with an ICU consultant as to who should remove Carolie’s brain drain.  He was adamant it did not fall within his responsibilities and should be the domain of neurosurgeons.  One of the experienced ICU nurses later removed it in a blink.

Social workers are a discernible ‘tribe’.  When you arrive in an ICU or high dependency ward, they are quick to make their presence felt.  I was ushered into a deep and meaningful meeting with an earnest soul, and regaled with a shopping list of potential support opportunities; a veritable smorgasbord of help.  The parking pass was one of them.   

Another was a list of local accommodation with reduced tariffs for family visiting the hospital.  There were others on offer but it was little more than a check-list exercise.  I quickly discovered the pass was a cruel illusion.  The accommodation prices turned out to be wrong as Sydney hotels were cashing in on the Gay Mardi Gras by hiking all their tariffs.  To access a petrol subsidy required a process bordering on the absurd.  It would have cost more than the pitiful reimbursement.   

All of the social workers met on our path were engaging, likeable people operating in a bureaucratic maze of ticked boxes, regulations and illusory support.  They coordinate in-house meetings designed to provide information feedback, and facilitate form filling by in-house actors, and they know a thing or two about off-campus parking.  All seemed run off their feet, dashing from one meeting to the next, providing gratuitous advice, getting the check-lists and meeting minutes sorted.      

To be continued...

Long Day's Journey - Part three

Continues...

Once into the ICU area I ran another gauntlet – the receptionist.  Over weeks, most would let me in on suspicion that I was not masquerading as someone else.  That was a comfort.  Yet, one took delight in putting me through the hoops.  I suspect he was a retiree from one of our disciplined forces.  He had a determined look that suggested any expectation of sympathy was fruitless.  This was his domain and no anxiety-riven family member was getting past him without clearance from the shift nurse, no matter how many times I confirmed my relationship to a comatose patient.  

 Every so often, the word from the unit was to stay outside until doctors did their rounds or nurses attended to Carolie’s ablutions.  I would sit for hours, witnessing all manner of things done to her, but the occasional intervention was strangely out of bounds.  There was no obvious logic to these random exclusions, especially since they knew I was her next of kin and likely prime carer. 

I particularly failed to grasp why morning rounds were sometimes an exclusion zone.  For me, these mini seminars were a moment of clarity as the ranking ICU registrar or consulting specialist oversaw a coordinated update on each patient’s situation and prognosis, in the company of shift nurses, interns, residents and registrars.  

 In a teaching hospital, morning rounds provide trainee staff opportunities to demonstrate and build on their learning.  When not excluded completely, I found the dynamics and substance of these daily seminars instructive.  Although the artificial walls of bed screens would often exclude me, I could hover at the central station and overhear proceedings.

Senior registrars or consultants would turn up intermittently with students or an intern.  Inured to any effect these exercises might have on family, various scenarios and prognostications played out between mentor and trainee as if they were in a soundproof booth.  These were exclusive exercises for self-absorbed initiates. Carolie was an abstraction, an ‘interesting case’.  I heard every word and nothing brought comfort.  

I wondered at the complete lack of concern that the patient or family might be hearing these dire prognostications and losing hope.  In fact, he was asking his student to hypothesize on the basis of ‘knowns and unknowns'.  Her actual circumstances were beside the point.   

In recent years medical communities in some countries have focused on health design, environment, and patient-centered care; in recognition that subjective and amorphous qualities, including attitude, state of mind, and personal empowerment, can have an enormous impact on a patient's treatment and recovery.  I saw some evidence of this evolving regime in the practices of ICU nurses and a few medical staff, but Australia has a long way to travel if equal emphasis is to be given to inner and outer healing. 

The relative willingness of key players to enlighten, listen and respond to real concerns and fears was instructive as an indicator of progress.   The majority of nurses and an advanced trainee specialist in intensive care provided glimpses of how an integrated model might work with doctors and nurses working together closely at its hub.   

Rather than operate on the periphery - a ‘high-wire exponent’ called on only as required - the trainee was hands-on from the outset.  His explanations of Carolie’s treatments were regular, informative, detailed and constructive, avoiding the pre-determined prognostications of others we encountered.  He dealt solely with actual specificities, rather than generalized declarations, and kept me abreast of updates generated from CT scans, angiograms, X-rays, pathology tests and any associated revisions to the treatment regime.  It was refreshing, comforting and most of all, empowering, to have quality feedback and a manifestly genuine interest in our plight.  I was more relaxed when he was on shift and missed his input terribly when he moved on.

From our overall experience, Australia has a way to travel to be at the leading edge of integrated care. Courses abound and there is an emphasis on skills development, but the labyrinth only showed glimmers of interest in holistic healing approaches.   

Rather, the medical establishment seemed inclined to pull up the drawbridge and repel boarders. 

A medical culture steeped in highly structured, rigid work practices, with truncated dialogue between in-house cohorts, patients, family, carers and other stakeholders, will be slow to change.  Yet, a better paradigm might be on the horizon. Following is the mission statement of the “life house” under construction for cancer care:

The facility will integrate clinical care, research, education and integrative therapies, creating opportunities for innovative discoveries, compassionate holistic care and better outcomes for patients, their families and carers.

This could be a healing space if the promise is more than just a glossy ‘promo’.  Positive indicators from our own journey left me with hope that certain redundant practices might evolve in time. 

Thoughts of how to manage life-threatening illness come into stark relief when patients in danger surround you.  The spatial disharmony of the ICUs – the ‘fractured mosaic’ referred to earlier - was hardly ideal.   

 

I kept imagining the characteristics of an effective healing space, where teams of allied professionals and complementary therapists worked together in an integrated way, technically and spatially, with patients at the centre.  It would curtail the endless traipsing off to other areas for various procedures, physical disruptions that must inevitably disturb, and occasionally threaten, recovery processes.  Removal from and return to the controlled environment of the ICU was a constant for Carolie throughout her stay.    

The traditional hospital design of intersecting linear corridors on multiple floors is counter-intuitive to service integration and management.  The old layered box construct, typical of 19th and 20th century administrative systems, is not conducive to an enlightened approach to hospital management, as described above. Architecture informed by an integrated philosophy of healing would see a different paradigm emerge. The labyrinth would get a makeover, spatially and culturally.

 To be continued....