How a clogged feeding tube brought me to the edge of death

Content warning: This column discusses medical trauma. Last in a series. Read part one here. 

I knew something was wrong when I started throwing up.

After an eight-hour wait in an emergency room far from home, I’d finally gotten my feeding tube replaced — not by a medical professional, but by my dad, with a nurse nearby in case something went wrong. I’d gone 24 hours without food or water, so I wasn’t just tired; I was exhausted. But I thought I’d feel better after a good night’s sleep. All I needed was to catch up on all the calories I’d missed.

We started my feed at 5 ml/hr, which is pretty darn slow. But I still threw up. I remember aspirating some of the vomit and knowing it would come back to bite me. When my parents called an ambulance a few hours later, I was relieved. It didn’t matter that I’d just spent eight hours in a waiting room with nothing to show for it. A hospital was the safest place for me to be.

The ambulance took me to a nearby medical center. I was admitted to the emergency room and bombarded with tests: X-rays, MRIs, you name it. Meanwhile, I was jabbed repeatedly by well-meaning, but ultimately ineffective nurses. By the time they placed a midline, it was late afternoon, and I was semilucid. According to my dad, my eyes were even rolling back in my head.

All in all, I went 44 hours without food or water.

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A doctor stopped by several times. I don’t remember much, only that sepsis was thrown around as a possibility, which will send even the most self-respecting hypochondriac into hysterics. (Sepsis commercials were crafted to attack me personally.) For the most part, they were throwing spaghetti-hypotheses at the wall, hoping something stuck.

With a midline in place, I was moved out of the emergency room and into a closed unit, which meant my parents couldn’t stay with me after a certain time. The nurses promised to check on me regularly, but didn’t seem to understand that I needed constant supervision because I wasn’t able to hit the call button. I panicked. I needed my parents. I thought I was dying and was terrified of being alone.

Thankfully, my mom’s side of the family is full of medical professionals who are intimately familiar with my situation. They coached my parents through getting in touch with a supervisor, who agreed to move me into an open care unit.

Ever the researcher, my mom shared her theory with the doctor on call, pointing to several published articles on the National Institutes of Health PubMed site. Apparently, when SMA patients like me fast for an extended period of time, they can develop starvation ketoacidosis followed by metabolic acidosis: a funky little condition where the body cannibalizes its own muscles and subsequently fills with acid. (That’s by no means the official description, but it’s how my mom initially explained it to me, and because it sounds badass, I’ve continued to use it when telling the story.)

The acidosis explained my wildly off-kilter levels. Everything in my body was off. It took six days on a variety of drugs just to get me back to baseline. According to the paperwork, I also had a urinary tract infection in the form of Pseudomonas aeruginosa and aspiration pneumonia. I spent Christmas in the hospital, watching cheesy Lifetime movies and wishing I could eat any food at all.

Writing all this, it doesn’t seem particularly scary. I’ve told the story so many times that, for the most part, the terror has lost its teeth. But I almost died.

I didn’t realize just how lucky I was to be alive until I got home and started the parade of checkups that come after a hospitalization. Every single doctor has been aghast. My pulmonologist actually swore under her breath while leafing through the paperwork given to me when I was released from the hospital.

The more I think about the experience, the more traumatic it appears. I was far from home, surrounded by medical professionals with little to no understanding of my rare disease. They had no idea what was wrong. If it weren’t for my mom, typing away on her phone in the corner of the room, reading research article after research article in the hopes of finding an answer, I probably wouldn’t be alive right now. And that’s terrifying.

Unfortunately, that’s just part of life with SMA.

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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.