Coordinating my team of nurses isn’t easy, but they have my back

Anyone can experience ironic twists and turns in life, and those of us with SMA are no exception. In my previous column, I wrote about how my mom and one of my day nurses heroically saved my life during a medical crisis.

Coincidentally, the nurse who helped save me is having a crisis of his own. He’s been dealing with extreme back pain and has been unable to work with me physically. His pain isn’t a life-threatening emergency like mine, but it’s still a tough situation for him.

His commitment to taking care of me the past 16 years is profound. Whenever I tell other medical professionals that two of my nurses have been with me for over a decade, their faces light up with astonishment.

Unfortunately, my day nurse’s back problems affect my care considerably. With him out, I’m short-staffed in the days as well as the nights, at least temporarily. Nevertheless, he’s found a way to have my back despite his own being out of commission. Instead of working days, he’s lately been working one night a week — and in that duty, he’s not handling any physical work that could bother his back.

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This new arrangement helps but by no means addresses my need for more night nurses. I wrote in April that my former full-time nurse, who’d been working three nights a week, left in January. As a result, my nurse who’d been working one night a week picked up the three nights that were open. That meant she was working four nights a week, Tuesday through Friday.

Although my nursing agency, my mom, and I have searched vigorously to replace the night nurse who left, we still haven’t found anyone, at least as of this writing. In the meantime, this summer my weekend nurse needed to switch from nights to days, which helped my day shift situation some.

Still, it meant that my night nurse who’d been working four nights a week has picked up even more shifts. She’s now working six nights a week, Wednesday through Monday.

I’ve known only one other night nurse who had the strength and stamina to continuously work six nights a week. Even though my current nurse working all those shifts is being stretched thin, she’s definitely had my back. She consistently walks through the door with a phenomenal attitude, ready to do her job. Sometimes she’ll say, “Let’s do this!”

I can’t tell you how much of a difference a nurse’s positive attitude can make in the lives of a patient and their family. My mom and I, in turn, are positive and have high hopes that we’ll find more night nurses this month. That would add more wonderful nurses to my already wonderful staff!

I’m grateful for my team

Speaking of wonderful, my day nurse who hurt his back is covering my own even more now. Instead of working just one night this week, he’s doing several because my nurse who’s been working six nights a week is going on a much-needed vacation.

Through it all, I’m thankful I can lean on the people who take care of me. My mom and I try to show that they can lean on us as well by doing special things to show our appreciation. Who doesn’t want to work in an environment where everyone supports each other? That’s one of the reasons I’m leaning on God and have faith that I’ll soon have enough nurses.

I have hope in the Lord and some strong backing from a solid team. The only direction to go is up. And as I go up, I’ll be able to reach for the things I need, as well as the things I dream of.

So get ready for blastoff in 3, 2, 1. Soar!

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.