Wednesday, December 3, 2025 – Day 477

Wednesday, December 3, 2025

Good morning, everyone!

Yesterday someone asked for more stories. I’m going to try my best to honor that request, but I’ll need to plan ahead a bit. It’s tough to wake up, shake off the cobwebs, and get the creative juices flowing at 5:00 a.m. Most of these blogs…aside from the house fire story…have been written right here in the quiet solitude of my mornings.

Before I dive back into storytelling, let me catch you up on my ALS journey.

A little over a week ago, I started having recurring episodes of respiratory distress, each one tied…like clockwork…to my formula feedings. With the help of my care coordinator, Angel Peggy (and trust me, that name is earned), I reached out to my medical team. After some detective work, we figured out the culprit: those three daytime bolus feedings were demanding more energy than my body had to spare.

Given that I’ve dropped 45 pounds since June 2024…twenty months of slow, steady disappearing act…it actually makes sense. My nutritionist, Lauren, sprang into action and put together a justification for overnight pump feeding. Medicare approved it (miracles do happen), and then we just had to get the supplies and home-health training lined up.

The supplies arrived Friday—Black Friday, to be exact—delivered by a very talkative man named Gary. Gary came ready with a whole verbal presentation. We told him we didn’t need the rundown, just the boxes, but he was determined. A five-minute drop-off became thirty. That explained why he was late. His window was 4:00–5:00 p.m. He arrived around 5:30. Sadly…we were not the last stop of the day…now night.

Yesterday the home-health company arrived for my “evaluation.” I’m not exactly sure what they were evaluating…my patience? my signature? my hoarding? All I wanted was training on the feeding pump.

Diana, from Residential Home Health Care, showed up at 2:30 p.m. with an armful of forms and questions. She took vitals, reviewed meds, discussed services, and then asked my “goal” for home health care. I thought it was obvious… “Umm… learn how to use the pump so I don’t starve?”

Then she read the setup instructions: six cartons of formula (1,422 ml) over thirteen hours. Thirteen. Hours. I told the nutritionist last week that nobody—nobody—wants to be tethered to a feeding tube for that long. Lauren gave me alternatives, which made perfect sense.

Diana was not thrilled to discover I had already discussed modifying the plan. She pushed back. I pushed back. All nicely, of course. I told her if she needed to set the pump for thirteen hours for Medicare, go ahead. That softened her up, and we landed on a compromise for the first night.

Cindy mastered the pump programming, I signed a stack of Medicare papers that probably certified me as a part-time employee, and Diana headed out after an hour and a half.

By 7:00 p.m., I was upstairs getting connected: respirator, pump, hoses, mask, lines—the whole setup. The room was starting to look like a cross between a hospital suite or a nursing home. I skipped my normal bedtime reading and decided to try sleeping before anything beeped. And surprisingly—I slept pretty well. One bathroom break. Not an issue.

Then at 3:00 a.m., the pump alarm went off. Cindy got up, read the message (which for once wasn’t written in hieroglyphics), and it said: formula bag empty. Good. That I understand. We just powered it down and tried to go back to sleep.

I never fell back asleep. By 3:30 I was up, unhooking the lines, flushing the tube, and doing the rest of the routine. I made it to my comfy chair by 4:00 a.m.—ready to start the day before a day should ever be started.

We’ll try again tonight with all six cartons and see if we can avoid the 3:00 a.m. wake-up call. And I do have to say…I’m a big fan of not needing a morning feeding.

Have a great Wednesday. Love you guys! ❤️