5 tips for ensuring a successful clinic week
How we navigate several days of clinic visits for my three sons with Duchenne
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Three boys with Duchenne muscular dystrophy (DMD), plus one mom, plus three clinic days equals much preparation. On Tuesday, the four of us left our home in Nebraska to drive to Denver for the boys’ neuromuscular clinic visits at Children’s Hospital Colorado.
When my boys were younger, getting them through the long days was tough, and we often relied on toys, snacks, and naps. The trip required two parents, and we often brought their older sister, Lexi, along for an extra hand. We pulled a wagon and had bags full of electronics, soft loveys, and blankets to keep the boys entertained and soothed.
Now, Max, 17, Rowen, 14, and Charlie, 12, are good at getting through the long days at the hospital. They bring their phones and headphones, and Mom or Dad packs their midday medications and snacks.
In addition, we can do the trip with just one parent now. This allows my husband or me to stay home with our other children.
Over the past decade, we’ve learned a lot about how to make the trip successful and minimize stress. We know what it takes to get through appointments, and we’ve discovered what we don’t need to worry about. Following are five things that are essential for us to remember during clinic weeks.
We take food with us
We bring a small cooler full of snacks to the hospital because, between all three boys’ appointments, we often don’t get lunch breaks. We are the first family to check in at the clinic in the morning, and we usually leave when the waiting room is dark.
When both my husband and I go, he’ll sneak down to the cafeteria for coffee, sodas, and sweets when energy is running low and emotions are running high. Now that the boys are older, we can leave them in the waiting room or clinic office between appointments to grab necessities.
Remember the chargers!
This goes for the boys as well as Mom and Dad. We use our phones often during visit days, and batteries start running low.
The boys use their phones to escape boredom. With three of them, there can be lots of wait time. One will have a procedure or talk with the doctor about their care, but then they have to wait for both of their brothers to do the same. They need something to do besides relentlessly tease each other until they’re bickering.
I use my phone to check test results on MyChart so that I know what discussions with providers will focus on and can think about what questions I need to ask.
We don’t worry about homework
In the beginning, we tried hard to finish the schoolwork the boys missed during clinic weeks before they returned to class. We stressed ourselves out trying to complete the work while dealing with the additionally stressful reality of long days in small medical offices. Now we just focus on our conversations with healthcare providers about disease progression and preventive measures.
We take our time
We prefer to spend an extra day or two in the clinic, rather than pack all of our appointments into fewer but longer days. This week, we had two appointments on Wednesday, one on Thursday, and a full day today. I prefer having a few days with downtime, where we can eat a nice meal at a restaurant, go to a movie, and relax. When the boys are relaxed, appointments go better, anxiety is lower, and stamina to get through exams and procedures is higher.
We bring gaming systems to the hotel
We do our best to book large, accessible rooms, but when you park three wheelchairs, luggage, three boys, and a parent or two into one room, it can feel small. But at the end of a clinic day, the boys need time to decompress, and video games are one way they can do that. I don’t need a TV; I’ll read a book, write, or walk on the treadmill at the hotel gym. I gladly pack two or three PS4s so the boys can play a game or two after a long day.
Most importantly, we follow the boys’ leads. If they want to go out after their appointments and explore Denver, then that’s what we do. If they want to order food and lie in bed, that’s what we do. To get the best versions of the boys during a stressful week, we know we need to keep them rested, fed, and decompressed.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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