In life with SMA, I’ve learned to go with the flow
Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally.
I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more difficult to place each time it needs to be exchanged. It clogs much more easily than it should. And every time this happens, I have to make an emergency trip to the hospital about an hour and a half away.
On days like these, my parents and I drop everything. My father and I have to take time out of work. We have to find a dog sitter, pack a bag, carry all my feeding equipment, and get me in the car as quickly as possible only to wait hours to be seen. Nothing goes according to plan.
Unfortunately, this plan happens far too often lately. Just the other day, I woke up to the sound of my enteral pump beeping. Digitized letters alerting “NO FLOW” scrolled across the screen. After many attempts to get it unclogged, to no avail, we trekked to the hospital again.
As my mother got me settled on the procedure bed, she saw my new tube placed on the table and realized the ports were different. This raised some concern, so she questioned the nurses. It turned out the government had mandated new ENFit connectors for every feeding tube. Though this change has been slowly rolled out for a couple of years, we were not made aware of it. Nor were we prepared for it.
The new connectors require new syringes. Syringes are how we administer my meds, and without them — well, I’m sure you can see the problem there. Thankfully, the hospital was kind enough to give us some to hold us over. We left the hospital thinking all was well. But as I said before, life doesn’t always flow the way it’s supposed to, especially when it’s life with SMA.
Not even 48 hours later, we ran into our next debacle. The ENFit connector that connects my feeding tube to the feeding bag was stuck shut. When I say stuck shut, I don’t just mean it needed a few minutes of wiggling and twisting. I mean it was actually sealed shut somehow.
My parents worked on it for two hours. It was a Saturday morning, and we were all looking forward to a slow, uninterrupted start to our day after feeling a bit frazzled by all the headaches my previous tube had caused that week. Instead, we were trying to come up with creative solutions to unscrew the connector. We tried soaking it in hot water. We tried banging it with a wooden spoon. We even tried to melt the plastic with a blow dryer. Nothing worked.
A Google search led me to see that others were having the same issues, but no solutions were given. So my father called my medical supply company hoping for some answers. They were clueless, too, which prompted us to resort to plan Z: my brother.
Being the saintly brother that he is, he got his kids dressed, packed them up in the car, and came to my rescue. After some fidgeting and Hulk-like strength, a pair of pliers eventually unscrewed it. The feeling was so freeing, I felt like I could fly. Unfortunately, my quiet Saturday morning was still ruined.
Learning to expect the unexpected is one of the many lessons SMA has taught me. But even more so, this lesson has taught me to always be willing to adapt at any given moment. Even if you’re fast asleep or looking forward to basking in the slowness of the morning, you have to learn to adjust to your circumstances. You have to figure out a way to make things work. And sometimes you just have to go with the flow. No pun intended.
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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