I’m thankful our doctor can have telehealth sessions with us
Online meetings help us keep our schedules when we're busy with 7 children
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Spring is by far the busiest season for my family. I have seven children who range in age from 2 to 23 years old, and three of them, Max, 18, Rowen, 15, and Charlie, 13, are living with Duchenne muscular dystrophy (DMD).
Caregiving for my three sons with DMD takes a lot of my time and energy; it’d be enough to fill my day. But I’ve been blessed with many children with various interests and involvement in their school communities. In the past 10 days, we’ve celebrated two birthdays and had five baseball games, a volleyball game, an awards breakfast, a high school prom, Rowen’s new employee meeting, and other practices, appointments, and responsibilities.
At this time of year, my husband, Jason, and I stay up late to ensure the baseball uniform is clean and the dishwasher is loaded. We talk to each other in passing as we go in opposite directions to get the kids where they need to be. We often text each other important information because we forget to say it when we’re together. My husband has had to take days off of work to help me keep up.
Simultaneous appointments
A week ago, I accidentally double booked the boys when they had a day off school, and Jason’s availability helped get us through it. I thought the boys’ telehealth visits were in the morning, so I scheduled their pool therapy for the afternoon. I later realized the telehealth appointments were set to start at 1:40 p.m., and pool therapy appointments were at 1 and 1:45 p.m.
I’m beyond thankful for the fantastic gift of telehealth sessions. Not only did they make it possible for us to get everything done last Friday, but they also saved us time and money.
These online meetings were with an endocrinologist. To see one in person who has experience in Duchenne, we have to drive to Denver, five and a half hours and hundreds of miles away from our home in Hastings, Nebraska. Our doctor’s schedule is extremely full, and getting in to see him when we’re in Colorado for clinical trial appointments or muscle clinic visits is hard.
Initially, I thought we’d have to make another trip to Denver to meet with him; that’s what we did when he squeezed us in for our first visit. Six months later, our doctor became certified in Nebraska, which allowed him to meet with us remotely from then on. And that’s been fantastic.
That one series of telehealth appointments saves us 10-plus hours of driving and the money we’d spend on gas and a hotel room. In addition, it saves the boys the discomfort of the trip and being away from home. We don’t have to sit in a waiting room and then cram three chairs, three boys, a doctor, and a parent into an exam room.
Last Friday, after we logged in and were waiting for the doctor, we sat in the comfort of our living room, the dogs at our feet.
Better yet, we could meet our pool therapy and telehealth appointments simultaneously. Max went to pool therapy with Jason while I did telehealth with Rowen. Max came in from the pool just as Rowen finished, and I did telehealth at home with him while Jason took Charlie to the pool.
The telehealth sessions were scheduled for 40 minutes per boy. They didn’t take nearly that long, but the doctor had the time set aside for us. When I explained to him that I’d double booked the boys and Charlie was still at pool therapy, we decided to log out and log back in for Charlie’s visit after he got home.
His flexibility allowed us to get through my scheduling blunder without canceling anything. Not all appointments can be made remotely; the boys sometimes need to be seen in person at the clinic. When juggling as much as we do, however, telehealth feels like the magic we need to get everything done.
Note: Muscular Dystrophy 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 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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