Blog Archive

Dear Readers, I have added an archive today to assist with navigating - enabling the blog to be easily read chronologically.  Just click on the month to access earlier posts. Thanks for your patience.

Looking Glass Wards - Part four

Continues...

We were yet to visit these realities.  My only concern at this stage was an ambulance transfer, settling Carolie back into the Canberra hospital domain and continuing on the path to an ill-defined recovery.    

On the day of the transfer, I set out early to ensure all was in readiness for her arrival. As with most aspects of the journey, departure and arrival times were unclear.  The ambulance left later than expected; with transfer speeds conservative for someone with a tracheostomy.  I rang the designated ward many times, driving the duty managers to distraction.  They had as much idea as me on expected arrival times. 

I had expected they would have radio contact with the ambulance and be able to check on schedules.  By 4pm, the ambulance had not arrived. It was another nerve-racking wait, but I was more track-hardened on this occasion and took most of the uncertainty in my stride.

Eventually, one of my regular phone calls extracted the awaited news of Carolie’s arrival.  The trip had gone without incident.  Ensconced in a single room with a large plate glass window adjacent to the nursing station, close monitoring was now possible.  The room was airy and had an unfettered view of nearby surrounds. 

The standard of accommodation met my expectation of what was necessary to keep her safe in transition from the tracheostomy.  I never felt that in Sydney, once she left the ICU.  My anxiety level diminished. I knew we were in a new grind, but fears of cross-infection and inadequate monitoring tapered off.   

The nurse to patient ratio was probably no different, but the operational culture felt more focussed and ‘sympathetic’ - reinforced quickly as I came to know a few of the nurses rostered to manage Carolie’s stay.  They were another multicultural potpourri of empathetic nurses.  Some were young and inexperienced, and did not have the aura of technical competence exuding from the Sydney ICU cohort, but they were friendly and happy to oblige my determined ‘briefing’ of each of them.

My experience in the Sydney ward had convinced me that care protocols did not necessarily transfer in tandem with patients.  I was more alert in Canberra. I discovered nurses were giving Carolie 1000mg of Paracetamol as a routine prophylactic.  In the Sydney ICU, she had a dramatic response to the common analgesic, such that it dropped her blood pressure precipitously.  An adjustment to her care regime acknowledged this atypical response - to reduce fever 500mg would suffice.  This necessary diversion from the usual approach to prophylactic care was lost in conveyance.  I had to insist on several occasions that her formal management regime reflect the smaller dosage requirement.    

Another incident was more serious.  Towards the end of her period of intensive care, Carolie developed a deep-seated bacterial infection in the area of the cranial suture line.  Blood cultures revealed at least two organisms – Staphylococcus Aureus and Klebsiella Oxytocae – were present.   

Staphylococcus Aureus 

Klebsiella Oxytocae

A neurosurgeon told me such cranial infections were common because of contact with foreign objects inserted during treatment, such as the EVD. Bone matter infections do not always respond to long-term antibiotics, requiring further surgical intervention to remove the infected tissue.  Antibiotics are the first line of defence and I did not think much more about it. In the overall scheme of things at the time, it was a lower order concern. 

A small dark tissue mass marked the discharge point at the site of the second EVD, which retained a stitch, unbeknown to ward nurses and me.  The presence of this stitch was lost in patient transfer.  It remained in situ in the Sydney ward and for many days in Canberra. 
  

After almost a week had passed in Canberra, Carolie was becoming febrile off and on.  Seepage at the discharge point alerted nurses to a possible ongoing problem.  The stitch was uncovered and removed and further culture tests ordered.  Whether the failure to remove the stitch much earlier contributed to the bacterial infection is unclear, but it cannot have helped.  The cranial infection persisted and its treatment came under the purview of infectious diseases specialists.  Long-term antibiotic treatment of this infection continued for over two years.

Speech pathologists were still to the fore, continuing the cuff deflation regime in preparation for removal of the tracheostomy.  Her left side remained unresponsive, while the right was showing limited mobility.  Reviews by a rehabilitation specialist, physiotherapist, dietician and occupational therapist mapped her recovery regime toward full-blown rehabilitation therapy.   

