Part 148 The haunted tube


I get up the next morning, and with effort, manage to drag myself in to work about 8:45. I am totally lacking in energy, and I have to force myself to just get out of bed. Bathing, eating, and getting dressed, activities that we do by rote, now require some effort to complete. I tell my tales of woe to whoever will listen. At 11:00 I leave, heading with Becah and the kids to meet with Dr. Bl-’s assistant, Allison. All morning, from work to the long medical center drive, through the meeting, my tube works perfectly, even as I complain to Allison about how horrible it is and how it won’t quit leaking. We stop in at Quizno’s to get Becah a sandwich and the leaking immediately starts. Becah changes the bandage and we proceed to Dr. Be-’s office for a swallow study.

By now just the mention of this fills me with apprehension. This time, though, I experience some success – Dr. Be- reports that my throat looks good, and I am swallowing 75-80% of my food well (what is happening to the 20-25%, though?). She suggests that I practice on small amounts of smooth, creamy foods initially. She also reassures me that the hoarseness in my voice will improve in a week or so.

We stop for yoghurt before going home. I am exhausted upon returning, this being my most active day out in a long time.

Part 147 The ship leaks, the sky leaks


I may be better in the morning, but little Brooke continues to have fears whenever Becah or I are out of sight. Becah leaves with the kids for a party and takes GG back to her home. While they are gone, I listen to the Beatles’ “Yellow Submarine” and Buffalo Springfield’s “Last Time Around”. I am buoyed by the music and happy that my nausea has abated. However, the tube abruptly leaks profusely. I piecemealed a bandage as best as I could, until Becah returned with the kids and fashioned a better one.

Brooke wants to watch “Lord of the Rings” again. I watch a little with her, enjoying both her closeness with her and, despite all the times we’ve seen it, the movie. Later I view “The Man Who Shot Liberty Valance”, the greatest western ever.

Becah is feeling the stress of caring for three persons, so I prepare dinner for the family. Bree is excited by my efforts, as she remembers the days when I routinely cooked.

After a rough night getting to sleep initially, I rest well during the night (only awaking once!). I am still fatigued in the morning. After hearing a sad sermon at church, I steer the family home in my first driving effort since my hospitalization.

Becah and I lie on the bed, tensions mounting as we discuss my ability (or not) to return to work the next week. My voice is still hoarse when I talk. We take a brief nap, to be awakened by a burst of distant thunder, signaling the coming rainstorm, which is the first precipitation in some time for this arid summer.

After a bit, we start up a game of checkers with Bree. Soon I am detecting a foul odor emulating from the j-tube. GG has returned to stay with us, and she feels this could indicate an infection in the area. I can take no more of this, and make my feelings known. Breanna dances for everyone in the den to attempt to lighten the mood. At the end of the evening, I kick back with more reading of “Watership Down”, and somehow drift off to sleep in a better state.

Part 146 Joybreak

Dr. Be- announces that the procedure went “wonderfully”. Images reveal a healthy vocal cord and entire throat area. She has given me an injection that will temporarily facilitate the functioning of my vocal cord (after which time she feels the cord should completely heal on its own). If needed, Dr. Be- will perform another procedure; however, she doubts this will be necessary.

What is equally amazing with all this great news is the fact that I arrived at the hospital at 11:30, was prepped and with surgery started by 12:50, and am kicked back at home on the couch by 4:00! I watch TV with Brooke, who observes that I am looking better. CC drops by to visit. My tube is not leaking, much to my joy. Maybe the no-stick Ace bandage is doing the trick. Becah changes it at 8:30 – the first change since 10:30 this morning, and I am elated that it looks so good and that we made it this many hours on one bandage.

This is the best day for me in some time. My physical shape is improving, and my mood is downright optimistic.

Appreciate the good moments. Never take them for granted. You never know when you will be sideswiped by changes, like I am the following morning. I awake at 4:30 feeling nauseous, and throw up shortly after. The excessive mucous kicks in again a little later. I feel weaker today (but with a weight of only 142, it would be hard to feel strong). As the morning progresses, so does my coughing up phlegm and feeling ill. I pop Phenergen to attack the nausea, but it has little effect on it and really only makes me sleepier. I drift in and out of awareness (not always a bad thing). By mid afternoon I am reduced to bouts of dry heaving and battling more mucous. I feel warm but have no fever. It is heartbreaking to have such a turn of events immediately following such an upswing yesterday.

Brookie is starting to complain more of somatic ailments. She panics if either I or Becah leave her vicinity for even brief moments. All this is taking its toll on her.

