Finding strength when I have nothing left in the tank

Overcoming frustration and fear during my son's hemophilia infusions

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by Joe MacDonald |

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One night when my oldest son, Julian, was 6, we sat down at the kitchen table, preparing to infuse factor VIII, a clotting agent, to treat his hemophilia. He held out his arm, and I looked at the vein we called “Old Faithful.” Located on the top of his hand between his third and fourth fingers, it was rich and full of blood. It sat just below the skin, daring us to access it. I applied the tourniquet, wiped the area with alcohol, and prepped the needle to find the magic spot on my son’s hand.

Unfortunately, Julian had developed a fear of needles. His fear blinded him, and he had trouble staying still through the infusion process. The event proved a two-person job, as the only surefire way to access my boy was for my wife, Cazandra, to hold him down while I infused. I took pride in my accuracy, usually finding the right spot on my first try.

Julian struggled more than usual this night, and accessing his vein proved more challenging. Adrenaline overwhelmed me as my son moved around. I knew I had to succeed in my quest to access the right vein; otherwise, he stood a strong chance of suffering an internal joint bleed. The pressure to finish the procedure added panic and fear to the mix. I kept hearing a horrifying mantra: “There is no room for failure.”

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For a split second, he quit moving, offering me a quick chance to find my target. I was successful; the needle entered at just the right angle. I pulled back on the syringe and received a blood return. All appeared well, and we could breathe.

I looked into my boy’s big green eyes as he seemed to relax. The hard part was over; he could sit and wait patiently for his infusion to finish. Relief flowed through me. I wasn’t feeling like my usual self that evening, and would be glad to finish this part of my day.

But something awful happened as we continued to push the syringe full of factor VIII: The needle fell out of the vein. We had to start all over because we’d only infused a quarter of the medication. My heart fell, and I walked away to regain my composure. Anger and helplessness coursed through my veins as I struggled to gather my senses. I was afraid I had nothing left in my tank.

Every time we’d start the infusion process, Julian’s movements and screaming were next to impossible to withstand. I couldn’t go through that again.

At the same time, I felt embarrassed by my feelings of anger and frustration. In the heat of the moment, I felt like I’d failed Julian, my beautiful boy. My blind rage prevented me from being the person my son needed during a scary infusion. The shame I experienced pressed on me, like it could knock me to my knees. I stood almost paralyzed, wondering how I’d finish the task. All my energy had gone into the first try.

In that moment of feeling my absolute worst, I experienced a heart transformation. I needed to give myself grace. I’m not the only caregiver to experience frustration and heartache while attempting to help a loved one. I smiled at my boy and said, “Son, I’m sorry. I love you, but we must try again to find a good vein. Old Faithful let us down this time, but I know I can find another great spot.”

As usual, he started moving, but this time a calm came over me. Once again, I looked into his eyes and promised that the next needle would be the last. He tried his best to stay still, but fear grabbed him. As my wife held Julian down, I found his right antecubital vein, and the needle quickly found its access point. Chaos faded as the syringe pulled back deep-red blood. Hurray! We’d discovered another great spot. This time, the needle stayed in as we finished the infusion.

After we completed the process, I gave my boy a wink. We were both grateful that the procedure had proved a success and that the next 48 hours would bring a sense of normalcy. All seemed right with the world as we gave thanks that, in the end, we’d triumphed over fear.

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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