Tuesday, February 10, 2026 – Day 536

Tuesday, February 10, 2026

Good morning, everyone.

We had to say goodbye to Nikki and Wyatt mid-morning as they headed back home to the DC area. Having them here for two nights really broke up the monotony of my schedule and—maybe more importantly—gave me a welcome distraction from ALS. Thank you for making the trip and for giving me that time with Wyatt.

He didn’t care one bit that I was in a wheelchair. He’d walk right up and give me more than a quick, polite hug. He leaned in, paused, and let me feel his arms wrap around me—as much as he could—giving me a moment to hug him back. Just like his mom and dad.

More on breathing…it’s kinda important.

Yesterday, the respiratory therapist came by to make adjustments to my ventilator settings. It took three weeks from the time my pulmonologist placed the original order—and countless texts and phone calls from Cindy—to get this done. I’m grateful it wasn’t a critical need, but still, three weeks feels excessive when the doctor’s orders were clearly meant to help.

I told the therapist that the biggest ongoing issue is dry mouth. How machines designed to help you breathe can cause something so uncomfortable is beyond me. We talked about the humidifier that was added after my initial complaints and how, unfortunately, it hasn’t helped much. We’re nine months into using the ventilator now, and I still cringe every night when it’s time to put the mask on.

There was, however, a recommended change from the therapist that might make a difference. If we could position the humidifier below the mask, the water droplets that form in the hose wouldn’t flow into the mask and create that awful gurgling sound. The idea was to get all the condensation to drip back into the humidifier. So last night we rearranged the equipment and increased the humidity level.

It worked, almost. My mouth didn’t completely dry out, and every time I woke up, it actually felt comfortable. Then—at 3:30 a.m.—the gurgling started again, where condensation had collected in a low spot in the hose. The hose is six feet long, so it snakes its way back to the humidifier, creating a natural trough. The noise woke Cindy, and she had to swap it out for a dry hose.

I’m hopeful that with some fine-tuning—adjusting the hose layout and dialing in the humidity—we can finally get this right. It may be happening just in the nick of time. As I sit here in the quiet morning, I can hear myself laboring to breathe. My respiratory rate is over 25. I can see myself needing these ventilators more and more to give my diaphragm a break during the day. At least I have one upstairs and one on the main floor.

The home nurse is coming to the house today. I’m grateful to have people checking in on me and paying close attention. My breathing feels a little different lately, but having someone here to observe and document what’s happening brings comfort. It reminds me that I’m not facing this alone—and that there’s a clear, thoughtful plan in place as we take the next steps, one at a time.

Have a great Tuesday. Love you guys!❤️

Photos of Wyatt