Managing a Hospital Admission

Hospital stays are never easy, but when your child is only two years old and has complex needs, they become a unique test of patience, strength, and endurance. This past week, Elias has a last minute admission for intracranial pressure monitoring, a procedure that requires him to stay connected to a laptop tracking his brain activity for 48 hours. For Elias, this meant being confined to a hospital bed, something that’s hard for any toddler to understand, let alone a child with complex needs.

Confined and Restless

Despite his gross motor delay, Elias is always on the move in his own unique way. He’s curious, full of energy, and constantly exploring the world around him. So you can imagine how difficult it is to keep him still when he’s suddenly hooked up to machines and monitors. He doesn’t understand why he can’t play like he usually does, and seeing him confined like this is heartbreaking.

Other kids in the ward can walk around, play, and explore, but Elias is tethered to wires, stuck in bed, with only a few toys or videos to keep him occupied. Being non verbal it's impossible to explain why he has to stay still when he’s barely old enough to comprehend the situation makes things even harder.

The Battle for Sleep and Food

As for me, the sleep situation is…well, barely worth calling sleep. The hospital provides a chair that doubles as a bed, but it’s about as comfortable as you’d imagine. After an hour or two, your back feels like it’s been through a workout, and the constant worry about Elias means I’m only ever half-asleep, always alert for the next beep or buzz from the machines, the hourly observations from the nurses background noise to my insomnia.

Eating isn’t much easier. The focus is entirely on Elias, so finding time to eat real food seems impossible. Today, I’ve survived on two rusk biscuits and the leftovers of a tuna sandwich Elias didn’t finish. You do what you have to do, but taking care of yourself becomes a low priority in the face of all that’s going on.

Decoding the Screens: The Numbers Game

And then there’s the screen. The laptop hooked up to Elias’ brain displays numbers—so many numbers. The doctors come in and glance at them, nodding or frowning, but not saying much. So, of course, I find myself fixated on those numbers, trying to make sense of them on my own. What do they mean? Are they normal? Should I be worried?

Enter Doctor Google. Suddenly, I’m frantically typing terms into my phone, diving into medical journals and forums, trying to decode every number on the screen. Before I know it, I’ve fallen down a rabbit hole, convincing myself of the worst possible outcome. It’s maddening, and the more I read, the more anxious I become. Instead of giving me peace of mind, I’m driving myself crazy, trying to be an amateur neurologist.

The Loneliness of It All

Adding to the stress is the loneliness that comes with hospital stays. At the end of each day when my partner has to go home, that sense of isolation hits me hard. The hospital may be full of doctors and nurses, but when you’re the sole parent at your child’s bedside, it can feel incredibly lonely. You’re the one responsible for comforting your child, deciphering the machines, and dealing with all the emotions, without the reassuring presence of someone to share the load.

Holding On to Resilience

Despite the exhaustion, hunger, and endless Google searches, you find a way to keep going. As parents, we somehow summon strength in the most difficult moments. Yes, I’m tired. Yes, I’ve driven myself mad trying to understand those numbers on the screen. But all that matters is Elias getting through this safely and comfortably. So, for now, I’ll keep going, one uncomfortable night at a time, knowing that the end of this hospital stay is getting closer, and that’s what we’re holding out for.