A Summer of Medical Mystery

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It’s been quiet around here. I’m sorry for that. I had fully intended to spend my summer building this blog and was looking forward to having time to really focus on it. But plans? They don’t always work out, do they?

Fun at the white water rapids of Niagara.

We returned home from our Niagara Falls adventure on Saturday, July 14. On Monday, a friend invited us to go on an adventure to the nearest “big city” that has a LEGO Store and Disney store, which we don’t have here at home. We thought it sounded fun so we all jumped in the car with her and off we went! However, my youngest was super cranky that morning. He had a bad cough and I had actually taken him to the walk in clinic when it opened at 7am to get a chest x-ray to make sure he didn’t have fluid in his lungs from swimming. His chest was clear so I figured we were fine to head off on adventure.

When we arrived at the mall, my youngest started sobbing and begging to go home. I told him to stop being dramatic, we were going to have FUN. He said he was thirsty so I went to the vending machine to get him a drink. While my back was to him I heard my friend say, “I’m calling 9-1-1.” My initial thought was, good grief! He’s just thirsty!

But then I turned around and saw that his lips were blue and he was quickly fading. He was limp and droopy but still could hear us and respond a bit. We called an ambulance and went to the ER. By the time we arrived, his color had returned to normal and he was fine.  After our arrival, he had another coughing fit and vomited. The nurses became really rude after that, telling me that he just had a stomach bug and how could I possibly have called an ambulance over a stomach bug. They would NOT LISTEN to me about the turning blue and coming very close to passing out. It was an absolute nightmare.

Sweet boy at the hospital.

My youngest has something called Chiari Malformation and it basically means his brain is a little too big for his head and a small piece of it sticks out and puts pressure on his spinal cord. I think his is about 7mm. Tiny but enough to cause problems. But the hospital would not listen and sent us home and told us to quit overreacting. I’m still sick over that.

I began making phone calls and it was a fight to get everyone to agree this was serious. Here’s the thing, he’s had this happen two other times in his life. Once at about 15 months old and again at about 2.5 years old. Now he’s five.

We’ve taken some moments to enjoy life–and ice cream.

And so our summer took a turn and we spent nearly every day at a doctor or a hospital for a test. That child has had EKGs, MRIs, MRAs, echocardiograms, ultrasounds of his arteries, x-rays, and a million exams. And so far, we still have no idea what is causing this to happen. His neurosurgeon thinks his brain is looking good, other than his Chiari Malformation getting worse. But she doesn’t think that would cause this. His cardiologist says his heart is perfect and she doesn’t think it’s causing this.

We’ve snuck in a little fun around all the doctor’s visits. Here we are at a motorcycle stunt show!

We have no idea what is happening or why. We don’t know where to go from here. We’ve lost our summer to all of this and still have no answers. We should soon be going to the children’s hospital to get his neuro and cardiologist together to discuss things together.  In the mean time, I cry a lot. A LOT.

My sweet boy doing his math work. See the laundry in the background? This post is as real life as it gets.

I like to only share the happy and the fun here. But honestly, I figure that maybe somebody out there will read this and recognize something that might lead us to an answer. It’s worth a shot.

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