When the going gets tougher and tougher and …

One by one, Jitish’s provisional aides bid their congratulatory goodbyes. Almost a year after the Trach and Peg tube were removed, it was time for the IVC filter to bid adieu.

The removal of the Trach and Peg tubes were a long drawn, painful process. But at the time, Jitish was barely aware of his own state or surroundings. This time, Jitish was far more aware and expressive of his needs. But, The removal procedure went as smoothly as we had hoped for. Jitish was out of surgery in about an hour and was ready for visitors. He was heavily sedated and catching some forty winks in the Recovery room. Prior to the procedure, I had expressed my wish to take the IVC filter home with us, so that a few years later I could show it to him. A small little umbrella like filter that sits in the vein could be his Battle Memento. But it was already vouched for as Medical waste. So I settled for pictures. When the nurse walked in and opened a small bottle, we expected to find a near invisible little filter.

Nope. This thing shocked us!

IMG_1978

This fabric-less umbrella was a couple of inches long and wide! And it sat inside the vein, the Inferior Vena Cava.  The IVC is a large vein that carries deoxygenated blood from the lower and middle body into the right atrium of the heart. This vein is large. Large enough to house this 2 – 3 inch filter inside. The legs of the filter are sharp as needles, clinging to the walls of the vein and staying there to serve their higher purpose.

We contained our shocked expressions to avoid waking Jitish up.

Jitish has, over the last few weeks, started to gain more awareness. The Brain prioritizes recovery, what should come first and what later. No one knows how this works. Someday, hopefully, someone will. For now, only conjectures exist. Jitish currently would be at Ranchos Los Amigos Level 7: Awareness is automatic and appropriate, but judgement remains impaired;  Almost ready to step into Level 8 with increased awareness of his current condition, and reality and logic setting in. Hopefully, he steers clear of depression and suicidal tendencies. Pray.

Jitish has started to discover issues with his body and brain. He doesn’t quite understand what and how. We are aware that there might be vision issues, especially with his right eye, considering that his left brain withstood severe damage. While we want him to keep gaining awareness and make improvements, these improvements come with a lot of confusion and lash outs. At the hospital, he had another. Even under heavy sedation, surprisingly, he was lucid enough to continue his demands to surgically remove his eye and fix a problem he has begun to discover. In his head, it was a conducive environment for surgery. We were at the hospital with doctors and surgeons around. In a bizarre way, to him we were in the right place, at the right time.

Don’t we all yearn for a quick fix to a problem? I do. I still do. I just want to wake up to a day when everything is just okay. But I know it’s wishful thinking. Fantasy. Jitish wishes the same. But he often confuses fantasy with reality. With him, emotions and decisions are extremely volatile and highly dramatic. If you agree with him, he would want to see it through, for us to make it happen. Certainly not an option. And if we try to open his eyes to the new reality, he flies into a violent frenzy making it very challenging for him and for us to calm him down.

When he  started to realize that nurses and doctors were evading the subject or stalling him, he quickly escalated. Swearing, yelling and screaming ensued. Security was quick on the scene, waiting to escort him and us out of the hospital. While I understand that loud voices and swearing would be considered a threat, calling three big and burly security guards to “handle” a Brain Injury Patient was quite absurd. What was more shocking was their ask to call in the Cops. What exactly they were trying to achieve by this is alien to me. We would expect people to understand what Brain Injury means, especially people working in a hospital!

We saw the back door elevators to the Emergency Room. Back to square one. Only today, they took us to the psych ward of the ER. Away from the other, more normal, cases. Out of sound. Out of view. By now, we have seen and met and been “handled” by close to 60% of the Emergency Staff. Bright side to this was that we could escalate the need to see a Psychiatrist/ Psychologist pronto! This was not something a “one year wait-list” was going to solve. Jitish’s repeated yearning to fix his eye also got the Ophthalmologist. We have made rounds to the ER about 4 times in the last month or so and have seen numerous Ophthalmologists, Neurologists and Neuro Ophthalmologists. And it has been the same conclusion, over and over. “Pale nerves to the right eye, but receptive. Unable to participate in tests. Failure to articulate. Failure to diagnose and treat at this point.”

