Last Walk of a Fallen Jedi

(It’s Christmas season once again. Also in 10 days the new Star Wars movie will be out. I would like to re-post a story of one of our ICU patients. The original article was posted in December 2015, “When You Wish Upon A Star Wars.”)

I entered the room and stood silently at the foot of his bed, watching him breathe. He was hooked to a small ventilator that is connected to a mask covering his face with straps around his head, that he looked like a jet fighter pilot. Beside the bed was his father and his mother who were obviously distraught, yet trying to hold off tears.

Luke* (not his real name) was one of our ICU patients. Even though he was only in his 20’s, he had his fair share of surgeries and hospitalizations than many patients in a geriatric floor combined.

He had a genetic disorder that prevents the development of various organ system. This affects the skeletal system giving them a peculiar look and stature, that some people coin the term FLK syndrome: Funny-Looking Kid. Though for me, there’s nothing funny at all. This disorder also causes heart defects, and can involve other organs like the lungs, liver, gastrointestinal tract, lymphatic and blood system. Even so some people with this genetic disorder could live to adulthood, some would succumb to this disease early in life.

Luke had a number of surgeries to fix his heart problem, and other procedures too many to recall. He had been treated in well-known hospitals like Mayo Clinic, for his disease. But despite of all the technology and medical interventions, his body continued to betray him.

For the last several months he had been in and out of the hospital, usually staying for several weeks at a time, including ICU stay. I have taken care of him a number of times in the past.

In spite of his illness, Luke tried to live his life as “normal” as possible. His family gave him the opportunities and the best care they could. His mother, who was a patient of mine too, had the genetic disorder as well, albeit with a milder manifestation, thus I knew the family well.

One thing I learned, was that Luke likes Star Wars, even though the first Star Wars movie came out more than a decade before he was born. Perhaps he envisioned himself as a Jedi Knight. Yeah, he was a fan of this movie genre, just like the rest of us, I guess.

In this last hospital admission, Luke came in with a lung infection causing respiratory failure, requiring intubation and mechanical ventilation. He came on Thanksgiving Day.

After several days in our ICU, we were able to extubate (take out the endotracheal tube) him, only to place him on a non-invasive positive pressure ventilator (NIPPV) with a face mask, as he cannot breathe on his own. This is like a CPAP machine. At least he can stay awake and not be sedated on the non-invasive ventilator, and he can speak as well. He can only tolerate a limited time off the NIPPV, and had to be hooked right back on it. He would not survive without it.

As I watched him with his “jet-fighter mask” with his bed as his vessel, what came to mind was that in a cruel twist of fate, this kid who likes Star Wars, now breathes like Darth Vader: whoooh….poooh, whoooh…..poooh, whoooh…..poooh. Every breath, there’s a gush of pressurized air coming out of the ventilator and through his mask.

After one holiday, another one is approaching. Christmas is just around the corner. And Luke remains in the hospital, ventilator-dependent, with no clear sight that he’ll get better. He knows it, and his family knows it. Luke’s days here on earth is numbered.

With wishful thinking, maybe he can linger a little longer to see the new Star Wars movie which he was looking forward to seeing for the longest time. But how? Him in the hospital? On a ventilator?

But wait, isn’t it Christmas season after all?

Wish granted!

After making elaborate arrangements and collaboration, Luke and his family will be going to a movie theater, to be accompanied by some medical staff, for a special private showing of the “Star Wars: The Force Awakens,” when it opens this weekend.

After that trip to the theater, Luke will be going home for Christmas with his family, on hospice care. No more hospitals. No more ventilators. No more pain.

Perhaps he could stay home until Christmas. But if not, Luke could soar into the heavens and once and for all, walk on stars. His final home.

********

Post Note: Luke made it through Christmas. He eventually lost his battle few months later.

Barriers

He was always there.

Constantly standing outside the ICU room, that is closed by a sliding glass door. He looked worried. The expression on his face was if he was begging for any news or information to any hospital staff that goes in and out of that room. Except that even when we tried to talk to him, he does not comprehend any word we say.

He does not speak English. Yet I believe he had a sense of what was going on. I think he somehow knew that something very bad was going on. Except nobody can really confirm it to him in a language he can understand.

His wife was inside that ICU glass room. Lying in bed hooked to several monitors and to a life-sustaining machine. Infusing into her veins were several liquid medications in upside down bottles hanging from poles. Coming out of her body were several tubes and catheters – some in natural body orifices, and some in surgically made openings.

The room was a negative air-pressure isolation room. Meaning, that all air droplets were being suck out of that room to a special outlet to prevent from spreading. And all personnel that go into that room needs to don a gown, a mask or a respiratory hood, and gloves.

As he stands outside that glass room looking in, several barriers are separating him from his sick wife, and from the world.

First is the physical barrier of being in an isolation room. This is being done as we suspect she has a highly contagious disease that can spread not just to the other hospital patients, but also to the hospital staff. If only he can be constantly at her bedside. Of course he is free to go inside the room, as long as he wear all those protective gear.

Second is the language barrier. Being a new immigrant to this country and not understanding its language can be very isolating. Not able to communicate even the simplest of questions is already difficult, how much more understanding a very complex situation.

Perhaps he and his wife came to this country to escape hardship or persecution. Perhaps they came here to pursue a dream and to begin a new life. Then, this happened. Which leads me to the biggest barrier of all, the barrier of the unknown tomorrow. What will happen to his wife? To him? To their dreams? And their future?

For the past two days we have been talking to him only through a phone interpreter. Due to the circumstances’ limitation, most of the conversation with him was to explain a procedure or a test that is needed, and to obtain his consent. Consent for blood transfusion. Consent for the CT scan and MRI. For the spinal tap. For chest tube insertion. For percutaneous abdominal drainage catheter. For bronchoscopy. And other more. But sitting down and explaining to him every nitty-gritty details of her wife’s illness and its prognosis, we have not done yet.

Finally, the social worker was able to get an interpreter to come to the hospital. Being an obscure dialect of a certain language, it was hard to get an interpreter in person.

So I sat down with him, and with a live interpreter, explained in as much as I could, the gloomy situation. I explained to him the severity of her wife’s condition: with overwhelming still-to-be-determined infection, plus the ravaging systemic lupus affecting almost every organ including the brain, the odds were plainly against us.

As I converse with him through the interpreter, I learned that he has no relatives and the only family he had here in the US is his wife. I also learned that at night he still goes to work at a meat-packing factory so he can keep his job, and then come and stay in the hospital all day. Somehow he just tries to sneak some naps in the ICU waiting room during the day. No wonder he looked so haggard. Life can be tough at times.

Then he asked me the crucial question, “Would my wife get better?”

I gave him my honest answer, “I don’t know.” I told him that there’s a possibility that his wife may die. Even though she’s only 22 years old.

His face became more saddened. Perhaps that’s an information that he was afraid to learn. Now through the interpreter, he fully grasps the gravity of the state she’s in. Sometimes I think, that not knowing is better. Perhaps not understanding, is bliss.

Two more days passed, and he was there most of the time. Outside the glass door. Looking. Pleading. Hoping. I almost wanted to avoid him, for there’s no comforting words I can say, with or without the interpreter.

But today is different. I cannot wait for the interpreter to arrive so I can talk to him. I needed to tell him the news. I think we have found an answer. I think she is slowly getting better.

I needed to tell him, that I believe she will live.

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(*photo taken with an iPhone)