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. 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.

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(*name intentionally changed for privacy)

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Update 12/22/15: after posting this story here, I learned that our patient was featured in the local news. See link here.

 

 

A Christmas Miracle

We have entered the month of December and Christmas is only 3 weeks away. For this month I would like to re-post stories that happened around Christmas, which I have witnessed first hand, and that I have written several years back.

I first published the following story, “Gift of Life,” on December 15, 2010.

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Gift of Life

Everybody said that her pregnancy was ill-conceived and ill-advised. But who are we to judge her?

Mary (not her real name) lies in our ICU. Her 21-year-old body looks frail and debilitated, her skin is pale and sallow, and her breathing is irregular and shallow. Attached to her sick body are a number of tubes, catheters and monitors. The regular bleep and tracings in the monitor screen above her bed tells me that she is still alive, although she looks otherwise.

Mary was born with cystic fibrosis. This is an inherited disease caused by a defective gene that causes thick mucus plugging of small tubes and ducts, mostly affecting the lungs and the digestive system. Patients suffer with frequent lung infections, digestive problems, and usually succumb with respiratory failure or liver failure. The disease is fatal that many patients will die in their childhood and adolescence. However, in the past few decades, with the improvement of care, patients who made it through adulthood has an average lifespan of 35 years.

Mary’s childhood was anything but normal. She was in the hospital or doctor’s office so often more than she was in school. She was on medications constantly. She had known more doctors than childhood friends. She experienced more than her share of suffering and disease. But she had beaten the odds. Now, that she made it through 21 summers tells me that she is a fierce survivor.

But now, this pregnancy. Her family doesn’t want her to have this. Her doctors told her that her body may not be able to tolerate the additional stress of pregnancy and that it will be very high risk to continue. But she made up her mind that she will keep this child whatever the cost.

Due to developing problems and complications, she was admitted to the hospital’s maternity ward on her 32nd weeks of conception, where she was expected to stay for the rest of the pregnancy. However, after a few days in the hospital her condition worsened. Her liver function deteriorated and she went into fulminant hepatic failure. Mary slipped into coma. She was then transferred to our ICU.

Because her baby may get compromised further, we had no choice but to deliver the baby, even if it was barely 33 weeks old (full term is 38-42 weeks). Mary underwent an emergency caesarean section.

Now, 3 days after her baby’s delivery, Mary still remains in our ICU. She continues to be comatose.

As I stand beside her bed to examine her, I see the pictures of her newborn baby posted on the wall of her room. Being a parent, I cannot help but feel a twinge of sadness. Will she ever know that she brought forth a beautiful baby, premature, but otherwise healthy boy? Will she ever hear the yearning cry of her dear child? Will she ever see the sweet smile of her son? Will she ever hold her baby in her arms, the life that she fought for so dearly to bring to this world, even if it meant going against medical advice?

I just hope that someday this precious boy would be grateful and proud to the mother, he may never know. And may he appreciate and realize the challenges, the difficulty, the sacrifices her mother went into, to give him the gift of life. Yes, even in exchange of her own life.

But wait. This is Christmas season. Time of miracles. Maybe there will be one here tonight.

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Post Note:

After I published this story, Mary did improved and recovered. She got out of the ICU and eventually went home to take care of her beautiful baby. I took care of Mary a few more times and I always asked her about her baby boy. Her son became her pride and joy.

Sadly, Mary eventually succumbed to her illness last year, leaving a very young son, who at least experienced a mother’s love, even for so short a time.

I got a Robot for Christmas!

There’s a robot now, roaming inside our house. You read it right. A robot. No, it’s not as technically advanced like the NASA Mars Rover, but it does explore the expanse of our whole floor. Nor it is an alien robot, like the Transformers that can disguise like an everyday machinery, but it does do household chore.

Meet Flori (a.k.a. taga-linis ng floor), my new iRobot, Roomba Model 560, vacuum cleaning robot. It cleans our floor by itself and then goes back to its dock when it’s done. It even has a feature that it can be programmed to clean our floor on schedule, up to 7 times per week. Maybe they should add a feature that it would play some music too, instead of the hum-drum noise it emits, while it is vacuuming.

Flori cleaning our floor

After many years of wishing that “somebody” can takeover the mundane chore of cleaning the floor, which is my designated task since I was a boy (using bunot and floor wax) and that I carried over to this day (see previous blog here), finally my wish came true. I am really happy that I got this gift under my Christmas tree. I am not saying though that the manual labor of cleaning the floor has not given me any satisfaction. Or maybe it doesn’t, but it certainly builds character.

Yes, it may be a little slow, as Flori takes about 20 minutes to clean one room that I can do in under 10 minutes, but I am not complaining at all. She can take her sweet time. And me? I can use that 10 minutes in doing something else – like blogging. She may not be as good in cleaning the corners and nooks, or under the furnitures, and other hard to reach spots, but then again, I don’t mind that at all. As long as she does not run amok and take over our house like an out-of-control runaway machine, just like the plot of so many robot or intelligent machine movies, I am content.

Now if “somebody” could also clear the snow in my driveway for me, that would be really cool (I mean hot….or warm, as I would not be freezing my ears doing it, you know what I mean). Is it too early to make a wish list for next Christmas? A fully automated, industrial grade, robotic snowblower is definitely in my list. A GPS-guided, fully automated, self-propelled, robotic lawnmower would be delightful too.

Santa? Santa? Are you listening?