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All Brains

I love this picture of brain from the National Geographic.

Read this piece on brain by them Brain, Brain Information, Facts, News, Photos -- National Geographic.  Lovely interactive pictures.  

While looking at the pictures, remember that it is our father's left fronto-parieto-temporal lobe which is affected.  So was his ganglio-capsular region, but this cannot be seen in the picture.

Excerpt from the piece -


"Making sense of the brain's mind-boggling complexity isn't easy. What we do know is that it's the organ that makes us human, giving people the capacity for art, language, moral judgments, and rational thought. It's also responsible for each individual's personality, memories, movements, and how we sense the world.


All this comes from a jellylike mass of fat and protein weighing about 3 pounds (1.4 kilograms). It is, nevertheless, one of the body's biggest organs, consisting of some 100 billion nerve cells that not only put together thoughts and h…

SHIVERS

It was five days to go for Deepavali, our biggest festival.   It was the usual busy day, went to the Siddha hospital for a treatment in the morning, followed by physiotherapy, then some cleaning and we were resting for a bit around 4:30 PM when our nurse practically burst into our room saying something seems amiss with our father. 
He was shivering like he was out in the snow with summer clothes on and had goose bumps all over.   The temperature reading showed nothing alarming.   I had seen him like this once before in the hospital when he developed sudden shivers and our surgeon mentioned it was a sign of urinary infection.    I was sure it was matter of time before his temperature shoot up.  It did, in the next 30 minutes.   The reading was 104 degrees. This wasn’t neither unexpected nor were we unprepared.  Since we knew the bacterium Klebsiella Pneumoniae was happily residing in his urinary tract in large numbers, and as it was asymptomatic we were almost waiting for the temperatur…

BACTERIA : KILLER OF SPIRIT AT HOME

All of September and most of October we might as well celebrate as bacteria month.   Usually the first sign of infection is a spike in temperature, and lassitude of body and mind.   That was how the month of September started.   We did the usual tests – a complete blood count and urine culture test.   Yes, he had Urinary Tract Infection (UTI), yay, and the bacterium was E coli.   We start him on a mild antibiotic and wait for the infection to disappear.  It doesn’t.  The urine culture report shows that bacterium has become resistant to more drugs, so we are advised to start on another antibiotic.   That course finishes.  Repeat the culture test.  E Coli is out and enter Klebsiella Pneumoniae.  This bacterium is resistant to even more drugs.  So another dose of antibiotics.  Course completed and repeat the culture test.   Klebsella still swarming in alarming numbers with increased resistance to more drugs.  In fact it was sensitive to only two drugs.   Our doctor does not want to start…

SPANDANA

Visiting Bangalore this weekend made me stop at the office of the Spandana Public Trust.   This is the organization that has provided us with two amazing live-in nurses since we got our father home.    Having spoken to them only over phone, thought best to put faces to the empathetic voices answering our calls. 
Ms. Sunanda and Ms. Rathna, who always field the calls, were at the office on the crisp and sunny morning when I walked in to Spandana.   The office is a flat in an apartment building located at a quiet and affluent neighborhood of Koramangala.  There were some nurses waiting in the outer office looking for work.  Walls in the waiting area were filled with motivational posters.  Got couple of ideas on what it takes to be successful.  There were Spandana trained nurses sitting in another room waiting to be placed.  In a smaller room past all these room, both the ladies sat with a mobile and a landline each that rang incessantly.
Having dealt with plethora of nursing agencies we…

Happy Anniversary

It was September 10, 2010 when our father had the brain hemorrhage in his sleep.    It was Ganesh Chaturti – this festival marks the onset of Hindu festival season which ends in January with Pongal.     A day of celebration since it was also Eid and Jain Samvatsari.  Also it was my parents wedding anniversary.   Seems like a good day to have the hemorrhage.
This year September 10th was low key.   None of the festivals fell on the day.  It was just the wedding anniversary.   Routine day – night nurse getting engaged, looking for replacement; maid on long leave of absence, looking for replacement; washing lady quit, looking for replacement.  Urinary Tract Infection (again), antibiotics course started.   All of us sleep deprived and running around.  But we are all together and highly grateful for everything we have.  Happy anniversary indeed.