Carolie remained under the over-arching purview of the neurosurgical team.  I settled in for another long haul and gradually came to grips with this new staging post.  

To be continued...

Looking Glass Wards - Part three

The neurosurgeon’s grim scenarios kept ringing in my ears and I yearned for prognostic clarity.  The further we ventured the more unclear the potentialities became.  Death was a tragic but discernible and largely expected outcome in Carolie’s circumstances.   

Survival from such a traumatic sequence of medical ‘events’ was far less likely and threw up unpredictable outcomes.  More than once, medical specialists told us she should be dead.  Any scenario beyond that was against the odds and unmapped.  

I was astounded by how little is known about such brain trauma and recovery.  The studies are sparse and focussed on surprisingly limited parameters.  There is clinical research on the pathology of stroke - a common cause of death and morbidity in our society - but understanding of the ‘ecology’ of stroke survival appears in its infancy.  

As a minor category of stroke, the geography of the sub-arachnoid haemorrhage landscape is barely discernible.  All of the documentation available during the journey dealt with the generic condition of ‘stroke’. 

When I later asked a neurosurgeon about therapies to investigate and maximize brain plasticity and cognitive re-alignment his reply, unsurprisingly with hindsight, was that such concerns fall outside his discipline’s recovery parameters.  They have various categories of survivor, with most remaining within the boundaries of permanent incapacity and semi-institutionalization.   

A fortunate few return home to resume a semblance of ‘normal’ life, but the prospects for complete cognitive rehabilitation are slim.   Physical rehabilitation strategies are well developed and targeted to the specific needs of stroke survivors.  Knowledge of therapies to aid cognitive recovery from brain damage is imprecise; paths to healing largely inchoate. 

To be continued....

Looking Glass Wards - Part two

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One positive from the air of detachment that pervaded the ward was that no one seemed to care one way or the other about my ongoing interest in complementary therapies for Carolie.  Both therapists who treated her in the ICU continued their work in the ward.  She responded well to acupuncture and ongoing vibration healing.   

Cognitive signals were strengthening, and encouraging physical responses were apparent, coming as they did from such a low baseline. One of the senior nurse managers visited from the ICU.  Her ongoing interest in our welfare was instructive.  No neurosurgeon or any other medical interlocutor showed the slightest interest in us once we left their purview, but the ICU nursing corps kept touch and we continued to feel their compassion.  

 Professional disengagement is one thing - to retain objectivity and operational clarity - but when it translates to a complete lack of interest in patient outcomes, it is worrying.  I wondered whether patients are viewed as something akin to inanimate objects on a production line; to be serviced, processed and dispatched. I continue to ponder this issue.

A new treatment regime was upon us.  Speech pathologists were at the centre of this next stage in the recovery process.  The challenge was to remove the tracheostomy at the earliest opportunity without compromising her breathing and swallowing functions.  What had been a lifesaver was now an impediment to further recovery. Periods for deflation of the internal sealing cuff increased over several days to encourage Carolie to breathe for herself – a process monitored closely to clear airways and check vital signs.   

She made good progress.  The way was clear to return to Canberra with the tracheostomy still in situ.  

I was both relieved and a little anxious.  I wanted her off this ward as soon as possible.  There was something in the general tone of the place that troubled me.  I had become used to the esprit de corps of the nursing cohort in the ICU.  Their attention to detail and focussed energies was an ongoing source of comfort.  Ironically, having Carolie at less risk had not approximated to less worry.   

If anything, I was more anxious for her in this ward, surrounded by discordant noise and static.  She remained extremely vulnerable to infection, was immobile and her cognitive status was uncertain.  Despite the inherent risks, I had no hesitation in agreeing to a transfer at the first opportunity. I would not miss this corner of the labyrinth.

An overhead lifting hoist with harness was a new component in the daily treatment regime.  The contraption operated from fixed rail runners and enabled nurses to move patients into chairs for ablutions and other procedures.   

