“Freedom is strangely ephemeral. It is something like breathing; one only becomes acutely aware of its importance when one is choking.”
William E. Simon
After the accident, at the hospital, everything was too unreal. Every spike in cranial pressure or irregularity in blood pressure had to be solved immediately. Doctors would rush in. They would do their magic and keep him alive another day. It was all fast moving, no moment to sit and relax. No time to take it all in. But there was an understanding that “this too shall pass”, that everything here and now was fleeting and temporary. Some sort of fleeting assurance that gave us hope. I had very little to no information about traumatic brain injury or its long term effects. Ignorance helped tame the madness. I assumed that once the immediate danger to his life passed, he would open his eyes and we would go home. Pick up the pieces later. Naive and protected from the life that was unfolding. Silly.
Over the next couple of weeks, I was introduced to the (relative) permanency of a brain injury so severe. My defenses stopped me from taking it all in. This was just another challenge, and Jitish always overcame challenges beautifully. Jitish would open his eyes and recognize everyone. He didn’t. I expected him to open his eyes to a world he understood. He didn’t. There were other families waiting for their loved ones to wake up, and I would hear them rejoicing. A lady who suffered a stroke woke up from a coma 45 days later and called out for her daughter. Another gentleman in a motorcycle crash woke up screaming with pain. Jitish didn’t wake up to call out for anyone. He didn’t scream. He didn’t move. He opened his eyes and looked fixedly and vacantly at a single spot on the ceiling. We switched on the television right in his field of vision. Nothing. We got colorful balloons. Pictures. Nurses and Doctors conducted finger tests and flashed lights in his eyes, to get any feedback. Still nothing.
Slowly but surely, The long term repercussions of a traumatic brain injury were becoming obvious to me. Time made it rudely difficult to not see it. 35 days after being in the ICU, it was time for the Doctors to discuss next steps. They suggested moving to a Long Term Acute Care facility. It felt like a kick in the stomach, as if they were all giving up on him. There was nothing more they could do beyond making sure he would be alive. It was not how I pictured leaving the hospital. I did not want to think of the next institution Jitish had to go to. I wanted it to be home. But that was not an option. Jitish couldn’t be moved to a nursing home, a rehabilitation facility, or home just yet. His breathing was weak and no rehabilitation or nursing facility could take him. It was clear that we needed Jitish to get his ability breath back. Time had become of essence. It was made clear that the faster we got Jitish the treatment and medical attention he needed, the better the outcome.
There were quite a few long term acute care facilities, and picking the right one was a tough decision. We spoke to everyone who had any information. Doctors, nurses, and social workers.
“Do you think this facility will focus on getting Jitish better soon?”
“Do they have the equipment and expertise to help Jitish breathe on his own again?”
“How long-term is this going to be?”
The social worker at the UW neuro ICU was a gem of a person. Among the many, they helped us narrow down to two facilities. One in the Madison neighborhood and the other toward Milwaukee. She helped us schedule a meeting with the coordinators at the latter while we poured over the brochures and webpages. It was a fairly new facility, which meant hygiene would be taken care of. The only downside was the location, it was too far away from Madison or our “temporary” home. Everyone emphasized that we need to pick a location that is convenient for the caregivers as well, but really at that point of time I wanted to get Jitish the best shot at recovery. Just a month ago, Jitish couldn’t even be moved out of the ICU for an MRI or a CT Scan. He couldn’t be moved in his bed, even for a bed bath. And now he was going to be moved in an ambulance an hour away. That made me very nervous. Usually getting out of the Neuro ICU would be a moment to celebrate. But we felt no real victory, because we were losing the many who really cared for Jitish round the clock. And had hoped Jitish would wake up before we left. Kick in the stomach. There was not a lot of time to think. We had to act.
Whatever facility you choose to go, keep your priority in constant check. The priority is to get better and to get to normal life. Whatever facility lets you achieve that, go for it. It is not permanent. If you feel you made the wrong decision, change. Find another facility. The “long term” verbiage was unsettling. I refused to think of this place as a long term, permanent solution. This was temporary. It had to be.
Besides the big move for Jitish, we had a relatively minor logistical issue as well. We were already living out of a Best Western at Madison. That luckily for us, after a month of stay, kicked back the taxes on the room and gave us a flat 50% discount. (Thanks, Bala, for negotiating this for us). Moving to a new facility, way out in Peewaukee, meant bargain hunting again. We found another Best Western just a few blocks from the LTAC. So we could be besides Jitish all the time. Always ask for hospital rates at hotels. Most hotels in the near vicinity will offer patient rates. Enquire. Unfortunately this one didn’t.
On the 12th of June, 2016 we moved. Jitish ahead in the ambulance and the rest of us followed. I didn’t drive just yet and friends came over to help us move. Vishram and Pawas helped us pack and move from Madison, making our way to the next stop. We drove through the city of Madison. Memories of Jitish and I walking down State street, care free and happy. Replaced with such a shock. The castle we had built was crumbling.
This LTAC was in a relatively green patch in the outskirts of the city. Jitish had a room to himself, with a window that looked out to green fields beyond. Turkeys, Peacocks and Deers would pay us a visit. I wish Jitish could have seen. But he opened his eyes and stared on his left, at the door. His world was limited to the left and nothing existed beyond that. The injury to the left of his brain debilitated his perceive anything beyond. Jitish loved animals, and I hoped this would make him turn right. Not yet.
Jitish had started to anchor his eyes onto objects by then. He wouldn’t just stare vacantly ahead. So we would walk from his left, his eyes fixed on one of us, and walk slowly to the right, hoping his eyes would follow. But we would lose him at midline.
We had frozen food stocked up in the fridges, quick and dirty meals. Eating was torture to me, while Jitish was being fed a liquid diet through a tube. We used to eat meals together, that is how I loved it. Cook together. Eat together. Not this. This was torture. We would sleep at the hotel for the night, with one of the fathers taking a night shift with Jitish. Wake up, breakfast, and hail a Uber to the hospital.
We would spend all day with Jitish, with short breaks. I did my physical therapy, hobbling around the campus. Jitish had some therapies. Speech therapy at this stage involved having Jitish learn to swallow. Learning to swallow little beads of water on a cotton swab and tiny ice chips. I hated seeing him go through this. Learning to live again. But we all persevered on. The focus at the LTAC was to get Jitish to start breathing on his own again.