Reestablishing Communication With the HTC to Manage My Son’s Pain
My youngest son, Caeleb, is a sophomore in high school. Being with his marching band “people” makes him very happy. Caeleb plays the trumpet, but he also plays the synthesizer in the percussion pit (which performs from the sideline) during marching season. I am grateful for the band director’s flexibility in allowing Caeleb to be part of the percussion section, because marching isn’t easy for my son.
Marching may not seem like a difficult activity for a 15-year-old boy. However, Caeleb has two target joints, his right ankle and right knee, which are damaged from numerous hemophilia-related bleeding episodes. Caeleb recently called me during practice complaining of severe pain. I picked him up early, and what I saw stunned me.
Caeleb limped toward the car. He always walks with a slight limp, but this time he was in obvious pain. His leg was at an odd angle as he compensated his gait to limit his pain. His face tightened with each step. Once in the car, he was on the verge of tears. I called the hemophilia treatment center (HTC) because I knew it was important to report the intensity of his pain.
I didn’t know the nurse who returned my call. Is it possible to have a new HTC nurse and not know? She read Caeleb’s chart after hearing my concerns, and it was apparent that she wasn’t familiar with him. I asked which doctor was on call, and again, it was one I didn’t know.
There was a time when going to the HTC weekly was the norm. Caeleb saw the team of hematologists regularly, and they understood the complications that wreaked havoc on his body. I knew that whenever I called, either during or after business hours, a clinician on the other end of the line would know my son and his needs. While the constant visits and complications were difficult, knowing that a team was truly familiar with my son’s condition was comforting.
I never dreamed there would be a time when my relationship with the HTC would be low on my list of importance. The relationships developed over the years have taken time and effort. Frequent visits meant that Caeleb was more than a patient seen on occasion. He was a boy the staff and providers knew well. I should be happy that I am out of touch with the HTC personnel, but the reality of Caeleb’s health is still hard to comprehend.
I equate my relationship with the HTC to that of a dear, old friend. This friend knows your history, shares inside jokes that date back over 40 years, and when picking up the phone to talk, it’s as if not a day has passed since last speaking. Unfortunately, with Caeleb’s pain increasing, it is time to reestablish my relationships within the HTC.
I give great thanks that my son has enjoyed several years without joint bleeds. Unfortunately, the effects of long-term bleeding are now affecting Caeleb’s daily living. It’s time to start the conversation and determine how to help my son continue to live a life filled with possibility.
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