Life can really knock you down, huh? It’s like wave after wave, just when you think you can breathe, here comes another one. And let’s be real – dealing with doctor’s offices doesn’t always make it easier. It feels like they’re full of excuses, passing the buck when something goes wrong instead of just fixing it. And somehow, it ends up being on us to chase them down for what they should’ve done right in the first place. Ugh.
So, for the first time since Zayden came home, a doctor actually reached out to me directly on MyChart. You’d think I’d be thrilled, right? Not so fast. He brought up an equipment request, but also managed to slip in a little backhanded compliment. He basically said, “Hey, great job advocating for Zayden, but maybe chill with the impatience and don’t disrespect my staff, okay?” Umm, excuse me? Let’s just say my first reaction wasn’t exactly PG. Any parent or caregiver fighting tooth and nail for services, supplies, or care knows that frustration all too well, am I right?
Once I got all the shouting out of my system and calmed down, I replied to his message. I thanked him (because, you know, being polite and all), answered his question about the equipment, and then addressed his little criticism. I gave him a bit of his own medicine – a compliment with some constructive feedback. I told him my frustration came from the constant roadblocks we hit between patients and doctors, especially when his staff had dropped the ball repeatedly for over a month. Fair, right?
To put this in perspective, we’ve been trying for 10 months to get a bathing system Zayden can actually use. His muscle tone makes regular baths or showers next to impossible. Picture this: holding a 25-pound kid while keeping his head and trachea dry, scrubbing him, soaping him up, rinsing him – all at once. Oh, and doing that multiple times a day. Exhausting doesn’t even cover it. And the kicker? This all could’ve been sorted out months ago if the first DME company or any of his doctors had just been on top of new devices. Now we’re with a new DME company that actually knows what they’re doing, but we’re stuck waiting for two signatures – a prescription and a letter of medical necessity. Without those, we’re at square one, and guess who gets stuck dealing with the fallout? Yep, caregivers like me.
This time around, the new DME reps tried nine times – yes, nine – to get the signatures. Then I swooped in with three more attempts, and only after my so-called “unsavory behavior” did the doctor finally pay attention. And guess what? Problem solved. I told him plain and simple: if his staff had handled those signatures properly the first time, I wouldn’t have needed to step in or lose my cool. Honestly, I think my frustration was totally justified.
Here’s the thing: communication is a two-way street, right? That applies to everything – including healthcare. When it’s one-sided, and you’re hitting roadblock after roadblock, it’s beyond frustrating. And when it delays the care your loved one desperately needs, it’s just plain maddening. No wonder patience wears thin.
For families like ours, teamwork isn’t optional – it’s a lifeline. Caregivers, doctors, DME providers, insurance companies – everyone has to work together. But when one piece of the puzzle isn’t pulling its weight, it throws everything off. And guess who’s left trying to fix the mess? Families like us.
But at the end of the day, all those headaches melt away when I look at Zayden. He amazes me every single day. Like today, when I went to lift him from his bed, and he arched his back to help me. Then he grabbed my shirt with his tiny fists and shook his head like, “Nope, not today!” For the first time, he wasn’t just limp – he was helping. And that defiant little headshake? Pure magic. It’s such a small thing for most kids, but for Zayden, it’s huge. Monumental, even.
Every little milestone he hits feels like conquering a mountain. And those moments? They’re why I keep fighting. They’re why I’ll keep pushing against a broken system to get Zayden what he needs. Because every tiny victory, no matter how small, is 100% worth it.
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