I've only been home from Satcher's latest hospital admission for a few hours, and I am still feeling every single emotion. Grateful. Angry. Confused. Flabbergasted. And, maybe surprisingly, more confident than I've ever been.
Before I say anything else, I want to be really clear about something. This is not a knock on the nurses or the doctors. It's not a knock on the incredible advancements we've made in medicine, the knowledge we have now, or what can be learned from today's technology, labs, and resources. I'm grateful for all of it.
This is about the system. Because it is broken.
What actually happened
We checked in for a 48-hour EEG study. Let that sink in for a second. A child with a very rare disease, and concerns about seizures. That's a scary place to be as a parent.
The room wasn't ready. We waited about two hours just to get his leads set up.
We had prepared ourselves before the trip that a neurologist probably wouldn't come see us, and that they'd follow up afterward. What we did get was a pediatric resident, because someone has to order rescue meds in case he has a seizure. Period.
Getting the leads on was scary and hard. And the techs who came in to do it didn't know a single thing about the child in front of them. They were essentially going in blind, doing the very best they could, sometimes in really awkward situations where parents aren't helping at all. I don't envy that job.
Then there was the nurse and the nurse tech. The EMU team and the EEG techs. And here's what struck me most: nobody was working together as a team.
Each person has a job, and they do it. They do it to the best of their ability, I truly believe that. But there's no communication between them. His leads would come off, and I would be the one to notice. Nobody even acknowledged it.
When we checked out, not a single doctor spoke to us. other than to say, "Hey, we're the pediatric team. Neurology will follow up next week." No education. No recommendations. No comfort. No hope.
We checked into a hospital to find out whether our child is having seizures, and nobody was going to sit down and tell us what was going on.
That is just wild to me.
And then there was the food
Don't even get me started on the menu. But I'm going to anyway.
Breakfast on Tuesdays: cheesy tater tots with sausage and queso. Wednesdays: fried chicken. Order any time of day: chocolate pudding with gummy worms ("dirt and worms").
I am not making any of this up.
This is a hospital. A place where sick children are supposed to heal. Nutrition is the key to wellness.
What was missing
It was itchy and sterile and bright. And not a single effort was made to educate us, to comfort us, to empower us, or to give us any hope that things were moving in a good direction. Really and truly, very few efforts were made.
The nurses were wonderful about making sure Satcher was happy while he was there, and I'm thankful for that. The peds team was kind and passionate about their work. Skilled no doubt. The techs were hard working and patient. But not one piece of advice was given about his overall wellness. Not one.
It's not a system that has the patient at the heart of what it's doing anymore. It's a system of tasks.
It is everything I'm against.
The conversations that stuck with me
I did have some really interesting conversations during our stay, with a first-year resident and with one of the nurses, about what I'm working toward and where I'm headed and even a little about where we have been. And both of them said some version of, "This is a great path forward. Keep up the good work, Mama.”
I'll shamelessly admit, I love it when they assume I'm a doctor or part of the medical field and love it even more when they are shocked to find out I am not. And I very proudly get to tell them that Satcher has been my greatest teacher.
Those conversations validated everything about my next steps and my goals to help other families.
But they also kind of broke my heart. Because so few people feel empowered to advocate for their own health, or their child's health. I don't think most of us feel bold enough to do that, and honestly, I understand why.
It's scary to go against your doctor. It's scary to stand up and say, "No, we're not continuing this EEG. This is not in the best interest of his health." But that's exactly what we did.
We stopped the EEG early because of what it was doing to Satcher. It was taking a real toll on his overall happiness. He was withholding urine. His energy was dropping. We weren't willing to keep trading his well-being for a few more hours of data, and it wasn't a decision we made lightly.
And I want to be fair here. Those decisions should come with knowledge. Doctors can't just do whatever a parent says in an emotional moment. But advocacy and knowledge aren't opposites. That's the whole point. The more you understand, the better questions you ask, and the better partner you become in your child's care.
I know how scary this is…
It's scary to challenge the professionals. It's scary to question a system that was built to heal. These are people who spent years in school. They have the degrees, the white coats, the machines and the lab results. And most of us were raised to believe that they know best.
So going against the grain, or even letting yourself consider possibilities outside the norm, can feel terrifying. I get it. I really do.
You wonder if you're being foolish. You worry about what your doctors will think, or your family. You question whether you even know enough to ask.
But looking beyond Western medicine doesn't mean throwing out everything it has to offer. We never did. It means being willing to ask more questions. It means looking at nutrition, lifestyle, and the body as a whole system, and at approaches that haven't made it into the standard playbook yet. It means doing the research, weighing the evidence honestly, and making decisions with your eyes wide open.
That kind of thinking takes courage. And you don't have to do it alone.
Why hospice was the right choice
This visit made me more confident than ever that choosing hospice for Satcher back in 2021 was the best choice we could have made.
At that time, we were checking in and out of the hospital every other week, and very little was being done. I really believe that cycle contributed to how quickly he was regressing.
Does that mean we'll never check into a hospital again? Absolutely not. There is a time and a place for hospital care, and we'll use it when he needs it.
But choosing a wellness plan for him, one that centers his happiness and keeps searching for answers that Western medicine, for all its advancements, just isn't set up to look for, changed everything for us.
Where I go from here
I am so proud of the progress Satcher has made. I'm grateful for the knowledge, the people, the places, and every single person who was placed in our path and helped us get to where we are today.
And I walked out of that hospital more dedicated than ever to help as many families as I can. To give people the tools and the education to ask the right questions, seek the right solutions, and feel confident advocating for themselves and the people they love.
Because everyone deserves the chance to live their happiest, healthiest, most hope-filled life.
If you've ever walked out of an appointment or a hospital stay feeling unheard, I'd love to hear from you. You're not alone in that.
Heal well, hope big, and be happy,
Paige
