A New Bout of Chronic Pain Brings Up Old Memories
Once again, caregivers and a medical team make up a new healthcare plan
My youngest son, Caeleb MacDonald, is a 16-year-old with hemophilia and chronic joint pain. Several times this year, the pain has become so intense that he cannot get out of bed.
I cannot help but associate his new pain issues with his earlier years, when he suffered multiple internal bleeding episodes. As a result of prolonged periods of spontaneous bouts of bleeding due to complications related to hemophilia, damage occurred in his right knee and ankle. The harm proved so severe that an MRI showed no cartilage in either joint.
Monday, we have an appointment with an orthopedic doctor to help determine the next course of action regarding treatment. As my wife and I prepare to talk with our medical team, I cannot help but feel old muscles flex, as we must chart a new map for Caeleb’s healthcare.
I remember the freedom my family felt as we helped my son’s doctors and other health staff create a way forward as my son navigated the ugly side of hemophilia. Very quickly, we witnessed the success of mapping out this strategy. Through the gift of collaboration, we took direct action in helping Caeleb battle chronic bleeding episodes. Over time, my son no longer had issues that hospitalized him for weeks.
The thoughts of creating that initial medical road map swirl through my head, as I know we must form a new guide for his current needs. As much as I appreciate communication with my son’s medical team, the anxiety of planning the next course of action can sometimes prove overwhelming. I carry a lot of scars left from the past into his managing his needs today. Yet I must remember that he does not face the nightmare he did many years ago.
As the time draws near to speak with the orthopedic specialist, I must remain calm and listen as we decide on our next steps. Together, medical professionals and my family make up the best team for my son. His welfare is our top priority, so we must trust one another to provide the best care possible for Caeleb. I hold tight to the reality that all team members have my son’s best interests at heart.
Once again, my family must exercise our trust in the wisdom of the medical colleagues who treat my son. For any map to be successful, we must rely on the knowledge that each party brings to the table. We hope to weave the fabric of excellent healthcare by stitching together each medical decision. We must combine our guidance as parents with that of the medical team. Anxiety may rear its ugly head, but common sense must prevail, as well as the belief that sharing information will make my son’s life much more prosperous than our strength alone.
We start our journey to create a new and improved road map to help my son manage the ravages of past destruction. We initially struggled to take the path, but we know we have Caeleb’s best interests at heart. Equipped with every ounce of our past experiences, we move into a world with endless possibilities. Our steps accomplish our wish to ensure that our son lives a life filled with promises.
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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