Two steps forward, One step back

We completed one year of our (secret) married life in May; living together, enjoying the snow, finding new hobbies, falling in sync and completely depending on each other. Four years after being in the US, we returned home for a vacation in December of 2014 and got married (again), the Indian way. Also, After a year of shuttling between finishing work and going to school, I finally got my work visa. Thank you, H1B Lottery system! I was so Happy! The moment I got that much awaited email, I drove two hours to Ohare. I couldn’t just tell Jitish the big news over a phone call. He was flying in from DC the same day and would have caught the bus home. I decided to surprise him and pick him up. The second I told him about the visa, Jitish and I were jumping with joy at the airport. Jumping! Literally. I remember his face, his smile, the happiness, and the hug of that day. We decided that buying a motorcycle would now be reasonable. All the puzzle pieces had fallen in place. We got what we were working hard to get. Work Visa. His promotion. My promotion. New house. Our motorcycle.

Two steps forward.

And then one step back.

One big step back.

At the Townhall meeting, on the 9th of May, the Neurosurgeon ‘Dr. N’ working on Jitish’s case gave me the first blow; The first day I faced the seriousess of his injuries. I had my surgery just two days ago and was heavily sedated. I remember only two things from that Townhall; crying from an immense sense of loss, and the way the doctors conveyed Jitish’s prognosis,“There is a 1% to 99% chance of survival for him. We put him in a PentoBarbital Coma. Shut his system down to give the brain some time to recover. Imagine a fish, frozen under water. Frozen until it is safe for it to come out. When we think its time, we thaw the fish and hope it will swim again”. 

The Doctors at UW Madison are top notch. There are absolutely no doubts about that. We were lucky and grateful to have been taken to them. While some analogies they used were rough around the edges, they did convey the concept logically. It is hard to forget those words. But it was important to hear. Important to know.

Jitish was in a PentoBarbital Coma for two weeks! It is unnerving to know that the same barbiturate is used for capital punishment in Texas. His brain needed time to situate itself, to understand the gravity of the trauma and to conduct damage control. Jitish was monitored 24/7 with one-on-one attention. His ICU room was right in front of the nurse’s station, probably indicating the seriousness of his trauma.

Jitish loves the cold, but this cold was not one to love. The Neuro ICU unit was quiet and cold with an underlying sense of panic. His room was kept as cold as it could get. There were ice bags all around him. He was sleeping on a bed of ice. The doctors did their best to give Jitish a fighting chance of survival. They made it happen. They used every ounce of their knowledge in science and art to keep him going. A feeding tube through his nose. A PICC line (peripherally inserted central catheter) for prolonged intravenous access. Chest tubes to drain the plural effusions (blood and fluid) from his lungs. A dozen medications; antibiotics to counter infections that he might contract from staying hospitalized. Monitors surrounded him; checking his heart rate, blood pressure, oxygen saturation, temperature, brain activity.

But one little green box was the most horrifying piece of equipment that continues to haunt us all. The EVD (External Ventricular Drain). Jitish had to get an EVD to ease his ICP (Intercranial pressure). The impact had caused skull fractures, and his brain to swell up. The Diffused Axonal Injury is devastating because the damage to the brain doesn’t just occur during the impact, but the bleeding and swelling continues to damage the brain until you are taken to the hospital and a ventricular drain eases the ICP. The normal ranges of ICP is 7-15, measured in milliliters of mercury, for a supine adult. ICP can also near 20 when lifting weight. Jitish’s ICP averaged in the upwards of 20. Constantly. His ICP would shoot up in the 30s and even 40 from time to time.

My sister did more for us and experienced a lot more than I could imagine. She took the first shock and terror of the outcome. After the first few days, Jitish had already got his ventricular drain inserted.

I was recovering after my seven hour surgery in the Orthopedic Trauma ICU. I had shattered my hip and the very talented orthopedic trauma surgeons fixed the “pretzel” with Titanium plates and screws. The nurse gave me a magic button to press every 8 minutes to kill the pain. Morphine. I was hopped up and barely conscious. After my surgery on the 4th of May, the priority was to get me up and awake. Up and awake to get myself beside Jitish to spend as much time as I could with him. The urgency was driven by the lack of knowing how long Jitish had. I saw my sister in bursts and spurts, seeing her rushing in and out, or praying. I didn’t know how bad it was for Jitish. On the 6th of May, the nurses and therapists tried to get me up on the side of the bed. Moments of chaos and panic later, I was back on bed. Morphine. Blood. Sleep. I was told later  that the hematoma on my leg had burst. My sister also showed me the x-ray post surgery.

