Oct. 6, 1997. My husband, Randy, and I snagged a last-ditch effort to save our baby Jeffrey from spinal muscular atrophy’s deadly vise: meeting with a pulmonologist who was trying gabapentin on another young child in North Carolina. We were desperately eager to learn whether or not Jeffrey might benefit from the drug and from a BiPAP machine.
The morning we left for the appointment, Jeffrey required suctioning almost immediately. The battery to the suction machine malfunctioned, so we headed back home. While I was suctioning, Randy tracked down a car adapter. We picked it up and once again hit the road with impressive optimism.
The three-hour fall drive was gorgeous and relatively uneventful. Upon arrival at the clinic, we were greeted by a friendly, accommodating staff.
And then the descent into hell began.
I enthusiastically explained to the pulmonologist our purpose for being there (BiPAP and gabapentin). He seemed to listen before leaving the room and returning with an In-Exsufflator, a cough machine. It was familiar from my frantic scouring for something that might thwart SMA’s progression. I mentioned warily that I’d read that it was best used for those old enough to follow commands. Jeffrey wasn’t even 5 months old.
The one with the expertise replied, “It helps, but it’s not necessary.”
Short version of the experiment: It didn’t go well. Jeffrey ended up in respiratory arrest in the office, the ER, and the overnight hospital room.
It signaled the beginning of the end. For real.
Oct. 9, 1997. Two nurses and a social worker from hospice came to the house. They had never had an infant patient before.
After a few questions, one asked, “Who will your backup person be when you get sick?”
I considered it an odd question but answered, “I won’t get sick.”
The questioner gently begged to differ (something about stress level) and repeated the question.
I repeated my answer and then added, for her satisfaction, that if a separate crisis warranted backup, either Randy or my mother could take over. I knew they’d never need to, though. We didn’t have that much time.
Besides, I already had a backup — just not of the human variety.
During the weekdays, I tend to our grandchildren, Clara, 5, and James, 3, while our son Matthew and daughter-in-law, Jill, teach from home. Two years ago, James had a terrifying case of croup, caused in part by coronavirus. No one will forget it, and no one wants to risk a repeat, so he’s enjoyed being home almost a year with Clara, who participates in virtual pre-K classes. James might conjure up a coughing fit if he thought his bountiful MomMom time was in jeopardy.
I also take care of whatever my mother needs. Mom, 88, lives independently less than a half mile from Randy and me. Her downstairs apartment is in what used to be her house; now it’s Matthew and Jill’s. The family’s collective outings are rare, and since her “roomies” teach from home, it’s been quite effortless to shield her from bad bugs.
Randy has been driving a bus in a nearby college town and suspected there might have been some questionable COVID-19 cases. Due to his age, he halted his driving stint until he could receive both rounds of the vaccine.
Matthew knew I wasn’t sold on the vaccine, but that I also didn’t want to risk infecting anyone unwittingly. He asked me to please take it with Randy. Mere days later, Randy, Matthew, Jill, and I were summoned by a friend volunteering with the health department to come “right now” for the first round of the vaccine. Snow had kept a lot of folks with appointments from claiming their first vaccine, and they didn’t want to waste any. We dropped everything and made the 30-mile trip. I balked initially but promptly realized that this had fallen into our laps. It was a gift.
The first vaccine left us with sore arms. As round two approached (last Saturday), I began hearing about more substantial reactions with the second injection, including fever, a general icky feeling, a sore arm, and achy everything else.
I didn’t fret about experiencing serious side effects myself, but I thought it wise to prepare for the unknown (like writing most of this column ahead of time. Great idea! If only I could have retrieved it from the computer).
And then, thinking about Clara and James, my optimistic self went haywire. What if Matthew and Jill felt horrible, and the predicted big snow kept Randy and me from taking over for the day? What if all four big folks were zombies?
“Who will your backup person be when you get sick?”
Summoning angel intervention.
I’m delighted to report that all four of us survived. Besides a sore arm and some slightly stiff other parts, I enjoyed the best sleep since being rendered unconscious for my hip replacement in 2015.
Backup? Angel intervention.
Works every time.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?