Hayden’s Story

These past few months have been crazy and hard to keep my head up. Between Hayden getting a 2 week cold, me getting a 2 week cold and the fact that Hayden had an MRI coming up, it just hung over my head, it was a lot to deal with. The colds came and went, but the MRI was just around the corner and now here we are, about to have him sedated to have this procedure done. To completely understand, I’m going to take it back a bit.

A couple months ago, we started noticing Hayden making some odd head movements that seemed involuntary. It started getting worse so I called in to his pediatrician and they said they would get back to me. Hours later, still no word.

I text my aunt, who is a Nurse Practitioner and she told me to take him to urgent care. I did the whole save your spot online and explained in comments what was going on. Almost immediately I got a call from the UC doctor, who told me to take him straight to the ER and so we went.

We waited for what seemed like hours before we finally got to see a doctor, luckily my husband had caught the head movements on video while we were in the waiting room. The doctor didn’t seem to understand why we were even there, even after watching the video. He acted like it was no big deal, even though he admitted he had never seen anything like it. He told us the only thing we could do was an MRI and since Hayden is so young, he would have to be put out and have a pediatric doctor with him the entire time and they didn’t have the staff or time to do that. He said he would send a referral to a pediatric neurologist.

By this point I was beyond upset and worried. Meanwhile, our pediatrician called back and wanted to see him in the office the following day. We took him in and she was able to see it in person, she too admitted she had never seen anything like it and that the MRI was a good idea. She also said it could just be a tick that he’d eventually outgrow.

This all happened in September, they were not able to get him scheduled for an MRI until January. His head movements did not go away and he started to develop other head movements along with what was already going on.

So again, here we are, the day I’m having my 1 1/2 year old sedated for an MRI. It’s so scary to me 1. That he has to be put out and 2. The results. I see terrible stories all the time on social media and these parents seem so strong. I just hope whatever happens, I can be strong enough for Hayden.

I know there is nothing we know for sure and I’m probably just playing into my anxiety, but I would like to ask everyone for prayers and to keep our little man in your thoughts today.

*UPDATE*

Hayden saw the neurologist yesterday, but the doctor decided he didn’t need an MRI based on what he saw. So again, nothing was done. Three months of waiting for nothing. I called our pediatrician shortly after the appointment to request that Hayden at least have blood work done, but was told there was nothing a blood test would show for something like this and if we did want blood work done, it would have to be outpatient. Which is basically threatening me with having to pay out of pocket, we don’t care, we just want to make sure our baby is ok.

It’s so hard to decide what to do. Do I trust all of these doctors that originally told me they had never seen anything like this and that Hayden needed an MRI? Or do I fight to have more tests ran?

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