The speech pathologists preferred her sitting up for the airway cuff deflation, which revealed a serious negative consequence of the aneurysm.  Carolie had discernible physical disability.  Her head fell away to the left and her physical deportment indicated palsy had weakened severely her left side.  This made finding a comfortable and safe position for cuff deflation more challenging. 

Transfers to chair were simpler because of the harness, but she required close supervision because of a tendency to collapse to the left.  When this occurred, pressure pushed the tracheostomy tube to an awkward angle, potentially restricting airway clearance.  Her gurgling sounds were alarming and I frequently called for a nurse to clear the tubes.   

It was harrowing at times because the duty nurse would be busy attending to other patients.  Anxiety would rise until I would have to go looking for someone.  Doubtless I need not have been so fearful, but not having a sense of the relative risks associated with fluid in the airway left me on edge most of the time.  Muscle wasting further compromised maintenance of her chair posture, which triggered fits of gurgling that sounded like she was drowning in her own fluids.  The portents for a long and difficult physical and cognitive rehabilitation were obvious. 

To be continued...

(VII) Looking Glass Wards - Part one

High dependency neurological wards were the conduit for the next stage of the journey.  Four days after Carolie opened her eyes in the ICU, we found ourselves cruising through the bowels of the basement to a lift skywards up nine floors.  An ICU nurse accompanied the attendant on the ride to this new port in the storm, to assist set up breathing arrangements, and to hand over the status report.  I was anticipating a fresh, airy space with one bed and windows everywhere.  

We arrived at a ward leading off a long, dim corridor, some distance from the nurses’ station, and in the company of three other damaged souls.  A toilet blocked the view out of the window, which was a pity as it was a panorama of the hospital and adjacent university precinct.  My heightened anticipation deflated; I pondered the sudden downgrade in circumstances.

I had understood certain protocols surrounded tracheostomy care.  This involved close proximity to the nurses’ station, preferably in isolation to reduce the chances of infection.  It was clearly not the case.  I knew the one to one arrangement in the ICU would not continue, but I had not anticipated that one nurse would tend four seriously ill patients.   

One of these was suffering delusions and acute pain.  She cried out alarmingly as she fought against strapping preventing her from removing head dressings and getting out of bed.  Her distress was certainly real, with her wounds appearing more than physical, and with little relief on offer.  I suspected she was heading for an ICU bed to receive the intense care she patently needed. 

The neighbouring patient was the inveterate smoker from an earlier chapter. He was recovering from the same problem as Carolie.  His young partner and baby had accompanied him from a rural town and spent most of the day with him on the ward or on his smoking ventures outside.  His TV was on constantly and the baby cried a lot.  The other patient was an older man who kept quiet until visitors sparked him up.  He was from an isolated grazing property; looking forward to getting back to his rural idyll.

The ward was old stock.  I had seen better hospital bathrooms in developing countries.  The ancillary equipment such as supportive chairs were worn and tired.  The troubled woman cried out at the demons plaguing her; a surreal sense of entrapment in a secure facility nagged me.   

Blaring TVs, crying baby, patients beset by various neurological conditions, reduced nurse monitoring, and a detached nurses’ station that had all the warmth and engagement of an information desk in a busy shopping mall.  This was the domain of neurosurgeons.  I recognized members of the team that had managed Carolie’s treatment.  Their studied detachment appeared to suffuse their operational domain; nursing staff had adapted to the management culture. 

Young nurses hurried about between rooms and those at the station seemed preoccupied with whatever was in front of them.  The esprit de corps manifest in the ICU nursing cohort had vanished.  The warmth and engagement that had provided me so much succour during the ICU vigil was in short supply.  The harsh reality of under-resourcing was writ large on the ward operation.   

The quality and quantity of nursing care fell away quite sharply.  I have no doubt these nurses had as much care and concern as their ICU cohorts but their operating culture was clearly different;  more detached, less resourced and clearly subject to the structures of the medical and nursing hierarchy.  This was old-style nursing; know your place in the pecking order, do your job and do not rock the boat.