One of the Many Alternate Medicines

In July my sister and I went to an expo on Siddha Medicine at the Government Siddha Medical College, which is some 10 minutes away from our house.  This huge government teaching hospital has an array of alternate medicine – Siddha, Ayurveda, Unnni, Homeopathy and Magnet Therepy.   Although this seemed like a treasure trove of resource, we had little clue where to start.  Not knowing anyone who practiced at the hospital, or anyone who knew someone practicing there, we never approached the hospital.  Always looked at it from outside and strategized on how to use it. 
This expo turned out to be a good opportunity.   The number of medicine not just for illness, but for a healthy lifestyle is tremendous.  

I think we got a breakthrough for one of the treatments at the hospital.  It has been a month since we started it.  The results have been promising thus far.  Will write more when there is something definite. 




Dismayed to Dismissive - Naso Gastric Tube Changing

If I remember correctly, it was in the first couple of months after our father got discharged from the hospital that he yanked out the ryles tube in the middle of the night.   Our stay-at-home nurse wasn’t trained enough to insert a new one.  I called some nurses from the hospital.  No answer.  Since both my sister and mother were as ignorant as I was, thought best to leave them sleeping.  
Having made lot of friends amongst patients’ families, called one such patient’s wife.   The only one I knew who would be awake at 2:00am. She assured me the procedure was easy, that she has done it herself and gave me instructions on how to do it.   Well, before I spoke to her, to my father’s great discomfort, I had just tried inserting it couple of times, not confident of the position, removed it.   After I spoke to her, inserted the ryles tube once again and sat looking at him all night hoping he wasn’t in any pain.   In the morning I felt as if I had performed a surgery.
All this was almost six…

TODAY

Its been a rather quiet day.  Only one session of physiotherapy.   No Acutouch since its Sunday. He slept most of the day as the night brought him little sleep.   We - my sister, the nurse and myself watched a movie in the afternoon.   
I write this sitting next to my father who is arranging alphabets while Beethoven’s Eroica (which my sister thinks is too dramatic for this activity) plays in the background.   Watching him arrange is an emotional roller coaster.  When he picks up the right alphabet we get euphoric and when he persistently fumbles we’re almost close to being despondent.   As I look at him,  he has ABCDEFGM, don’t know why he always gets M and N placed in all sorts of combinations.  Am not too worried since this is not the first time and we ain’t going to stop until he perfects it. The persistent worry we have about his recovery seems to abate as we see small and sweet changes in him.  Like right now, he finished the alphabets arrangement (Yes, he figured out the M and th…

Cognitive Rehabilitation – Graduated from a Simple Game

Unlike the zig zaw or matching the shapes game, we picked up this rather simple game not to get disappointed even if our father does not get the first two correctly.  He got the sizes correctly alright, just not always on the first try.  When he got the wrong size in, he would realize it and fix it soon.   I guess we have been playing this for a week now.  This video is the final time he played it, apparently he now gets it all correct in the first try – yahooo!


Acutouch? Come Again…You mean Acupuncture?

In the first month after we got our father home, we were persistently looking for alternate treatments to help heal him.One possibility that seemed to work, atleast in some ways was Acupuncture.Literature available on it is a galore, so are the practicing acupuncturists.Everyone and anyone apparently is an Acupuncturist.The most reliable seems to be doctors trained in western medicine who are also trained in Acupuncture from China.We found one such very reputed doctor in Chennai.His clinic was far and highly wheel chair inaccessible.The thought of taking our father everyday to that clinic seemed like a mini nightmare.
While still on a hunt for a good Acupuncturist, serendipitously we were told of an ‘Acutouch’ doctor who was in the same area in Chennai as us.Never to let any opportunity to slip by, we paid a visit to the Doctors home clinic.The house located on a rather quiet street was an easy find since it had patients swarming outside the house.
Our Acutouch Doctor is Dr. Krishna…

Cognitive Rehabilitation – One Step Forward

We seemed to have had some progress in the 10 months since the hemorrhage, but nothing significant to change our father’s everyday comfort.  At our wits end on the next steps in rehabilitation, my sister contacted one Dr. Vishalakshi Raman who specializes in Cognitive Rehabilitation.   The Doctor suggested we pick couple of puzzles and games, match it with music and repeat the games everyday – at the same time, with the same music.   The right brain which is receptive to music apparently would get activated and would learn to associate that music with that particular puzzle or game.   This stimulation is likely to help the right brain learn some of the activities of the left brain. 
So we picked up some games last evening.  The first one we tried was placing the shapes in its appropriate spaces.  My sister and I watched him with breathless expectation. 

