Part 145 “Patient responsibility”


Overnight I am up five times, with too many things spilling out of too many body orifices. For every time I get up, Becah is up too, changing pads and probably wishing she were off by herself in a hotel somewhere. Becah gets in touch with a doctor at the medical center, who suggests we come in tomorrow to remedy the situation.

I watch a Joel Osteen talk on TV about going beyond prayers to a level of commanding in God’s name the mountains of your life to move out of your way.. I exercise a little to try to build my body strength, hoping the physical work will pump up the mental. When resting, I begin reading Richard Adams’ great book, “Watership Down”, an inspiring fable about rabbits in very human situations.

My voice alternates between clearer and more raspy, and I notice this is accompanied by (respectively) easier and more difficulty swallowing saliva. I change the bandage around the tube, which is saturated with liquid, only to repeat the process 15 minutes later.

I make the mistake of paying some bills. I am shocked and upset by the myriad of “patient responsibility” items that have been left for me as not covered by insurance/reimbursed to the physicians. I will have to contest some two to three thousand dollars worth of charges. This would qualify as a mountain that needs moving.

Later in the day bile starts flowing from the tube site. My “nurses” (GG and CC) are still over for the weekend, but they are perplexed. We contact an on-call physician, who will get Dr. Ki- (Dr. Bl-s’ colleague) to meet with the radiologist and us first thing in the morning.

We are up and off at 5:30 a.m. It is 10:00 before we are admitted to the radiology prep room, and after noon before I see my new tube – two sizes larger – installed. I am wheeled back into the dressing room, where it promptly leaks again. Two radiologists are called in to look at it, and neither has a clue of how to fix it. I am livid at this point. Becah calls Dr. Bl-, who can only sympathize. But she hears my voice sounding stronger and suggests we do an immediate swallow study.

I am unsettled at each swallow study. The tension becomes unbearable, worrying if the liquid will go down the right pipe, and how I can finally eat again (or at least drink) if it does. I sip tentatively, afraid of the possibility of failure again. What I get is inconclusive. The therapist says I didn’t aspirate and it looks much better than the last attempt; however, I still get no clearance to eat until the vocal cord procedure is done. After that she will repeat the test.

Before we leave, Jim the resident suggests deflating the balloon in the j-tube (thinking this may reduce the bile leakage). We try this, and arriving at home we find that indeed his strategy at least slowed the leaking. I am shaky and take a bath while Becah takes the girls for yoghurt. While they are gone, my tube comes out, bubble and all. GG and I work together, deflating the tube, tunneling it back in, then re-inflating it with water. Success. We tape it securely so as to not repeat this again.

The tube leaks a little overnight, and I awake very tired even though I slept fairly well. I read some more of “Watership Down”, fortunate that it holds my interest because I am really just trying to divert my mind from everything else. My mother calls with more bad news – she must have her bladder removed, replaced with a new one constructed from her intestines. The surgery will be seven hours, with projected one to two weeks in the hospital and three weeks recovery at home. Strikingly similar in nature to my (projected, at least) esophageal surgery. She will have to put my dad in an assistive car facility for the time she will be hospitalized.

I lie around much of the day with the bandage pressed tight against the tube. I am tiring of all this. I move little because I can’t bear to see the leaking and to hassle with refitting the tube when it comes loose.

The next night is interrupted by a malfunctioning feeding pump. I drag myself to speech in the morning riding on a pulse rate of only 70. Later at home I play the entire Beatles “Revolver” album, and I’m filled with joy. Music therapy. Better than anything. My blood pressure has even soared to 122/63!

The leaking abruptly resumes later as I continue my cleanup kick by rummaging through desk drawers. The problem intensifies before Becah comes in and adjusts the water level. At night, Brooke crawls into our bed and wants a back massage. She also talks about watching some more of (believe it or not) “Lord of the Rings”, but she is asleep before she can.