To be continued...

Long Night's Journey - Part six

Continues...

I discovered the therapists had succeeded with brain trauma victims previously and welcomed the challenge of working with someone coming out of coma.  They preferred to work as a team initially to intensify the remedial benefits.  We scheduled the first session for late morning.  I met the couple outside the ICU and we proceeded to Carolie’s bedside.   

The prospect of a hands-on healing intervention filled me with anticipation.  Little could I know what a profound thing would occur.  The couple began at either end of her body, using their hands to ‘feel’ vibrations and determine the extent and nature of damage wrought by haemorrhage and remedial procedures. Their respective ‘read’ of the body was illuminating.  They moved their hands to key points and appeared to tap into her vital energies. 

After a period of gentle application of the hands to the head the samvahan therapist said, “This is not a brain in coma; it has been tired for a long time and has suffered some distress in recent years - now it is sleeping”.  My mind immediately cast back over many years of overwork and poor workplace support. It had taken a massive toll on Carolie.  I had worried about her body rebelling and frequently nagged her to have more down time.  While not a direct cause of the aneurysm, her weakened metabolism and reduced energy levels were a backdrop to her slow recovery from surgery and induced coma. 

The couple continued to work systematically on pressure points and other sympathetic tuning areas of the body.  Suddenly Carolie’s eyes opened fully.  Two big blue eyes were looking at us.  The couple introduced themselves again, this time to an awakened consciousness.   

What manner of alchemy was this?  An overwhelming relief flooded over me.  I had been trying to communicate through the subtle vibrations of familiar music - playing her Vivaldi, Rachmaninoff, Satie and the sublime sounds of Shivkumar Sharma’s santoor through an iPod – but these skilled practitioners had reached her via her own vibrations.  For me, it ranked alongside the great ‘awakenings’ from the annals of induced coma. 

Over the following days, Carolie was able to sit for a period.  She awoke for increasing periods, engaging eyes and squeezing hands.  The samvahan practitioner had another session with her two days later.  This time she was awake throughout, and appearing to respond to his touch.  His ‘read’ of her body picked up little overall damage in areas such as speech and long-term memory.  My relief was visceral.  I found the following a comfort:

Our bodies were designed to work with flexibility and ease, but sometimes bad posture, intense stress and a hectic lifestyle can trigger a series of painful reactions ranging from muscle strains, stomach cramps and migraine, to ankle injuries, wrist injuries and back pain.  These types of ailments, as well as imbalances created by major illnesses, can be treated through Samvahan.  All people are unique in how they create and hold vibrations.  Each organ, tissue and cell in our bodies is like an instrument in an orchestra.  Just as there are different frequencies, overtones and peculiarities unique to each instrument, the same applies to the body.  Every instrument has to be tuned for optimal performance and to suit the entire orchestra’s harmony.  The therapist works as instrument technician and music conductor to help the client…create the best possible balance, vibrancy and long-term vitality.*

The nurses appeared equally impressed by the sudden improvements.  Her blood and IC pressures settled.  The second EVD became redundant; they started to talk about moving her to the ‘ward’ and thence back to Canberra. We had daily visits from speech pathologists, who take a pivotal role in preparations to remove a tracheostomy. They manipulate an external balloon mechanism to inflate and deflate the internal cuff that seals the airway, and monitor the prevailing pressures carefully.

A strict trialling protocol ensures the patient is not under too much duress.  The pathologist deflated the cuff for increasing periods to test her capacity to breathe unaided. A meticulous process, it seemed like marking time.  

 I was impatient to know whether her speech was impaired and to hear her talk for the first time in over a month.  A whistling throatiness would signal a build up of fluid in the airway, cleared by the usual oxygen suction. The gurgle was alarming at times and I would anxiously alert the nurse if she went away from the bed. This process commenced in the ICU, and continued for some time in the high dependency neurology wards of both hospitals.  Carolie would go back to Canberra with her tracheostomy still in place.