After months of waiting for Jitish to gain more awareness and overcome his Aphasia, he was semi ready for more concrete vision tests by Ophthalmology this time. We were aware of the impending possibility for a confirmed diagnoses of Homonymous Hemianopsia. It is suspected that Jitish has visual field loss on the right side of the vertical mid-line. The right visual field is dark on both eyes. However, the brain is amazing. If he had lost vision in one eye entirely, he would have balance issues, nausea and much more complications. But a right HH has its own demons; loss of peripheral vision, bumping into objects, fear as things come suddenly in view. The hope is that he does not have HH, and instead have a corresponding issue called Hemispatial Neglect. Only if we could pick our demons.

This time the ophthalmologists tested his vision using the traditional Snellen Chart for vision acuity. Lucky for all of us, we had been teaching Jitish to read alphabets and numbers for a month, so he could begin to gain his reading skills. Until now, a standard test of this nature was an impossibility. He read the alphabets beautifully, to our joyous surprise! With both eyes. With the left. AND HIS RIGHT! Something, however, in the right visual field quadrant was not registered by him. He could barely see the fingers that the Doctor was holding up for him to identify. So we know something is wrong! We know more than we did before. But it gets us nowhere close to a confirmed diagnoses and treatment.

Our lucky beans, the psychologist and his resident walk in. More so, because Jitish had expressed self inflicting threats in the Recovery Room. So this had to be standard for them. Good for us, we can finally prove that an expedited Psychology examination was required. At the earliest. Not a year later. Not a few months later. Now.

While I expected that the psychologists were skilled professionals who could point us all in the right direction, I was hoping for some divine intervention. Before they had come in, Jitish decided to prep us. Telling us to tell the doctors to take off his right eye and whatever was inside his brain causing the problems. There was no easy way of talking him out of this. Clearly taking out the eye or pieces of the brain was NOT AN OPTION. I wish we could just tell him that, scream it out and expect Jitish to register. Hmf. So we agreed and told Jitish we would ask the Doctor’s opinion regarding his plea. The psychologists walked in and evaluated him. Speaking directly with him. All ears. Somewhere mid stream, they realized that Jitish was fantasizing a solution. Despite being told that replacement and cutting things out was not an option, and not a solution, Jitish continued to coax them into agreement. Finally, they turned to us. and armed us with three management options.

  1. Deflect. Change the topic. Use music, games, exercising, change of scene. Deflect.
  2. Identify Patterns. Study when these bouts of anger come by. Are there certain things causing it? Leading up to it? Loss of sleep, disturbed sleep, stress, diet, tiredness, pain?
  3. Sedation. Use smaller doses of relaxers, sleep medicine to calm him. Not drug him. Trying to get him to ‘chill out’.

Deflection has been working pretty dismally for us. He is highly focused and very sharp when we change the subject. It might work for a few minutes and he is back on the topic. Music helps. He loves listening to songs and often remembers words from old and new Hindi songs. A few other techniques. Not quite a solution. Sometimes, not a solution at all.

I have been documenting his behavior and anger for a few months now trying to identify patterns. I have formalized this now. His anger level, medications given, caffeine intake, exercise time, therapy days, etc. Hoping to catch the culprit. On some level, I know that it is his increased awareness and moving ahead in the Ranchos’ stages that causes him these bouts of extreme anger, frustration and confusion.

anger management

As for sedation, we have started him on the very least amount. He has a heavy cocktail of medications already, and there is no reason to pile on. Instead, We have put him back on caffeinated black tea, Desi Style, 72% dark chocolate, fish oil and almonds.

We are running out of ideas. We welcome any you might have.

4 Comments Add yours

  1. navinarjun says:

    Hi Soumya,
    I can offer some suggestions based on my past experience, when I was in a similar aggressive state.
    Though I never analyzed it in detail on why I use to get soo angry & lost my cool, I guess when life hands you down something so cruel, one has to find a way to vent it out. Whilst one is bed ridden, in a fairly twisted logic, to get your heart beating faster anger comes naturally.
    Coming back to trigger reasons for when I remember I would get very upset were:
    – Medical staff around me which was not empathetic – I would loose my cool easily with nurses or ward staff if I found that they don’t appreciate my situation. This was also true of Doctors who came and didn’t converse properly with me, giving me positive prognosis and confidence that ‘whatever it is will pass’.
    -Crowding of (a lot ) of people around me and visitors (who came to see me) start having their own conversations in front of me, making me realize how much I am not part of normal life.

