There was a nurse at our pediatric clinic that became Michael’s trusted friend as well as being his nurse. All throughout his illness Michael had to endure thousands of blood draws. A blood draw or any kind of needle poke can be a traumatic experience especially for a child but it goes to a whole new level when you have it done to you all the time. It wasn’t until Michael’s rare syndrome was established did we understand that patients with SIOD experience pain ten to a hundred times more intense than the average patient. Often this fact was either ignored or received with judgment and assumptions. This particular nurse at the pediatric clinic however, did whatever she could to lessen the pain for Michael especially by her great skill in doing a blood draw in just one poke. For more then ten years she was the one Michael depended on and trusted which dramatically altered our clinic experiences. Her kind smile and loving intentions along with her skillful techniques brought the human experience into his medical experience. She entered into a relationship with us both, Michael and I that went far beyond the scope of her clinical expertise.
On the other end of the spectrum was an experience we had with a different clinic for a one time appointment to do a diagnostic test. We were told, as the nurse was ready to begin, that this test required an injection followed by a blood draw every half hour for a total of four-six hours. The nurse was quickly frustrated by her inability to draw blood on the first poke which seemed to set the tone for the whole appointment. As well as the complexity of Michael’s underlying symptoms along with his undefined diagnosis appeared to increase her anxiety affecting her abilities. Every half hour Michael usually got more than two pokes depending upon the number of attempts it took for her to draw blood. Michael’s pain and fear grew minute by minute turning into hours of crying, screaming and physical restraining. I was upset and frustrated by so many things but mainly because this necessary yet extremely invasive test being done to my six year old son was not explained to me before we arrived. Michael and I were given no opportunity to prepare or develop coping skills prior to the appointment which could have dramatically changed what happened that day. In my opinion, what made matters even worse was a nurse who made a choice to not have any relationship with us that day even if it was for only one appointment. She put more focus on her work at hand than this scared little boy and his mother who felt like she failed him somehow. We all failed Michael that day; the clinic who didn’t offer any pre-appointment instruction and the nurse who didn’t take the time to understand him. That day I vowed to myself and Michael that something like that would never happen again. We needed something to change.