I am worried that all the coughing and retching is hurting my fragile vocal cords. Becah contacts Dr. Be-, who feels that the cords should be sufficiently strong enough at this point to handle stress. Which is good, because by early evening I am heaving again and trying anti-nausea meds, desperately seeking something that will work.

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.

Part 144 Building bears and no laugh tracks


I start the next morning with diarrhea and a weight that has plummeted back to 146. The home health nurse makes her weekly stop, and the troubled look on her face is enough for me to know what my status is. Becah drives me to my speech session; I am feeling terrible. Becah drops me off and runs quickly to work to drop off a folder with a co-worker. Susan the therapist hooks the electrodes in to start, and I instantly must I lie down, my tube erupting liquid again. Becah eventually returns and toys with the water level and balloon inflation, and I am ready to try again. The tube leaks on and off again all day, but we run a few errands and hope for the best. My voice is erratic still.

The drought continues throughout our area, with perpetually sunny days guaranteed. I am apprehensive the Saturday morning of August 6, because I must successfully make it through my daughter Bree’s seventh birthday party, firing on decidedly not all cylinders. We start strong by dancing in the den to the Beatles’ “Birthday” (that will show me), before driving to the mall to have her party at Build-a-Bear. My niece arrives with big news - she is pregnant with twins. The store is closed, though, because the manager has not arrived and the staff can’t get in. They wind up entertaining 12 excited little girls for 30 minutes outside the store, as I sit and squirm, trying to act like I feel fine. In fact, I am fatigued, and feel very tentative due to probable low blood pressure and worries about the tube holding. The store eventually opens, and I make it through all the bear stuffings and dressings up, as well as lunch at the food court. I realize the three hour stint is my longest sustained outing in some time.

Overheard at the party: Brooke leans over and tells Bree she looks like a piñata and that Brooke wants to hit her and get the candy that falls out. A friend of Breanna’s asks her how old her dad is. I inwardly cringe when Bree tells her. The little girl exclaims, “wow, you’re lucky! My dad is 78”. I breathe easier and smile.

Back at home I make fettuccini for dinner while Becah slices apples and makes bread. CC and GG are staying overnight, along with Bree’s best friend Hannah. Becah has texted her new buddy Dr. Ra-, who feels my tube should be stitched to secure it better. As the laugh tracks abound from the den TV, I am getting Disney sitcom-ed out. It happens sometimes, even to someone who handles juvenile shows pretty well. I suggest they turn on “Big Time Rush”, my favorite show of theirs, because I genuinely like it, but probably at least in part because it has no laugh track.

Part 143 Adventures in j-tubing with radiologists, or, all you really need are some good Golden Triangle genes



The next morning erupts with attention-grabbing events – Becah is late for work, my tube is leaking and the site is swollen, the dog runs out the door and won’t come back, my throat is raspy. But Brett the dog eventually returns, and I have now gone two days with no fever or vomiting. I make the best of a long tube feeding session by writing a report for work. But the tube site continues to leak, and I must apply ice to bring down the swelling.

After the usual mixed bag night’s sleep, I am up at 4:30 to go to the bathroom, and my j-tube just falls out. Becah texts Dr. Bl-, then gets her by phone. Dr. Bl- talks Becah through the process of reinstalling the tube, which she successfully does. However, when I get in the bath tub, the tube promptly comes out again. It is early afternoon before it is deemed acceptable for us to leave for the medical center, and I am wasting away from lack of food. At the center an outpatient physician fills up the “balloon” that secures the tube, then checks the system with dye and considers it fine. I walk to meet Becah in the waiting room, and fluid leaks everywhere. We return to the room to find the doctor has already left, so we wait for his replacement, who tells me I need a larger tube put in but that it cannot be done today. He fills the balloon up with five CCs of water, which stings me the entire time. A male nurse comes in with some special lydocaine cream that instantly stops the pain. We call doctor three, who flashes in from inpatient. He is a handsome, studly-looking guy, and Becah is drooling. He reeks of confidence, tells doctor number two what he did wrong, fills the balloon to seven, and pronounces it fixed enough to go home. I am impressed, only until we reach the hospital exit door, where the leaking starts up again, and I go berserk.

Becah and I spend one and a half hours in rush hour traffic travelling home, me pressing a towel against me to prevent any sprung leaks. We fight and cry about our sorry two years’ plight and how much we need a break from this insanity.

We take Brett for a walk at home, only to have my tube start leaking again. We go back to the house and I lie down. Becah pulls the cord tighter, then accidentally cuts the tape that secures it. She reaches for the duct tape and fastens it back! Radiologists? Who needs them! Her blue collar gene pool from the east Texas “Golden Triangle” is all we need!