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. 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?
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.
(*name intentionally changed for privacy)
Update 12/22/15: after posting this story here, I learned that our patient was featured in the local news. See link here.