As a caregiver for my sons with DMD, how do I know what is right?
When my sons suffer from treatment, I sometimes question what we're doing
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Wrestling videos were the soundtrack to my morning earlier this week. I was staring at a beige wall void of anything except a small white clock marking the time and the black screen of a television no one uses.
Sitting in the infusion center at our local hospital, I thought about how much time my family spends in hospitals to keep our three sons with Duchenne muscular dystrophy — Max, 18, Rowen, 15, and Charlie, 13 — as healthy as possible.
There are trips to the neuromuscular clinic, cardiology and endocrinology appointments, and clinical trial and bisphosphonate infusions. I’m sure I’m forgetting something, but we’re at the hospital at least once a month. Thankfully, it’s always on an outpatient basis.
Most of these things are proactive to stay ahead of health declines and prevent the boys from spending even more time in the hospital. It’s our only path forward, although sometimes it feels like we’re going backward. We hope we’re doing the right thing, but doubt creeps in, especially when things get hard.
Tough questions without clear answers
Currently, I’m accompanying Rowen (hence the wrestling videos) and Charlie while they receive bisphosphonate infusions. We call them their “bone infusions” to avoid confusing them with their clinical trial infusions.
It’s quiet here in this room, and I keep getting lost in thought. Our sons receive these infusions to maintain bone health every six months, but I wonder if the treatment is working. Is all of this worth it?
Rowen broke his tibia when he was 11 and never walked again. Max broke his femur, fibula, and tibia in two separate falls when he was 17 and 18 and never walked again after the first incident. I’d always hoped these infusions would prevent broken bones.
Charlie had a rough morning today. His veins are small and tend to disappear as soon as the needle gets close. If the nurses happen to find a vein on the first try, it starts to spasm and won’t give any blood for lab work.
Today, the nurse found a vein on the first try by using an ultrasound, but when she removed the needle, the catheter either moved or the vein disappeared. Charlie looked at me with tears in his eyes. He hates needles and pokes. He asked us to stop.
I told him it was the only way to get the medicine he needs and asked him to try one more time. If it didn’t work, we’d come back another day. He calmed down and was willing to try again. We got the IV in on the second try, but the vein started to spasm, and the nurse couldn’t get any blood.
We were going to use the IV to deliver medication, but we couldn’t start an infusion until the lab checked various levels in his blood. He needed to be poked a third time after I had already told him he could go home if that happened.
At 13, Charlie understands the difference between an IV and blood work. This is the only life he’s ever known. So he closed his eyes tightly and said, “Just do it.”
He was silent as we proceeded, but tears fell the entire time, staining his blue T-shirt. I found him a box of Kleenex. I was also quiet, scolding myself for allowing the third poke.
Charlie has never broken his leg, although he has fallen hard enough for us to take him in for an X-ray when he complained of pain. All three boys started the bone medicine simultaneously, so perhaps it worked for Charlie, who was the youngest when he started receiving it and has been on it the longest.
But watching him suffer hurts my heart. Is it the right thing to do for him? Should we be using an oral medication instead of an intravenous one? How do I know what is right?
As a caregiver and mother, these questions plague me. It’s easy to feel like I’ve made the right decision for my sons when everything goes as planned, but not so much when things get messy. It makes me question everything I’m trying to do for them.
The only response I have is to force myself to believe that I’m making the best decisions with information available to me, but it’s not always easy.
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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Valerie Ball
My son as Becker a slower dystrophy but still takes away walking at about 21 years of age needs lifting at 53 years needed at times there is nothing can be done my sons legs are constantly in sitting position so you can imagine his life in bed not good