Pelvic Girdle Fracture
Acetabular Fracture/ Pubic Ramus Fracture

Other than the scars and the big swollen left leg, I would not have known anything of what had happened to me.

On the 7th, My parents had arrived from India. Luckily for us, my parents could fly in as soon as they heard of the accident. While my mother stayed with me, my father immediately took over from my sister. Someone had to be beside Jitish 24/7. His ICP fluctuated with every delicate movement. Every two hours, the nurses would come in and turn him, to avoid pressure sores. Jitish couldn’t be moved for a CT scan, or a bath, or even moved into a different position. In a matter of seconds his ICP would rise from the 20s to the 40s. The rise in ICP is indicative of the amount of swelling in his brain. Each rise meant more damage to the fragile structure. Residents, doctors and nurses rushed by his side to do whatever they could to fix the drain, to relieve the pressure. We prayed for kinks in the tube, which meant it was only a hardware issue and not a new complication for Jitish. They were intense and crude days. The first three weeks of pure terror. It was very clear, even to a blind man, that Jitish and everyone around him were fighting to keep him alive. We didn’t leave Jitish alone at all. Not one minute. My father stayed up at nights updating the family via a Whatsapp group on Jitish’s heart rate, ICP, blood pressure, temperature. Every 10 to 20 minutes we would get an update. All stable. Until there was an hours gap and we knew something happened. 

They warned us that it is going to be an uphill battle to get him medically stable. “Two steps forward, one step back”. Nurses repeated the phrase. Doctors did. Staff did. We had to be prepared.

On the 20th of May, they tried to wake up Jitish from the medically induced coma. We waited. For weeks, Jitish’s parents were trying to get a Visa to come to the US. My best friends in India, Shrenika and Garima, helped us in this trying time. On the 21st of May, they arrived. We had to prepare them of what they were about to see. The shock of seeing him in a forest of IVs in the ICU is the most disturbing image. Just before they had arrived, Jitish opened his eyes. He OPENED HIS EYES! He looked vacantly at the ceiling. It was obvious that he didn’t really ‘see’. But it was enough for us. A sign of Life. One step.

May 29th, he moved his left hand. Ever so slightly.  The hand with a non-union Humerus bone fracture. He moved his hand. Two step.

But then after a few days, there came the ‘one step back’ everyone warned us about. His blood pressure and heart rate plummeted. We were rushed out of the room. The Neurocritical care director, Dr. M, and his entire team of doctors, residents, nurses, pharmacist all gathered in the room. Doors shut. Curtains drawn. They spent endless hours with Jitish. We were trying to figure what happened. What could have happened. Any complication would be worse in Jitish’s case. Even a common cold would. A simple complication can set his brain back by days. Anything he managed to achieve over the last 24 hours would be all for nothing.

Pulmonary Embolism. Not one. Not a big one. The doctors can surgically take out or avoid a big blood clot. Take it out. But not several small pulmonary embolisms. Several small Blood clots in the lungs.  Most likely a blood clot that formed in his leg and migrated toward the lungs. Deep Vein Thrombosis. Big words. Bigger complications. Jitish would need blood thinners. The Catch 22 situation was that Jitish had bled in his brain. Treating the PEs would mean making sure, doubly or triply so, that he wouldn’t have another bleed in his brain because of the blood thinner. The doctors pulled out another miracle out of the bag. They discovered another big blood clot on his leg and inserted a small filter to catch it. What looks like the skeleton of an inverted umbrella, in microscopic form, was put in place. An IVF (Inferior Vena Cava) Filter. Hoping to catch any new blood clots that form.

IVF Filter 25 mm

My man was fighting a battle. Not just a marathon, or a tough mudder, or a triathelon. A full scale war within himself. But he made it out. My TBI Survivor.

The best you can do is to prepare yourself, prepare yourself to face whatever may be thrown your way. Keep track of every medicine that is given to him. Every change in Blood pressure, heart rate, movement, etc. Keep track of everything. While the doctors and nurses do 90%, family must do the crucial 10%. Start to document all the medicines given to him, Important treatments and procedures. Equip yourself with information. Talk to doctors and nurses. Read about the medicines. Educate yourself. Keep track of your loved one.

Now we battle to bring Jitish back to his former glory.

We came out of that nightmare,

only to walk into the next one.

