When the hands-on hemo mom hears, ‘Don’t worry. I’ve got this.’
Memories of the hard times come back quickly, but my role has changed
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My son Caeleb recently had his wisdom teeth removed.
Caeleb has severe hemophilia A with an inhibitor, but hemophilia hasn’t been the main focus in his life for years. Nevertheless, before the surgery, he called the hemophilia treatment center (HTC) to ask about what steps to take, and he was told to do an infusion before it and to take aminocaproic acid afterward.
As the surgery approached, I noticed how relaxed we all were about it. When Caeleb was younger, the inhibitor resulted in serious joint damage, and, because of bleeds, he still deals with chronic pain and mobility issues. Thankfully, a new treatment has made bleeds rare and changed his life.
But something unexpected happened.
Things don’t go as planned
The night before the surgery, I was unable to find the aminocaproic acid, so I told Caeleb to ask the HTC for a prescription. If this is the biggest problem, we’ll be fine, I thought.
But then, on the morning of the surgery, Caeleb couldn’t find a vein to do an infusion. We had only 15 minutes before the appointment, so he asked me to try. I quickly switched into hemo mom mode: Check for bubbles in the syringe. Prime the butterfly needle. Wipe with alcohol. Make sure the tourniquet is tight enough.
I went vein shopping and was horrified. Caeleb is 20 now and feels different from the young boy I once infused. He is a man, and is taller and heavier than he was in school. And his legs are hairy!
I looked in the usual places where his good veins lived, and none looked viable. I found one, accessed it, and nothing — no flash of blood. I tried again with no success. I decided we would infuse at the dental office.
No longer a hands-on hemo mom
The dentist was patient and helpful. After a few more tries, I finally saw a flash of blood, but then the vein moved. My stress was high, and I felt even more anxious with the dentist watching. He even tried twice, but couldn’t get it either.
Caeleb and the dentist worked out a plan to extract one tooth and observe the bleeding. When it was done, it was the same as for a person without a bleeding disorder. His treatment is working.
Still, I felt disappointed with myself. I have two sons with severe hemophilia, and my husband and I once did their infusions. Ports and needle sticks were as normal as brushing teeth. But new treatments have changed my sons’ lives, and caring for them is different. It’s about encouragement now. I’m no longer a hands-on hemo mom, but memories of the hard times come back quickly. When I talk about those times with my sons, it’s interesting to hear how their memories compare with mine.
I carry fear, worry, and anxiety about their health. I’m sure most parents of kids with a rare disorder or chronic illness feel the same way. But I also feel excitement, joy, and pride when I see my boys make good choices. Now, I often hear, “Mom, I’ve got it. Don’t worry.”
On the day Caeleb got his wisdom teeth out, I apologized profusely. “Mom, it’s OK. Don’t worry. Everything is fine,” he reassured me. Not being able to access a vein filled me with disappointment, but my son had no worries in the world. “Thank you for trying, Mom,” he said.
Caeleb and I are continuing to grow up together. He is an adult who doesn’t need me to fix his problems anymore. He needs me to encourage, trust, and love him. My son, the one who struggled the most, reminds me, “Mom, don’t worry. I’ve got this.”
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 consult your physician or another qualified healthcare 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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