Mickey Saves the Day

Does This Road Have Any Scenic Turnouts?

First off, if you have read any of my blog posts and have enjoyed them, thank you. I’m thrilled to have you journeying with me on this road. If you’ve been reading along with us, you know that my last three blogs have traveled on the road of post-surgery dysphagia and rehab hospitals, a tough road for sure. It gets a little worse before it gets better😊. But no worries, there are a few scenic turnouts, and this is not going to be a doom and gloom, oh woe is me blog—it will change to hunky dory soon enough. In the meantime, my road hit a bad stretch of pavement soon after I left all rehab hospitals in September of 2023 and went home.

 A Bad Stretch of Pavement

A few weeks into my new freedom in my own home with in-home occupational, physical and speech therapy things looked good. But I still wasn’t eating nutritious meals and hydrating consistently. My swallowing and chewing were impaired; only drinking a cup or two per day of fluids and getting tired of my already limited food choices. One can only eat so many pureéd grilled cheese sandwiches and pudding. On top of this was the incessant challenge of taking my daily Parkinson's Disease (PD) meds, often with gagging and nausea. People with advanced PD can take a multi-med concoction five times a day; with a critical timing element to avoid “off” times. I still can’t take my PD meds with fluids; I need something with the consistency of applesauce to take them down. I was dying, literally from starvation and I wasn’t consistent with my meds. I lost 120 pounds in seven months. My husband and I considered advertising the Dysphagia Diet Plan; for only $19.99 (surgery not included). Added to these challenges was infection. Because of my poor diet and lack of hydration, I kept getting infections; five in 3 months, all with a free night stay in the ER. Ok, enough of the doom and gloom. My husband and I turned to Jesus in raw spiritual honesty. We clung to that passage in Luke 18 where Jesus encourages us in story form to not lose heart in prayer under any circumstance. God also reminded us that we weren’t in this alone, we had many friends and family praying for me consistently; surely some good was around the bend of this ugly road. “Don’t give up, Eileen,” was a constant quiet whisper in my heart.

Mickey Saves the Day

There’s a villainous character in the futuristic book and movie Dune named Baron Vladimir Harkonnen. He’s physically handicapped and has a gigantic tube-like connection to life support. That is how I always envisioned a gastrostomy tube, often called a G tube that saves lives by putting nutrition directly into the stomach. I had a nasal-to-stomach or NG tube for three weeks after my deep brain surgery aberration and wanted no part of a huge tube sticking directly out of my stomach. But in January of 2024, we had a discussion with a physician’s assistant, who laughed with us, showed us pictures of a “Mickey” button and tube, and calmed our uneducated fears. The spelling is medically, MIC-KEY and it’s a low-profile tube with a cap on your belly (like the air-entry button on an inflatable beach ball) and a tube that extends into the stomach held in place by a small marble-sized balloon. I had the G tube placed in March of 2024 and life changed. Prayers were answered. My hydration returned, my weight stabilized, and nutrients flowed normally into my body for the first time in 12 months.

Surprises

In a previous blog, I spoke of God-surprises. I believe in them. It doesn’t happen with all G tube recipients, but it happened to me. My appetite and ability to chew, swallow, and enjoy regular food returned, replacing what had become hours of daily labor just trying to eat. I praised God for that mini miracle of the feeding tube, but other small surprises popped up. The infections all but ceased. And although I’m not chowing down 10-oz steaks and large honey crisp apples, many foods have returned to satisfy my palate like a McGriddle®. On top of that, my ability to swallow all my pills, no matter what size or quantity with a variety of sauces came back unexpectedly; no gagging, no upset stomach, not one iota of trouble taking meds. Still today, Mickey Mouse adorns my Apple watch face reminding me that MIC-KEY saves the day, but Jesus brings little surprise miracles that infuse hope eternal.