Caring for a person with an illness means hitting all the right notes
The clinicians and therapists on my son's medical team make beautiful music
As a former band director, I understand the importance of each musical instrument in an ensemble. The percussion keeps the rhythm steady. The low brass offers the foundation of the music, and the trumpets, flutes, and clarinets play the melodies. Each section contributes to the overall piece. Music is an example of teamwork at its finest.
Caring for someone with a chronic condition also requires many members of a medical team to play their respective parts. Like a musical piece that flows from phrase to phrase and chords that need resolution, an entire ensemble must sometimes be involved in the performance. One person cannot do it all.
My youngest son, Caeleb, is 17 and lives with severe hemophilia A and an inhibitor. His journey has been filled with complications and chronic pain, which is not something a young person should have to contend with.
As part of his care, Caeleb sees a physical therapist, an orthopedic specialist, an orthopedic surgeon, clinicians at the hemophilia treatment center (HTC), a psychiatrist, and a counselor.
Recently, he had missed all but three days of school over three weeks. I knew that something more needed to be done to help him, so I called the HTC out of desperation.
Caeleb’s hematologist called in a favor and an appointment was scheduled within two days to see a different specialist, a pediatric doctor who focuses on chronic pain in children. Pain is felt through various pathways, so the specialist prescribed a new medication to see if it might better help the pathways where Caeleb is experiencing pain. It will take time to see if this new course of treatment will work, but I hope it will.
Sometimes a fresh perspective is needed
Caeleb has been cared for by physicians here in New Mexico, where we live, and by doctors out of state, all of whom have been instrumental in his care. In this instance, I was glad we were able to bring someone new onto his medical team to offer a different perspective.
When treating a case with severe complications, doctors must sometimes seek out others who may have a different perspective. However, physicians aren’t always open to receiving advice about how to care for their patient.
An important lesson I have learned about my son’s care is to be willing to ask questions and push doctors to look for new perspectives. Having a doctor you trust is terrific, but having the strength to stand up to a trusted doctor and ask questions can be uncomfortable. But when an answer doesn’t present itself, another opinion from a different physician can make all the difference.
Many years ago, Caeleb’s inhibitor proved difficult for the HTC to treat. My husband and I asked if we should seek help from the HTC in Denver. The physician in New Mexico was excited we were willing to go the extra mile to get help, but getting the two HTCs to communicate with each other took some effort.
Fortunately, reaching out to a new care team resulted in this physician creating a document with a number of different scenarios. We called it the road map. My husband and I relied on it to know exactly how to treat our son in any given situation. The road map also gave the clinicians involved the information they needed to troubleshoot when treatments weren’t working.
Teamwork is challenging. I am grateful for the doctors, clinicians, therapists, and support staff who have cared for my son. They make beautiful music together as they play their parts on his medical team. When this song ends, another will begin, and perhaps the newest member of the ensemble will have precisely what Caeleb needs so he may look forward to his future.
Note: Hemophilia 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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