All the achievements throughout our father’s life did not match the triumph we experienced when he placed the first shape in its right …

Physiotherapy

Intense and consistent physiotherapy is a huge part of stroke rehabilitation.So we look out for physiotherapists to come home twice a day. Finding a good nurse, yes, we thought that would be some challenge.But finding a good physiotherapist, didn’t know efficient ones were rare finds.
In span of week we changed almost 10 physiotherapists.One of the biggest issues turned out to be our father’s weight.He was a big boy, weighing almost 80 kgs and with a height of 5 feet and 9 inches.They just could not lift him.It would take the physiotherapist, our nurse, our driver and one of us (my sister or myself) to make him stand. However it all came down to our driver.The physiotherapist would give directions and our poor driver would hoist our father.So our main criteria - a physiotherapist who would not make our dear driver slave away.Apparently that was too much to ask for. Well, apart from this there were host of tiny issues – most physiotherapists didn’t know how it make it participatory, the…

Question and Answer

It has been 10 months and 5 days since the hemorrhage.   We have come a long way but time has stood still.  Questions on his progress and our responses to them surprisingly haven’t changed.  Scary.
Q : A well meaning person – How is your father? A:  Me- Oh good
Q : A well meaning person – Does he recognize people? A:  Me – Yes, he always could.
Q : A well meaning person – Is he talking? A:  Me – no, he still has the tracheostomy tube.
Q : A well meaning person -  um! But he is eating orally yes? A:  Me – No.
Silence
Q : A well meaning person -  Can he walk? A:  Me – No.
Q : A well meaning person – Does he sit up on his own? A:  Me – No.
Q : A well meaning person – Does he leave the bed? A:  Me – No.
It has been 10 months. Question / Answers - funny.  Really situation – sometimes scary.

Lady with a Lamp

While discharging our father from the hospital almost 4 months back, we had some sleepless nights and endless discussions on finding good home nursing.   After much looking around and talking we found two male nurses, one for the day and one for the night.  The night before the discharge, both bailed on us.  The reason – our father was not ready for home care.  Apparently the nurses differed from our neurosurgeon on the timing of discharge.
We managed to have a lady come in on the first night at home.  She was slightly disoriented and was tired most of the night.  I sat vigilant watching her more than watching my father, and was constantly guiding her on what to do.  Decided to call it a night with her, the thought of monitoring her each night was unbearable.  Like a breath of fresh air an experienced nurse showed up in the morning.   She fixed everything – arranged the chaotic room, drew up a chart for medicines and feed, and took care of our father single handedly.  We pinched ourse…

Inspiration

When a dear friend first sent the TED talks link for Jill Bolte, I was fascinated to say the least.  The biggest preoccupation next to my job and my relationship was my experiments with meditation.   Was ever hungry for information on spirituality, read voraciously, watched videos obsessively and ofcouse discussed passionately.   But predictably, practiced meditation poorly.   This video by Dr. Bolte has remained one of my favorites.



Coming back to it after our father’s hemorrhage has been like watching it for the first time.   Don’t know exactly how, but I plan to implement what I learnt from this on my father.

A Supreme Court decision close home

Being argumentative and opinionated (like most Indians), I would not let a major political, economical or social development go by without discussing the issue at an enervating length with likeminded friends.
On Monday this week, the Supreme Court of India in its landmark decision ruled against mercy-killing for Aruna Shanbaug, who suffered a massive brain damage due to a violent sexual assault almost 37 years ago.The activist journalist who visited her in the hospital felt Ms. Shanbaug was ‘brain dead’, and petitioned for ending her life.The hospital staff of KEM (King Edward Memorial Hospital), Mumbai who have nursed her for all these years however think her as not vegetative and brain dead.Ms. Shanbaug is said to respond to touch, food, and music.
The time frame and magnitude of our father’s condition and that of the others we have seen and heard about in the hospital doesn’t come anywhere close for comparison with Ms. Shanbaug’s situation. I do however know that even a small tremo…

What After Surgery….?

