Friday, January 9, 2026 – Day 514
Friday, January 9, 2026
Good morning, everyone!
Happy birthday to Linda B. in Arizona—one of Cindy’s many cousins. 🎉
Feeding tube saga: three weeks and counting. I’m officially sorry I ever mentioned the degradation of my original feeding tube. Yesterday was my appointment in Grayslake for what we were told would be measurement for a new feeding tube.
Barb and Mark came along for both moral and physical support. Transfers in and out of the car are risky for me these days, and if something goes sideways, it can quickly become a real problem. Having extra hands—people willing to carve out a big chunk of their day to help—is incredibly appreciated.
We arrived 45 minutes early. I don’t like being late, and you never know if they’re running ahead of schedule. I checked in at interventional radiology, got my wrist bracelet, and then we waited. The waiting area was comfortable, lightly populated, and—best of all—not filled with coughing, sneezing people. That alone felt like a win.
Within ten minutes, a nurse named Camila brought us back to what looked like a full hospital room—monitors, pumps, assorted equipment, even a TV. I was expecting an exam room, so this was a surprise. She confirmed that I was, in fact, me. One of these days I’m going to go off-script, give the wrong birthdate and see what happens. Probably nothing.
Camila then explained the procedure that was going to be done. “We’re swapping out a low-profile feeding tube with another low-profile feeding tube.”
WHAT!?!?
Cindy and I looked at each other in disbelief. That was not what we were told. We explained that this appointment was supposed to be for measurement, not a swap—and that we were supposed to discuss options and choose a tube that actually worked for us. That led to a longer conversation, ending with Camila assuring us we could speak with the doctor before anything happened.
So I went through the motions—changed into a hospital gown, got helped into bed, and was rewarded with two wonderfully warm blankets. Heavenly. I could have easily fallen asleep if not for the lingering concern that we were there under false pretenses. Camila made sure we were comfortable and said the doctor would talk with us once he finished his current case.
About an hour later—only fifteen minutes past my scheduled time—the doctor came in. We walked him through what we had been told, what we expected, and how I ended up with the current feeding tube… including how it has limited my independence.
To his credit, he was patient, listened carefully, and didn’t rush us.
When all the explanations were finally on the table, we were left with three options:
- Keep the existing tube
- Swap it for something similar
- Switch to a button system where a tube is inserted for each feeding
Cindy and I looked at each other and landed on the same conclusion: We have something that works. It’s not perfect—especially compared to my original feeding tube—but let’s not create new problems trying to chase perfection.
We thanked the doctor for his time and detailed explanations. I got dressed, and off we went.
Net result? A full day burned because something that should have been explained clearly over the phone never was. I don’t know where to point fingers—communication along the way has been incomplete at best. Mostly, we were told: this is how it’s done—take it or don’t come in.
At least I have a feeding tube that works. It’s Jerry-rigged, but it works.
Now, if someone could just fix the communication mess in our healthcare system…that would probably save billions of dollars.
Meanwhile, I’ll take my morning meds through my feeding tube—because swallowing pills without choking is no longer an option.
Have a great Friday. Love you guys! ❤️