11 Comments Add yours

  1. Priya Dhaval Ved says:

    Reading this is heart wrenching and its heart breaking to know that you are bearing it. Definitely words are mere expressions and may not convey the wishes I have for his early recovery, but I hope it acts as solace in your sleepless nights. I am a staunch beleiver of Bappa…Vignaharta..and I will continuously pray that he takes away all your sorrows…and showers his miraculous blessings to get your husband back to you.

    Like

    1. Soumya Nair says:

      Thank you, Priya and Dhaval. Your prayers are deeply appreciated and I am sure everyone’s prayers are a strong reason we have pulled through till today.

      Like

  2. Anusha says:

    Jitish is a fighter, and so are you and your family. I hope you receive all the support and strength you need to keep the fight on. People are reading this and praying for you, even if they do not express it in comments. I’m writing this because it took me this long to string together the right words, but have been following the blog and sharing it with people. For what it’s worth, please know that you have the hopes and prayers of many people, known or unknown to you, and I truly hope that gives you more strength, and takes you closer to what ever you needed to get out of writing this blog.

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    1. Soumya Nair says:

      Anusha, Thank you for supporting us and speaking with me on so many occasions. I remember sitting in the hospital and going through your messages. I am running low on steam lately, and hoping everyday before I wake up that something positive has changed. We have been having some really really bad days and then some better days. I just hope the positive starts to tip the balance soon.

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  3. Atish says:

    You have the guts to update all this when your husband is going through all this! Typically, I have seem people sharing their struggles after they have managed to tackle them! No one has the balls to share their pain when they go through it! You are an awesome woman!!! Your story is fated to end happily!!! An Aggie wishes for you!!
    Atish
    Texas A&M

    Like

    1. Soumya Nair says:

      Hi Atish, I am not sure if it is guts that I have, or lack there of. I have come to realize that I can control only a few things; the rest is something that is up to God, destiny or just random selection. I am being selfless and selfish by writing, hoping to draw strength and prayers from all and hopefully helping another family stricken by such an unfortunate reality.
      Thank you for your strength. I hope Jitish walks again to visit Aggieland, and I hope he comprehends again to understand what he has overcome!

      Like

  4. My wishes and prayers with you and Jitish.

    Like

    1. Soumya Nair says:

      Thank you, Lakshmi.

      Like

  5. Sharon Moran Perrine says:

    I am so sorry to read about your heart-wrenching situation. Please know that you are in the thoughts and prayers of many. The most incredible accomplishments in life are accomplished through hope and perseverance. Your courage is inspiring to so many, myself included. My youngest brother, also in his 30’s, married with two young children, had a horrible accident in St. Louis almost two weeks ago now. They could not perform the craniotomy and he too, had been placed in a pentobarbital coma, endured pneumonia, septic shock, decompressive laparotomy, the IVC filter, and now an impending double amputation of the feet due to the effects of the BP meds. We have a very long way to go and we too are hopeful that someday we can move him to the RIC here in Chicago, where we live as well. Such a small world. I was doing some research on recovery from these types of traumatic events and came across your writings. Stay strong. Believe the unbelievable. My heart and prayers are with you both.

    Like

    1. Soumya Nair says:

      Dear Sharon, I need to apologize to you for not having replied to you sooner. Thank you for your kindness and words of strength. There comes a time in the lives of a few where we make a choice to keep going and pushing or to give up. I fear the latter and I hope that time never comes. I am sad to hear that your loved one has been battling the aftermath of a TBI as well. It is frustrating to know that there are so many effects of prolonged hospitalization and medication that further deteriorates recovery. There are trade offs that are being made that we might not always comply with. However, have to be made. There is surely a long way to go and more battles to be fought. I hope you come out of this victorious and we do too. RIC is the best rehabilitation institution in the country. I hope you can get to go there and push to stay there as long as you need.
      With lots of hope and prayers for your brother and your family,
      Soumya

      Like

  6. vsandhir says:

    Hi Soumya

    Came across your blog on Facebook through some posts from TAMU students. It is almost new year and all my and my family’s wishes are for you and Jitesh. No one can imagine how strong you have to be everyday. I only know that through all your posts I saw the beautiful bond you and Jitesh have and how strong you are standing for him.
    I have faith that you will both sit together in your living room and enjoy a meal with laughter and love.

    Will be thinking of you on Christmas eve and sending out good wishes and hope.

    Take care
    Vidushi

    Like

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