Glad Wrap wisdom from a mom of 2 hemophilia patients
My muscle memory is a source of practiced tips and tricks for hospital stays
“Use the Press’n Seal to cover his bandages when showering!”
That’s the text I sent to the wife of a hospitalized friend, who was preparing to be released after an arduous stay. Hearing of his plight with doctors, nurses, and a second surgery was reminiscent of past hospitalizations with my youngest son, Caeleb. All the years of caring for both of my sons, who have severe hemophilia, brought this random tip for showering to mind.
Caeleb hasn’t been a hospitalized patient for almost 10 years. The periods when he was frequently in and out of the hospital are distant memories, but sometimes they come rushing back in an instant. It’s funny how something like covering his bandages with Glad’s Press’n Seal cling film for a shower comes back so naturally. It’s become muscle memory. And when I heard my friend’s voice laced with exhaustion, I remembered Caeleb’s exhaustion well.
The years when my youngest was in and out of the hospital for joint bleeds seemed endless. It developed into a routine that started each time with a phone call from the clinic saying the doctor wanted us to get checked in.
That was go time. Caeleb’s bag would be packed with clothes, favorite toys, and treasures. Mine would be filled with laptops and chargers, cold-brew iced tea with a pitcher and sweetener, and snacks to get through the long days and nights. Finally, the community bag, as we called the one for family visits, would be filled with books, puzzles, and items to temporarily shift the focus from the weight of what Caeleb was enduring.
Witnessing my son’s pain was devastating, but having these familiar items around us brought a sense of comfort and normalcy.
The other part of the hospital entry routine was wondering which of our nurses we’d see first and which room we’d make into our home on the sixth floor, which housed the special pediatric unit. Would it be the coveted, extra-large Room 10 at the end of the hall, or the one by the nourishment room, where we could hear the hum of the ice machine dispensing perfect little nuggets?
It’s funny how a text about something as small as a shower tip brings back all those details.
Advice from our hospital experience
These tips and tricks of hospital stays are not only for those with a bleeding disorder; they’re for everyone, including parents of the patients. Here are some of my favorites.
- Have factor or other medication on hand. Many hospitals don’t carry specialty drugs needed by people with rare disorders. Check with your doctor to ensure the hospital has the necessary medications.
- Bring your favorite blanket or stuffed toy. These are small touches, but they carry the familiar smells and comforts of home.
- Take your favorite sippy cup or tumbler. Nothing is better than pouring a soda into your favorite cup filled with ice nuggets.
- Parents, bring your pillow! Hospital chairs and recliners are often less than comfortable, and having your pillow can make all the difference for long nights.
- Bring snacks and single-serve microwaveable meals. Eating from the hospital cafeteria can quickly get expensive. Having your own stash helps keep nourishment convenient and affordable.
Though it’s been years, the routines, faces, and sounds of the hospital remain a part of me, ingrained in my heart and mind like familiar, weathered pages of a well-loved book. The anxiety, exhaustion, and resilience of those experiences shaped me, each experience teaching me patience, strength, and compassion that reaches beyond my own family’s journey. I carry these tucked-away memories as an offering of support to those who are walking a similar path.
I also remember the words of support given to me so many years ago by a mom whose son has hemophilia. She shared her vast knowledge of the disease with me through small bits of advice and wisdom. Her words weren’t grand gestures, but simple, practical tips she’d learned from years of navigating this same road. Every piece of advice she offered, from identifying bleeds to easing the pain of needle sticks, held the warmth and understanding only another mother in the trenches could give.
As I sent the text to my friend, I hoped that my years of experience were helpful. Sharing what I learned is my way of honoring the many families who nurtured me along the way.
You, my friend, are not alone.
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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