Thursday, June 19, 2025 – Day 310

Thursday, June 19, 2025

Good morning, y’all. Let’s make it the best day possible.

Yesterday was the big GI appointment at Evanston Hospital to discuss surgery for a feeding tube. We left the house at noon, and let me just say—these appointments near the lake are an all-day affair. Round trip? Seven hours! For context, I could’ve driven to Minocqua in five, had two hours of cocktails, stared across the lake, and found inner peace—all in less time.

On the way, we stopped in Lake Forest to pick up a fancy new walker—bells, whistles, and the works. I’m actually looking forward to taking it for a spin. Yep, I said it. I’m looking forward to using it. As ALS progresses, having tools like this gives me a sense of independence and control. Huge thanks to Di for making that happen.

We then drove past our old house in Lake Forest. I was curious how the place—and the neighborhood—had held up. As expected, a few new builds have popped up, but overall, it looks much the same. 114 Washington Road has a new exterior color, but it’s otherwise identical. That might be the Lake Forest College effect—preservation over progress. A wave of bittersweet memories washed over me as we drove through. Ten years of life lived there… maybe a blog post for another day.

We pulled into Evanston Hospital at 2:30 for our 2:45 appointment. Thanks to the hospital portal’s pre-check, we were right on time. At 2:45, they called me in for vitals—BP, HR, O2, weight, and height. All as expected—except the height. I stood as tall as I could and stretched out to 5’11”. I told the tech to round up to 6’0” so I’d still match my driver’s license. He nodded, not sure if he was humoring me, but I was dead serious. I’m sticking with 6’0” until the end—or until I get a pair of inversion boots and straighten this spine out.

Then we waited. And waited. After 30 minutes, a Fellow came in to go over my history and discuss the procedure. I mentioned my old laparoscopic hernia repair from nearly 30 years ago. So, naturally, he asked to inspect my belly button. He seemed impressed…no visible scar…looks good. I still say my belly button looks like a wrinkled mess and a lint trap, but hey, I’m glad I cleaned it out that morning. No surprises for the doc.

Once he was satisfied that my navel passed inspection, he asked if we had any more questions. We didn’t, so he left and said the surgeon would be in shortly. Then we waited… again. Another 30 minutes. Now, this is a far cry from my sarcoma surgeon, Dr. Bilimoria, who removed my tumor back in 2019. He was a rockstar—brilliant, personable, and always punctual. Sometimes, he’d beat me to the exam room. Those were the days.

Finally, the GI surgeon came in. We revisited much of the same Q&A, then dove into the surgery details. He walked us through the procedure and outlined the risks: sedation complications, potential colon puncture, or the rare case where they can’t successfully place the tube. That last one opens up a whole new set of options, which we didn’t explore (and I hope we never need to).

The upside? He’s never had a complication—aside from one patient whose stomach sat too high behind the ribs, blocking the placement. So… reassuring? I think? Then I wondered, “Why aren’t all stomachs located in the same anatomical space?”

The bottom line: we’re going ahead with the feeding tube, and sooner is better. He mentioned doing up to 10 procedures on Mondays and thinks there may be a slot for me this coming Monday. Great! Although now I’m wondering—do I want to be surgery #1, #5, or #10? Not that I get to choose. Just hope he brings his A-game to all ten.

I’ll be heading to my primary doc today for some pre-surgery labs. Luckily, they had an opening, so I should be all set by this afternoon. YEAH!!

We hit peak rush hour on the way home. Two hours in the car, and rain didn’t help. We debated stopping for a drink but had to pick up Bear from day play. So, we opted for the next best thing: McDonald’s. A quarter pounder and fries—1,000 calories and 40 grams of protein. If I could eat like that every day, I might be able to stall the feeding tube a little longer.

All in all, I’m happy with how the day went. I was bracing for delays and weeks of waiting, but we came away with a real plan—and a very short timeline. I’ll take it.

Have a great Thursday.

Love you guys! ❤️