If It's Not One Tube, It's Another

The morning after the feeding tube was placed in his abdomen, John seemed even more listless and disoriented. The doctors attributed his weakness to the lingering effects of anesthesia and assured me he would gain strength once his intake of calories increased.

Since nutrition couldn’t be delivered through the tube for 24 hours after surgery, I tried to con John into eating some lunch. Feeding him had become especially difficult because he had lost so much weight that his gums were receding and his false teeth were constantly sliding out of place. The upper denture would hang half way out of his mouth, but he wouldn’t let me remove it, so I had to keep pushing it back in. I finally got him to open up long enough for me to quickly slip in some rice, but he refused to chew it. He just left the food sitting on his tongue and stored in his cheeks. I managed to sneak in some chocolate pudding to moisten it, and then he sneezed out the whole mouthful all over himself. And me.

When I arrived at the hospital the following day, John’s breathing was uneven. He started coughing and I thought I saw an obstruction in his throat, so I pulled on a blue latex glove, stuck my fingers in his mouth, and pulled out something dark grey and squishy, but kind of dense. I thought maybe in his demented state he’d started chewing on the L.A. Times. (I still brought him one most days, even after he couldn’t read it anymore. He liked to hold it and pretend.) I dangled the dark wad way out in front of me, between my thumb and forefinger, squinting and grimacing at it, but also trying to figure out what it was. The nurse changing John’s IV bag stared at me, unconcerned. “It’s just phlegm, baby.”

Trudy called on my cell phone to see how John was doing. (Trudy usually visited John at night so she could be there for dinnertime. She’d stay and watch television with him, usually until the 11:00 news started. I stopped working a few months ago, so I normally arrived around 11:00am. I’d try to feed him lunch, then I’d put on a movie, or read while he slept. I’d leave around 3:00 or 4:00.) I told Trudy that John was ok, but that he had some congestion and wasn’t eating. She gave a relieved sigh and followed it up with, “Oh, good. When I left the hospital last night he was having a really hard time breathing. I thought he was a goner.”

One of John’s doctors, a young intern named Dr. Lopez, came in to examine him. After filling me in on the terrific Muse concert he and his wife had attended the night before, he informed me that John was running a fever, most likely because of the feeding tube placement. After listening to John’s lungs, the doctor asked me whether I would give permission to ventilate if it became necessary. I refused to discuss it standing right beside my father, so we moved to an unoccupied room.

I had heard being on a ventilator felt like trying to breathe through a straw. Dr. Lopez didn’t refute the claim. In fact, he said that a patient on a ventilator is usually sedated to prevent discomfort, and so that he or she won’t yank out the tube in frustration. He then explained that if John’s difficulty breathing worsened, and we chose not to intervene with a ventilator, we would enter, “a hospice situation.” The doctors would simply put him on a morphine drip to alleviate any pain, and let nature take its course.

My father had not drawn up an Advance Directive. I don’t know why. But I do know that if he could have imagined himself in this predicament, he never would have submitted to lingering in a hospital bed, immobile, barely conscious, false-toothless, shitting himself, with a tube in his stomach delivering protein shakes and a tube down his throat forcing air in and out of his lungs. Never.

I called Karla. She and my brother-in-law agreed: No ventilator. I called Leo: No ventilator. I called Trudy. She, of course, had the final say. I would try to persuade her, and even beg her if we disagreed, but I would not fight her on this. John is her husband and he dedicated his entire life to appeasing her. He wouldn’t want to live like this, but he would suffer it, if that’s what Trudy wanted.

Trudy sounded like a terrified child on the phone. I gave her my opinion and feared her response. For the first time throughout John’s decline, she asked what Karla and Leo thought. And then, she tearfully agreed. No ventilator.

The next morning, John’s temperature was down and he was breathing easier. The folks at USC University Hospital were eager to get him moved back into a nursing home, I assume before he caught something else and died there. He wasn’t going back to the place in Santa Monica, where he may or may not have contracted scabies. Besides, his condition now called for a higher level of care than they offer. The social worker on staff at USC suggested a critical care nursing facility called Kindred, which is very close to my parents’ old house and not far from their condo. Trudy checked it out and was pleased. “It’s very nice. And the administrator's name is Trudy. Can you believe it? There are a lot of black people there, but I don’t care about that.”