Another noticeable change was the nurses’ keenness for Carolie to be out of bed.  On one occasion, two joined me on an excursion to a private area of the old hospital.  A convoluted path took us down corridors and through doors to an old area under new development. A tiled fountain lay unused at the centre of an elegant heritage garden courtyard; a one time residential hall for staff was my guess.  

 It felt like we had emerged through a wormhole to an earlier time. I half expected nurses to appear suddenly with winged starched hats and buttoned down uniforms; generations of giggling girls whipped into shape by formidable nursing sisters.  The current day nurses could not shed any light.  Unfortunately, the chaotic cacophony of a nearby building zone intruded on this genteel time warp, but it was a blessed relief to have her out of the building and enjoying the light of day.

We had turned a huge corner of the labyrinth.  Nurse Managers prepared me for moving Carolie to the ‘ward’.  We were awaiting a bed near the nurses’ station, as a patient with a tracheostomy remains at high risk of airway complications and infection.   

Close monitoring is required, preferably in a single room. I was full of anticipation that this was a good thing; a bridge back to Canberra.  This was a light before us, dimly at the end of a long corridor.

  

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*              http://www.samvahan.com/articles-body.htm

Long Night's Journey - Part five

Continues...

Healing is a complex and subtle process.  Carers need appropriate support if they are to play their role effectively.  Informed and shared decision-making is vital.  Empathy from treating specialists can assist greatly, and their acknowledgment of the potential role of complementary healing practices is a real bonus.   

Growing worry over Carolie’s condition spurred me to act on an idea that had been germinating for weeks.  From experience in India I was aware of the amazing healing abilities of certain people.  My involvement with yoga had brought me in contact with such phenomena in India and Australia.  Healers of various descriptions had long been on my radar, but until now, my experience was limited to acupuncture, acupressure and therapeutic massage.  I reached out to several people in contact with the healing community, as follows:

          I am thinking that Carolie needs a healer with healing hands.  The doctors don't know why she is  not waking up and I think someone with healing intuition might be able to help. 

I quickly had feedback that was encouraging.  A therapist with what seemed to be the least intrusive method for someone in coma came highly recommended and lived in Sydney.  He and his wife are skilled therapists in samvahan and acupuncture.   

Samvahan is a method of balancing the natural healing rhythms of the body, practiced in ancient India.  In the 1930’s,  a young Indian chiropractor with European education, Dr. Ram Bhosle, was inspired to begin using vibrations from his hands to heal his patients. He read ancient texts about vibrational healing, and eventually spent six years in the Himalayas studying with yoga masters to perfect the method. 

His successes led him to become the personal healer for Mahatma Gandhi, Prime Minister Jawaharlal Nehru and leaders from around the world.  (See http://www.samvahan.com/founder-body.html).  I discovered the recommended therapist had studied under Dr Bhosle in India, and was a leading practitioner of samvahan.  His wife had studied acupuncture and acupressure in China. 

An abiding worry was resistance from the medical hierarchy.  I was pleasantly surprised to discover senior decision makers did not discourage my efforts.  As one nurse manager put it to me, “We need all the help we can get”.  The Head of neurosurgery and ICU senior staff did not prevent complementary therapies, provided they were non-invasive in the skull area and did not compromise care protocols.   Again, this was an inkling of how a genuinely integrated treatment and recovery space might function. 

Unfortunately, any positive feelings toward the senior neurosurgeon evaporated when he came by to update Carolie’s prognosis.  He said he had heard of my exchange with the junior ICU registrar and that it was difficult to anticipate the extent of damage. Their early optimism had given way to pessimism.  The worst case was she might not be able to return home.  Alternatively, she may wake up in two months and be fine, but he said, “I would not bet my house on it”.   

It felt like a ‘get back in your place’ moment from someone who was not going to lose any sleep over her ultimate fate.  There is nothing like a good betting analogy to put life and death matters in context.  I detest our ubiquitous gambling culture and found his throwaway line unsettling.  This was my last exchange with any of the Sydney-based neurosurgeons.  There was no further follow-up.  His final glib words rained down like heavy hail.  I was again suffused with hopelessness. 

