Monday, December 22, 2025 – Day 496
Monday, December 22, 2025
Good morning, everyone. 3 days until Christmas. 🎄
Cindy and I want to say thank you to all of you who have been thinking of us this holiday season. You’ve been stepping up in so many ways since this diagnosis, and over the last month you’ve taken your thoughtfulness to the next level. Packages have been appearing at our doorstep so frequently that Bear doesn’t even bark at the delivery people anymore—he just assumes they live here. Seriously, we are deeply grateful for the gifts, but even more so for the love they represent. Thank you.
Feeding Tube Exchange – Part II While we were still at the hospital going through my discharge instructions, we confirmed that the supplies we’d been using for my feedings would continue to work with the new tube. I’d love to say that was due to my proactive planning, but that credit belongs to Cindy. She always has my back on the little details…the ones that have a way of quietly turning into big problems.
Sure enough, Friday night we went to hook up the new feeding tube to the pump supplies…and nothing fit. There was no way to create a snug, leak-proof connection. Not wanting to take any chances, we bagged the overnight feeding until we could talk to someone about getting the correct connectors. Frustrating, yes—but we could at least continue with the three daytime bolus feedings using the syringe.
One thing immediately jumped out about the new feeding tube: its length. The tube I’d been using was about 20 inches long. This new one? About 6 inches. That short line created a whole new challenge. If the open end of the tube isn’t kept higher than the entry point (stoma) into my stomach, gravity takes over and stomach contents back up and leak out. Not pleasant. No chunks—just stomach liquid—but still not something you want to deal with. 🤢 Sorry if you’re eating breakfast as you read this.
Saturday morning brought another surprise. When I tried to connect the syringe to the tube, it wouldn’t seat properly or hold. Yet another frustrating moment. I had to physically hold the syringe and the tube together while Cindy poured in the water and formula.
After we finished, Cindy called the number we’d been given on the discharge instructions. Only problem? It was Saturday. The voicemail cheerfully informed us that normal business hours were Monday through Friday. We left a message anyway. As of early Monday morning (and it’s early), no one has returned the call.
I’ve been patient with this disease and with the red tape that seems to come with every step. That’s why we had the feeding tube placed back in June—long before I truly needed it. I didn’t want to be scrambling at the last minute. Now here I am with a feeding tube that it is completely different from what I’d had before, despite being told—clearly and explicitly—that our existing supplies would work. I
Not knowing where else to turn, I reached out to our care coordinator, Peggy. She responded immediately and asked me to send a photo of the new tube. The moment she saw it, she knew something was wrong. It wasn’t the tube I should have received. That explained everything—and unfortunately, it was still the tube I had. Peggy went to work. She made calls, rounded up the correct supplies, picked them up from the hospital, and then drove out to Crystal Lake to drop them off and show us how to connect everything properly. She did all of this on her own time—on the last Saturday before Christmas. She dropped everything for us.
Angel Peggy lost most of her Saturday so that we could safely do my feedings. I’m incredibly grateful for her. At the same time, I’m still angry at the hospital staff who, at the end of the day, didn’t seem to care whether things actually worked for us. They were asked to place a feeding tube by my GI doctor, and that’s exactly what they did—no more, no less.
Right now, we only have enough supplies to get us through a few days, so there are still phone calls to make. My hope is to go back and have the correct feeding tube inserted—one that allows me to remain independent. This new tube requires too much dexterity and means I always need assistance. My old setup was something I could manage on my own.
It will be interesting to see how this all plays out. I’m incredibly fortunate to have Peggy advocating for me. I can’t imagine trying to navigate all of this red tape alone.
Have a great Monday. Love you guys! ❤️
Photo from yesterday. Triplet brothers Tom and Tim stopped by with some of their family members for some early Christmas cheer. Bear is in the foreground making sure we were smiling. It worked!
