Helping With an Infusion Reassures Me of My Son’s Independence

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

Share this article:

Share article via email
push through the pain | Hemophilia News Today | Main graphic for column titled

My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours away. I immediately went into crisis mode.

Within seconds, I considered possible solutions. Fortunately, it was still business hours, so Julian contacted his pharmacy. An overnight shipment was scheduled, and all was well for the moment. He assured me he would be fine until the factor arrived. RICE (rest, ice, compression, elevation) was on the agenda for the rest of the day.

When Julian’s shipment arrived the following day, there were no supplies included. I am grateful to have plenty of extra supplies on hand from my youngest son Caeleb’s previous treatments. After finding the correct syringe and butterfly needle, I was at a loss. I could not find a tourniquet! There was a time when I had several tourniquets scattered throughout the house. They were as common as tissue boxes.

Recommended Reading
fitusiran | Hemophilia News Today | Illustration of presentation

Fitusiran Curbs Bleeds in Hemophilia A, B With Inhibitors, Data Show

After Julian mixed numerous vials of factor, he began to infuse. When pushing product peripherally with a large syringe, it sometimes takes longer. Julian’s hand began to hurt, and he asked me to take over and continue the infusion.

I took the syringe and slowly pushed the remaining factor into his vein. It felt strange to infuse Julian, as I had not infused him in over 10 years. Memories came flooding back. From the first times I accessed his port, to the moments when I squealed with joy at blood flashing back in the line, indicating I had the needle in the right spot, I recalled some pivotal moments in learning how to help my son live with hemophilia.

I also thought about the times when my husband and I held Julian down so a nurse could find a vein. He would cry and scream, not understanding why his mommy and daddy were holding him so tightly. At times, his veins didn’t cooperate, and we had to make numerous attempts to find one. Hemophilia often brought grief and pain to my son, but he had no choice but to move forward.

Hemophilia seems very far away when I think of Julian. I think it’s because I don’t see him as often as I would like. Hemophilia is no longer the main topic of our discussions, and I assume all is well. I know he regularly infuses, and even went to his hemophilia treatment center appointment during his visit.

My son is a responsible adult. When he asked for help in obtaining factor on short notice, he simply needed to talk through the possible scenarios. I am glad that he feels he can come to his dad and me, but the truth is that he knows what to do, even in a tight spot.

Seeing my son grow into a responsible adult makes my heart swell with pride. It’s the result of learning little lessons along the way. I am grateful that he listened and learned how to gather knowledge about hemophilia.

Hemophilia does not define him. He simply deals with it as it comes, and keeps moving forward.

***

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.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.