As a mother, there are few things more rewarding than watching your child bounce back to their usual, energetic self after a rough patch. Today, my little one is back to his ornery, spirited self, and seeing him like this fills my heart with so much relief. He looks so much better now that he’s had a full night of rest and oxygen therapy. I’ve been giving him his asthma treatment every 4-6 hours, as needed, but when he’s having off days like yesterday, we make sure to administer it consistently. That routine seems to really help him get through the tougher moments.
Raising a baby with lung disease is a constant challenge. Every little change in his environment can throw him off—something as seemingly harmless as the weather turning can make a huge difference for him. I’ve learned that even something as simple as a dusty air conditioner filter can trigger issues, something most people wouldn’t even think about. When these things happen, I feel an overwhelming sense of responsibility to do everything I can to control his environment and help him breathe easier.
So today, I’ve been focused on making sure everything is just right. I talked with his dad about the plan, and we decided to tackle everything we can. I’ve cleaned out the air filter and checked the door, making sure there are no hidden issues. I’m also running the Frida air purifier in his room, which will likely stay on through the night. It’s a small thing, but it brings me peace of mind knowing that we’re doing everything possible to keep the air clean and safe for him. I’ve even changed the water in his main oxygen tank just to be extra cautious.
It’s the little things like this that make me feel like I’m taking control of the situation. But there’s also a side to this that’s frustrating beyond words. Every time we’ve had to go to the emergency room, they hook him up, monitor him for a few hours, run a few scans, and then send us home with the advice to keep our next appointment with his neurologist. But frankly, I’m getting tired of the same old routine. The last appointment we had with his neurologist was a joke, and I don’t want to go through the same motions again. This time, I’ve decided that I need to be the “difficult parent” to ensure that he gets the care he actually needs. I’m not going to accept a half-hearted evaluation anymore. I’ve realized that if I don’t stand firm, we’ll end up right back where we started—wasting more time on tests and scans that don’t actually address his needs.
It’s incredibly frustrating how slow the medical care system can be, especially when it comes to our state’s healthcare services. It feels like we’re constantly going around in circles, and each time, I have to push even harder to make sure he gets the right treatment. I’m determined not to let this cycle repeat itself again.
I’ve also been thinking about how his oxygen needs may vary depending on the weather. With the fluctuating temperatures and unpredictable conditions, I wonder if he needs intermittent oxygen throughout the day, especially on days when the weather is particularly harsh. It’s a theory I have, and I’m considering talking to his doctor about it during our next visit. We’ve tried adjusting his oxygen before, but I think I need to bring it up again, as the weather seems to have a significant impact on how well he’s breathing.
What I’ve learned through all of this is that I have to be vigilant. I can’t afford to overlook anything. Every detail matters, and every change, no matter how small, can make a big difference in his health. I’m his advocate, and I have to be his voice when the medical system fails to provide the care he needs. Sometimes, that means challenging doctors, pushing for more tests, and not accepting “good enough” when it comes to his health.
Watching him struggle to breathe, knowing that we’re doing everything we can but still facing so many hurdles, is hard. But seeing him bounce back, even just a little bit, reminds me that we’re doing the right things. He is a fighter, and so am I. Every small step forward, every bit of progress, gives me hope.
It’s not easy to be a parent in these situations, and there’s a constant emotional toll that comes with the uncertainty. But as long as there’s hope, I will keep fighting for him. I will keep making sure he gets the oxygen he needs, the right treatments, and the best possible care. And most importantly, I will always be there for him—every step of the way.
