When a last-minute trip takes a turn for the worse
Content warning: This column discusses medical trauma. First in a series.
Who really knows what time it is? 11? 12? 1? Time blurs when you’re on the precipice of something that will throw a wrench in all of your plans.
I’m lying in bed in our newly purchased recreational vehicle, staring at the ceiling as my dad tries valiantly to unclog my feeding tube. It’s the worst possible time for it to be clogged. My parents and I drove all the way to Florida from our home in Minnesota to buy an RV, and while we packed an additional feeding tube kit in case of emergencies, the prospect of swapping it out in a different state is more than a little daunting.
We try everything from hot water and Pepsi (or Coke if you’re one of those people) to thoughts and prayers. But the tube is unrelenting. It’s nearing 1 a.m., so I head to bed without a feed, knowing we’ll figure it out in the morning.
Or will we?
Of course, morning comes and nothing has changed. The tube is still clogged. We’re still staying in an RV park on the beach in a different state. Frustrated and armed with our in-case-of-emergencies kit, my dad and I leave for the nearest emergency room, hoping they’ll be able to replace the tube. (Technically, my dad could swap it out himself, but after a few previous unsuccessful attempts and a whole lot of trauma, we never change it without a nurse’s supervision now.)
The first ER we visit is on the dirtier side. I am, admittedly, spoiled by the variety of hospitals within driving distance of our Minnesota home, but I’m concerned the staff won’t know how to change the tube correctly. I convince my dad to drive another 45 minutes to a larger campus that will be more reminiscent of the hospitals in Minneapolis-Saint Paul. It’s about 11 a.m. at this point, so I’m getting pretty hungry. My spirits, on the other hand, are high, mostly because I have no choice but to thrive in situations like these.
We arrive at the second hospital and immediately feel the hope draining out of us. The waiting room is packed. I have never seen an ER so busy. Misery and sickness hang heavy in the air. We take a seat at the far end of the room, hoping to avoid the germs that are swarming this place like bar-goers on singles’ night.
You know how when a group of people goes through something traumatic they form unassailable bonds with one another? That’s how I feel about the people in that waiting room. I spend hours observing them, overhearing their stories, and sharing in their triumph when they finally get called back for another round of tests. This perceived sense of fellowship sustains me for the first couple of hours.
Then the fatigue kicks in.
I haven’t eaten or drunk anything since 11 p.m. the previous night. It is now 3 p.m. the next day. I’m supposed to have an empty stomach when I change my feeding tube, but time is sluggish and the ER is packed and I can’t wait any longer. I sip conservatively from a bottle of water and eat a couple of Cheez-Its. Neither make me feel better.
My dad and I sit in the ER for eight hours. By the time they call us back, I am nauseous and weak. The doctor apologizes for the wait but tells us she has no idea when they’ll have time to get to me, so my dad decides to change the tube himself. A nurse observes as he pulls out the clogged tube and eases the new one in. Euphoric, we start a feed and head back to the RV park.
The ride back is difficult. I’m nauseous and a little foggy. I chalk it up to carsickness and sleep most of the way. It’s 11 p.m. when we finally crawl into bed, exhausted and banking on a good night’s sleep.
Nothing could have prepared us for what happened next.
Thanks for reading! Tune in next time as I continue my account of arguably the worst thing that happened to me in 2023. You can follow me on Instagram and Threads, subscribe to my newsletter, or support me on Substack.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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