Last week, I traveled with my sons Max, Rowen, and Charlie to Colorado for their multidisciplinary neuromuscular clinic visit at a children’s hospital. My husband and I typically don’t both travel with the boys, so one of us can stay home with our younger daughters. This time, it was my turn.
I share seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
The boys all had a clinical trial visit and infusion on the first day. On the second day, we met with specialists in rehabilitation, physical therapy, pulmonology, neurology, social work, and psychology.
Overall, we had good visits. We discussed the results of Max’s and Rowen’s sleep studies and learned that they will both need to start using a BiPAP machine at night. That will be a big change for them and for me as a caregiver, since I will be the one to help adjust their masks and turn the machines on and off. However, it wasn’t a surprise, so I didn’t really need to process it. Once the BiPAPs are delivered, we will figure it out.
However, there was one discussion — actually, a continuation of a conversation that started at our visit six months ago — that my sons and I need to process.
That probably sounds like bad news, but it’s not. It is great news. Since Max is almost 21, it is time for him to find care at an adult clinic, not a children’s hospital. We weren’t always sure Max would live to adulthood, so this transition is something to celebrate.
However, finding new providers for him is terrifying.
Overcoming my fears
When we started the conversation six months ago, at a rare clinic visit where Jason and I were both there, we were upset and angry. Max was 4 when he was diagnosed; Rowen was only 2, and Charlie was a baby. Our sons have only ever seen pediatric specialists for DMD care, and our clinics have always been at a children’s hospital. We were caught off guard when we learned it was time for Max to transition out. We weren’t angry with our team or the hospital; we were just scared, and it came out hot.
We have been at this with Max, Rowen, and Charlie for their entire lives. Disease progression has only increased their healthcare needs. Leaving Max’s team of doctors at this point is downright frightening.
My family is so comfortable at our current clinic. We know the nurses, the doctors, and even the people who work at the reception desks. We know what food we like in the cafeteria and often run into staff members we know there. I know where to refill water bottles and which floors have the best bathrooms for my sons.
It goes beyond physical comfort, though. It’s knowledge, too. I know the best way to contact Max’s doctors. I know who will get me specific referrals and who can help me with insurance authorizations. Most of all, I like how all the doctors work together to make sure Max is well cared for, and that it’s not up to Max or me to share the information everyone on his team needs.
We have options. We could stay at a hospital in Colorado and schedule Max’s appointments to coincide with Rowen and Charlie’s visits to the children’s hospital. We could switch all three of our sons to a clinic that treats both pediatric and adult patients so we can keep all their care in one place.
We have time before we need to decide, so I will do some research and talk with other parents about their experience with adult care. Most importantly, I’ll work to overcome my fears about this change by reminding myself how beautiful it is to have this problem. My son is an adult, and that’s a good reason to celebrate the decision we need to make rather than stress over it.
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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