Western medicine is amazing at saving lives.   It saves at any cost.  The quality of life it saves might not match the efficiency of saving it.   There are oh so many equipments to keep a life going, medicines galore to ward of any possible illness.  The question of how the life lives after subjecting itself to the medicines and life support machines does not find an easy answer.
If our father’s hematoma was of lesser size, he might not have needed craniotomy.   We are told that smaller hemorrhages get absorbed.  As big as our bleed was, a surgery saved our father’s life, now we are trying to heal him.
Heal him is easier said than done.  A heavy dose of antibiotic will be prescribed for any hint of infection.  If he is coughing, then a chest x-ray is an obvious next step.  Is his chest is clear in the x-ray, but he is still coughing, then it must be the brain – a CT Scan of course would give the answer.  If the scan shows nothing, then we all are stumped.   
There is very little ob…

ICU Days 2

If I remember correctly, it was around the end of second week that one of the male ICU technicians informed us that our father opened his eyes.My sister and I were ecstatic.Having watched way too many Indian movies where eye opening by a critical patient only means that he would walk and talk in matter of days, we could phantom no different scenario for us.
It was involuntary movement (the eye opening), when they changed his position in bed or made him sit on a chair.We were of course delirious and distributed samosas to the ICU security personnal. Why them? I don’t know, we didn’t know anyone else at the hospital and we were happy.
Visiting hours were one hour during the day and one hour in the evening.My sister would incessantly call him to open his eyes and I would try to block all the noise out and pry.We surely were a spectacle during the visiting hours.
He eventually heard her and opened his eyes, although with some physical help like shaking him or slightly lifting his eye …

ICU Days 1

Our ICU days lasted for about three and half weeks.During the first week, we grossly underestimated duration of recovery for neuro patients like our father.The timeline we had in mind was something like, he would open his eyes and talk to us in couple of weeks.With that he might guide us on the next steps and we would be on our way home gunning towards complete recovery maybe in two to three months.
Gradually it sunk in that our father was literally fighting for his life in the ICU for the first two weeks.Due to the severe aspiration in his lungs, they were badly affected and pretty weak.There was also midline shift his brain to right by 0.8 cm.
His haemorrhage was in the left fronto temporal region of the brain and there was well defined wedge shaped hypodense area in his left occipital parietal region. Ill defined, but there was also hypodense area with airpockets in his left periventricular region.
All this meant he was not on our prognosis path.

Bleeding Brain

Our father was found on the morning to Ganesh Chaturti , an important Hindu festival, lying facedown on the floor.  My grandma surprised why he was on the floor and not sleeping on his bed, tried waking him up to realize that he had vomited.  
When rushed to a neighborhood hospital, they found his pulse very low, black blood coming out of his nose, and the CT-Scan showed a massive hemorrhage.   He was immediately rushed to a specialty hospital and surgery was performed by one the leading Neuro Surgeons in the city.  
Since the bleed was massive, we except that he was atleast bleeding for over four to five hours during the night.  The vomit had aspirated into his lungs causing a major infection, a big source of worry even post operation.


We learnt that the bleed in our father’s brain was an intra cerebral hemorrhage in the basal ganglia region due to hyper tension (which apparently is a main cause of a basal ganglia bleed).   Yes, he was a hypertension patient for many years and was on me…

HAPPY PONGAL

Four months and three days since the incident we are still at Apollo Speciality Hospital, Chennai. Its ‘Pongal’, biggest Tamil festival, and all of us are here with our father.Surprisingly the hospital is not buzzing with the usual frenzy of activity.Emergency ward is relaxed, the ICU seems empty and there are very few families at the waiting area.
Its evening and the small shrine at the hospital, usually buzzling with people with frantic prayers is empty.Yes, empty.I have barely seen it so quiet in all my days at the hospital.My sister pushes our father in his wheel chair close to the idol.Our male nurse stands next to our father in case there is an emergency.The priest approaches us and applies the sacred ash on my father’s forehead.
My sister and I finish our quick prayers and stand next to him.Its dark and still with very few people outside.We don’t talk, don’t feel the enormity of the situation, there is no despair.We enjoy the stillness outside, feel the peace and hope within …

Last Day in DC & Phone Call

It was a typical day in Washington DC.   It was a Friday, September 10th, I had zillion meetings and deadlines.   Had plans in the evening to catch a movie at the Freer Gallery with Priya – a good acquaintance with great potential to become a good friend. 
In the morning I call my father to wish him on his wedding anniversary.  He is in India and its late in the night.   He sounds preoccupied and tired, I was rushing for a meeting.  I tell him I will call during the weekend and mentally make a note to call him and my mother, who was visiting her parents.

The day goes by at the speed of lighting.  The deadlines still await my attention.  Decide to work during the weekend.  Rush to the movie in anticipation of leaving the day behind.   The French movie was terribly French and did little to appeal to my Indian sensibilities.   Priya and I connect very well, we decide to meet the next day to continue our rather interesting conversation.
I get home and am all ready to hit the bed and Renu, …