After the only working nephrostomy tube fell out Tuesday, we were told to expect renal failure. But yesterday morning, Hubby perked up. Perhaps because Son Jeremy and DIL Denise joined Daughter Summer here in sunny Bend.
Nurse Melinda says Hubby has tenacity. (I think that’s a nice way of saying he’s stubborn.)
He’s broken all the rules, she said. Maybe there’s still something he wants to teach us.
I’ve been sitting in this favorite yellow child’s chair — a garage sale find — a good part of the day. To be near him. To catch every word he says. Hubby has let his filters down these past few days. He is childlike at times, in an endearing way. He scolds me, rolls his eyes, stalls when he doesn’t want to take his meds.
Hubby is on oxygen. Packing a pump. Wicked thrush on his tongue. Only one neph tube draining. Leg weeping from edema, soaking everything. Clothing changes and dressing changes and flushing of tubes. Around the clock.
Being hooked up to oxygen involves a bulky machine with miles of tubing. But it also puts out a soothing background noise – like a stream, water burbling over rocks. We now have a water feature in our living room.
Hubby’s playful spirit is still in evidence through the shutting down of his body. He ordered French toast for breakfast. Drenched in syrup, he said.
The attendant leaned in close to confirm that she had heard him correctly. Drenched?
How about just drizzled in syrup, said his wife.
We’ll see when it gets here, countered the patient. You can see who won that battle.
This rather suspicious text message: “The marketing porch fairies have landed.” I know about the Porch Fairy. And the Knitting Fairy. But Marketing Porch Fairies?
I text Daughter Summer who is out running errands. Warning. Something on the porch. Not sure what. She sends photos: “Two grande Chai tea lattes, a pumpkin pie and candle holders … with candles, of course.” Love the pumpkin theme.
Understandably, Hubby gets a little nervous when I approach him with anything sharp. One of Hubby’s nephrostomy tubes clogged up. Last night I played night nurse. All night. Dispensing meds through Hubby’s port. And I did a darn good job of not poking the patient where he shouldn’t have been poked.
We checked into Hospice House this morning—no room in the inn last night—which means the medical care for my favorite patient is now off my shoulders and squarely on the shoulders of those who know what they’re doing.
It has been the season of saying a long, slow, sweet good-by to Hubby. Wednesday was hard. He slept the entire day, ate very little, was confused during the brief times of wakefulness. The sleeping, the not-eating I can handle; the confusion is frightening.
It seems that he makes a greater effort to be awake when we’re expecting visitors. And look who showed up on our front porch. Sis-in-law Cheryl and Niece Angie. Hubby has been more awake; he’s eating. And most importantly, no confusion. Ah, hope. Sweet gift.
One of our cancer team members is a positive attitude. And nothing says positive attitude like counting blessings. Not only do I keep a written list–constantly adding to it–but also a thanksgiving list rolls through my head. Like when I make a prescription pick-up. I find myself breathing thanks that the car starts. Whispering gratitude for the freedom to move about town, the hospice team, the availability of meds, the pharmacy that fills the scripts … you get the idea.
Despite hard things, there’s still so much to be grateful for (for which to be grateful?):
1. A generous package in yesterday’s mail that included the smell of Yuletide Cinnamon candles—it’s never too early to light a Christmas candle—and the reminder that, indeed, all is well with our souls
I’m now working full-time from home, and there is no shortage of visitors. Co-workers bearing banana shakes, mango smoothies, dark chocolate. This text from a friend: “Hiya – can I drop off a little something sweet to yous this early afternoon?” All in an effort to entice Hubby to eat.
Copyright © 2025 Marlys Johnson
