Yesterday began bright and early at 4:00 AM. We were scheduled to be at the hospital by 6:00 AM, and thankfully, my daughter's nurse was there to help prepare her. With her assistance, the morning was much smoother, and we managed to leave the house by 5:10 AM—right on schedule. A quick stop for gas later, we were on the highway by 5:20 AM, making great time. For once, it felt like we might actually be on time! While we always hope to be the first case of the day for procedures, it’s a bittersweet wish: being first means an early wake-up, but it also means getting it over with sooner. Just as everything seemed to be going smoothly, we hit road construction. Since I recently started working from home, I hadn't been commuting and was completely unaware of the detours. After some fumbling, I figured it out, but we still arrived about 20 minutes late.
No matter how many times I take my daughter in for a procedure, it never gets easier. Each visit fills me with anxiety, and this time was no exception. However, seeing familiar, friendly faces at the hospital does help ease the nerves. Many staff members recognize me and my daughter, greeting us with warm smiles and kindness. Still, there's always that one doctor who needs a gentle reminder—or lesson—on what works best for her care.
My daughter has a surgically implanted medi-port, which provides direct access to a vein for blood draws, IVs, transfusions, and more. It's there because IVs have always been extremely difficult to place and, when they are placed, they often fail, causing pain and bruising. Despite this, one of the anesthesiology team members insisted on placing an IV instead of using her port. I had to explain again, "She has the port because IVs simply don’t work for her. We've tried everything: sedated, conscious, intubated, hydrated, dehydrated—you name it. The port exists for this reason." Thankfully, one of his colleagues sensed my determination and spoke up: "I think we should listen to Mom and use the port." Though it was clear the first doctor didn’t fully agree, he relented. They made such a fuss, as if my daughter was the first child they'd ever seen with a port. Once that issue was settled, things went much more smoothly as we transitioned to working with her regular team of doctors.
After they took her back to begin the procedure, I found myself in the waiting room, trying to focus on work to distract myself. Then the moment I always dread happened—a doctor came out and said, "I wanted to talk to you about something." My heart dropped immediately, bracing for bad news. Thankfully, it wasn’t too serious. They simply needed to add an additional procedure while she was already in the OR, which made perfect sense. I agreed—we might as well take care of it now rather than down the line. The only downside was that it meant an overnight stay, but I was okay with that. Anything that prevents future stress is worth it.
After nine years of these hospital visits, I finally feel like we’re getting the hang of it. The battles with the medical team are fewer and far between, and more often, I hear the words, "Let’s listen to Mom." While I appreciate being heard, I don’t want to come across as overbearing—I just want to be part of the team. I’m not a medical professional, and I’d never claim to know everything, but I know my daughter better than anyone else. So when someone listens to me about her care, it truly means the world.
How have your hospital experiences been? I’d love to hear your stories. For now, we’re heading home, and I’m grateful for that. Until next time!
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