    Things which calmed me down relatively were:
    – Hope from any side that things will be back soon, specially from medical staff and Doctors.
    – If friends/visitors come to see him, try to get them one at a time, rather than a crowd. There is better connection on individual level and don’t feel that we are missing out hanging in a group of friends.
    – Discussion of future holiday plans & visiting places in future which he likes.
    – Plans on what he would like to do in future (something he really liked doing or wanted to do all these years). In my case as an example I wanted to go & study at Harvard Business school. Within a year of my coming out of the hospital I did finally go to Harvard to do a small course.
    -Try to celebrate special days/small achievements/birthdays/anniversaries etc in a limited way in the hospital – which basically gives him sense of improvement.
    – Also try to see if you get his laptop/ipad-notepad etc, is he responsive. My wife got my ipad in the hospital with me, which though I couldn’t browse, it brings familiarity and can listen to songs etc.

    Please feel free to write to me at navinarjun@gmail.com or call me at +852-91551151 (Hong kong mobile), in case you want to have a chat on this.

    Wishing & praying for Jitesh and you, forever always.
    Navin

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  2. Hi Soumya,

    I’d like to suggest painting or colouring using big, easily manageable colour pens. (My mom had offered this to a patient with waist-down paralysis and it helped lift his mood).

    Also, again, kudos to you. What are you made of? Steel? Titanium? Gold? ALL! If tomorrow something like this were to, god forbid, happen to anyone, I hope they have a partner like YOU.
    You sound like a doctor yourself. You’ve understood the science of it and applied it so well.
    God knows you might be having problems and issues of your own and still your sole focus is Jitish. I hope you realise how extra ordinary you are and how lucky he is to have you by his side.

    The universe is conspiring for you two, in the best possible way.
    Praying for Jitish and you always.

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  3. Purnima Udyavar says:

    Hi Soumya .. Kudos to you dear. I look forward to your blog, your new post with a hope every time that things are getting better for Jitish and they will for sure with the kind of determination you have in you to see him through this and very soon this will only be a nightmare that you woke up from to a beautiful new beginning so keep your chin up.

    With you by his side nothing can go wrong its only more patience more endurance and more good luck to you both. Praying for Jitish every day every few hours when i join my palms to surrender to the Lord to help my dear friend Soumya. On a note for suggestion I thought the above few were brilliant ideas. Music plays wonders too and if you can play softly some of Jitish favourite music that he liked to sing perhaps earlier ??? Am sure you are doing a lot more yourself . Jitish is going to have lots to read when he joins you soon and narrates his side of the story its going to be a best sellers , a book written by one of the most lovable couples. So hang in there and there is a light ahead of a dark tunnel. Lots of love and hugs…

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  4. Gayatri kcp says:

    Hi Sowmya
    I heard about your journey through a friend and read through every post of yours. I hope it gives you strength to know we are all sending positive thoughts and love to you and Jitish. I am praying for the divine forces to unite & help the both of you heal.
    You are so dedicated in your mission to bring Jitish back to his past glory. So you probably don’t even digest the words of praise directed towards you. But you should know that Jitish is blessed to have you. Blessed to have your love, your care and your concern. All these accumulate to a ball of positive energy that benefits him. So acknowledge your worth; it adds to the positive energy you transfer to him.
    With regards to future directions, Jitish is an accomplished & intelligent man. Though his current state is going through repairs, at the core he remains the same & is struggling to get out. Do you think it would help to have conversations as in the part where you ask for his opinion as an authority on the subject? Something as mundane as picking decor to how to put a broken faucet together? Or on a higher level on how to deal with an imaginary job conflict? As people who have made it on our own, we value our independence & being part of a intelligent & giving conversation. Being constrained by health and having to depend on others for someone like that is stifling. Triggering his logical decision making on simple tasks might make him feel more in control.
    You have made the best judgement in terms of the available medical treatments & rehabs. The brain is a complex neurological material system that thrives on oxygen feeds. Try traditional pranayama to ventilate the cells & increase the oxygen flow rate by training the breath. Aum chanting triggers the energy centers of our body channeling energy flow for recovery &greatly improves the brain health in general. Stick to simple, age old tested yoga exercises such as anulomb vilomb, and deep breathing, and a minute of Aum chanting . Kriyas require fine tuned techniques that can be harmful ( hyperventilating)if not practiced correctly.
    Praying for positive vibrations your way!
    Feel free to text me at 781-530-6703.
    Best,
    Gayatri

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