To leave next of kin with so little solace and clarity is hardly indicative of an enlightened approach to recovery.  Their 'high-tech'  job was over; how Carolie fared beyond this point no longer their business.  It fitted the general picture I had formed of detached technical silos through which patients pass on their journey to recovery or continuing morbidity.  My hope now lay with ‘hands-on’ healers and a recovery path focussed on an individual’s outcomes.

To be continued...

Long Night's Journey - Part four

Continues...

A further CT scan would check the effects of the new drain.  On the day of this scan, I left the ICU early as I could not accompany her on these escapades.  I rang around 6pm to get the results.   

A junior ICU registrar took it upon himself to display his expertise in reading scan pictures.  His opening gambit was “the scan revealed major infarction of the frontal lobe from the original bleed”.  He next pointed out that between 20-40% of this part of the brain was “dead” – this is the area responsible for personality and decision-making.   

I was devastated on two fronts:  First, by the perfunctory prognosis of severe brain damage that contradicted previous advice from neurosurgeons; second, the fact that this ‘epic’ assessment came from a junior member of the hierarchy who was not a neurological specialist. I was alone in my friend’s apartment.  The shock could have sent someone with a weaker heart over the edge. 

My response was livid anger.  Somehow, I reached the hospital without killing anyone.  I confronted the registrar immediately; we removed ourselves some way down an unoccupied corridor for a ‘chat’.  This was the first of two occasions I lost my cool during the journey.   

I proceeded to give the young man a verbal scalding.  He started bravely with a defensive posture but gave way under my barrage, quickly resorting to plaintive apologies as the air surrounding his ears began to arc with white light.   

It took me over an hour to calm down, at which time one of the nurse managers wandered over to say the registrar had no right to say what he did over the phone and that my response was fully justified.  ‘Poor people skills’ were writ large yet again on this damaging exchange.  My patience with ‘plain talking’ specialists was running thin.

I sought clarification of the obtuse prognosis of the registrar.  ‘Mr Sensitive’ was on duty and came by to offer that clarity.  My anger rising again, I told him to go away in so many words as his ‘soothing’ manner was the last thing I needed.  Eventually, one of the senior neurosurgeons with a semblance of a decent bedside manner approached me.   

He explained the damage seen by the registrar was not from the initial bleeding and that the percentages he quoted were ambiguous at best.  Additional damage was due to the insertion of a new drain, which was inevitable as the tube engages sensitive tissue.   

As a prop, he showed me her CT scan series (not unlike these below) on his smart phone – the amazing plasticity of the brain was apparent as the recent pictures bore little resemblance to the older.

His technical interpretation of the pictures was beyond me.  I took his word that swollen brain ventricles – a combination of ventriculitis and hydrocephalus - were likely behind her not waking from coma. She was between a ‘rock and a hard place’ and I was despairing of it all.

The next step was the insertion of a ventriculoperitoneal shunt to control the draining of cerebrospinal fluid from the ventricles in the brain.  Carolie’s intracranial pressures had not responded to treatment, suggesting the life-threatening hydrocephalus condition would persist without this intervention.  

 A permanent shunt was the only solution.   

Apparently, “shunts can come in a variety of forms but all of them consist of a pump or drain connected to a long catheter, the end of which is usually placed in the peritoneal cavity” (Wikipedia).  My permission given, this last surgical procedure took place without a hitch, just over a month since the initial haemorrhage.  

 

A neurosurgeon proudly showed me the shunt, which is a miniaturized engineering marvel, calibrated by an external magnetic device.  Carolie would have a small horseshoe like indentation just backward of her right ear for the rest of life.  I learnt that children sometimes have these inserted for life. 

 The ongoing major risks are infections to the brain such as meningitis, which could seriously compromise shunt operation.  It had never occurred to me that a person might require a mechanical ventricle drain for life.  After the procedure, Carolie was still not showing any inclination to wake up.  

To be continued...