Around 8:30 p.m. on Sept. 23, I entered into my bedroom after a full week of being in emergency rooms and bouncing between intensive care units. I breathed a sigh of relief. I didn’t realize I had been holding my breath.
And, believe me, I’m still processing those words as I type them.
This day was supposed to look very different. It was supposed to be monumental — in a good way, not in the way that it turned out. Because I hadn’t been inpatient at Boston Children’s Hospital since my spinal fusion when I was 13.
I was supposed to be at Boston Children’s for my first high dose of the treatment I get three times a year via a lumbar puncture that was approved by the FDA earlier this year.
The high dose of this treatment is now 50 mg, not the 12 mg that I usually have. And considering I have experienced a myriad of side effects from that smaller dose, it goes without saying that I had been mentally preparing myself for weeks leading up to the date. But nothing could have prepared me for the catastrophic curveball of severe abdominal pain that came out of nowhere and led me to the hospital in the first place.
The abdominal discomfort began in the early morning hours of Sept. 15. As I woke up and started my day, the pain became progressively more intense. My mom and I did what we usually do in any moment of medical uncertainty: we called my team that has followed me for more than 20 years at Boston Children’s. Their advice was to try Tylenol, a laxative, and/or something for gas pains.
I did what they recommended, minus the gas pain medication because my body is more or less accustomed to always having air in my stomach/intestines. So I’m very familiar with gas pains, and this discomfort felt very different. Fortunately, the Tylenol helped a lot, and I thought the disaster was averted.
The next day, when I woke up, it was a completely different story, and it quickly became clear that something serious was going on. My stomach had puffed up at least double in size overnight and was hard and excruciatingly painful to the touch. I could barely tolerate sitting up enough to brush my teeth, and soon after, my mom called 9-1-1.
Then, off we went to Baystate, with the lights and sirens blaring and me, perhaps, in the worst pain I’ve ever been in in my life. The CT scan showed the most serious kind of bowel obstruction, and the doctors said I would likely need emergency surgery that night, which is when the transfer to Boston Children’s happened.
The weirdest part of all of it was that when they were prepping me for the CT at Baystate and had pre-medicated me with a steroid and Tylenol, the pain had immediately stopped and the distension in my stomach had gone down considerably — almost as if whatever harbinger was wreaking havoc in my intestines had abruptly stopped. And when my mom, grandma and I got to Boston Children’s at approximately 11:30 p.m. on Sept. 16, a radiologist there looked at the scans and the surgical team delivered the news that my intestinal situation wasn’t as dire as the Baystate doctors had initially said.
They said that I wouldn’t need emergency surgery, which was a huge weight off of my mom’s and my shoulders. The surgical team also attributed the symptoms I was having to the fact that the entrance to my large intestine is “floppy.” Attributing this to the idea that my intestines were randomly twisting and untwisting.
In the coming days, the ICU doctors attributed my symptoms to a virus while I was working through the respiratory and cardiac issues that arose as a response to the intestinal ones. My doctor, whose team I initially called about this issue, noted that motility issues like this were common with people who have SMA — even though no one mentioned this to me prior.
I started tolerating food on Monday, though the spike of tachycardia kept me in the hospital until Wednesday. Fortunately, I had reruns of “The Office” and “Friends” to keep my mind occupied, so I wouldn’t overthink everything that had happened, as well as a few very nice nurses.
It was still unclear as to what exactly had happened when I left the ICU, and while the worry of severe abdominal pain does constantly linger in the back of my mind now, at least I’m prepared for what could happen. My high-dose treatment was rescheduled for the middle of October.
But, for now, I’m trying to linger in the moments when I actually feel good. Because those are becoming more and more of a rarity.
Joanna Buoniconti is a freelance writer and book editor. Her work is also featured in the Muscular Dystrophy Association’s Quest magazine and SMA News Today. She is a reader at West Trade Review.