Medical Issues, Opsoclonus Myoclonus Syndrome

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a lot of attention to us” moment and “oh crap.” Nurses were moving quickly. We were seeing attendings and not interns or residents. My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay, and they were overly attentive.

 

All Eyes Were On H

 

Without much of a blink, I had the ER attending, the neuro attending, the peds attending, and there was one other one, but I could not think of who that person was. They got him in a gown. I blinked, and the next thing I knew, they were putting in an IV, drawing vials of blood, and testing his urine. It all happened so fast.

 

Explaining the Last 2 ER Visits

 

When I talked to the attendings, I explained that we had just been to Vandy and what they had said. I told them I might be overly cautious, but it seemed H was getting worse. All I wanted was two doctors, two different hospitals, and two different states telling me the same thing. Once that was done, I would be good to go. The last thing I wanted to do was to stay.

 

Dancing Eyes

 

I blinked again, and when I looked up, H’s eyes were dancing all over his head. It reminded me of one of those reptiles with a third eyelid. Quickly, I got up and hung my head out the door for the attending. I stood, where my face was not visible to H. Before that moment, I was cool as a cucumber the whole time. Sadly, when that third eyelid thing had to be fixed, that scared me. That’s when things started moving a bit faster.

 

Not a Normal Mama

 

I am not the type of mama who always is at the hospital or doctor’s office for every snot rocket, complaint, bent finger or toe, or even blood gushing. I do not subscribe to that in my life. If mama is quiet and the kid is quiet, things can get done and assessed. I told these people that. I apologized for even taking their time because I was sure that everyone would agree.

 

They disagreed.

 

Not even in the slightest.

 

A 6-Day Stay

 

My previously healthy 3-year-old was poked, prodded, sedated, and infused. I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by doctors, residents, interns, students, and nurses. There was not one person who would give me a straight answer. I finally cornered one of the doctors, and I told her I was a nice person. I tolerate it a lot. I am also a forthright person, and I do not beat around the bush. The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.

 

I understand that they do not have all the test results. I know that they do not know, for sure, what this is. They know what tests they are running, why the people are running them, and what they are ruling out. That is the stuff I want to know. I will not lose my cool. There will not be a time when I will panic, faint, cry, or scream. My job is to be a student of whatever is going on.

 

Student Doctor

 

One sweet little student doctor, who looked like my son’s age, stepped out of his box. He got down on H’s level. This sweet man played with him, connected with him, and was genuinely concerned about him and me. There were days when he would stop by and ask random questions because he was going home and researching. Out of his graciousness, he made me a list of all the tests. Which tests were pending and which had results (and he gave me the results).

 

Also, he took the extra time to write down what disease each test was for, what was ruled out, and what they were looking for within the tests. That list became gold to me. Every time a nurse came in, she would check to see if a specific result had come in. This is what I needed. The list calmed my soul, and I felt empowered and in the loop.

 

The Hospitalist

 

There was another doctor; she was a pediatrician and was the hospitalist for the week. She slammed me between the eyes. This doctor said that he would not get better and that it was an autoimmune disease. They could not pin it down, but the fact that every single day, he was getting worse and much weaker. She said that I needed to see the gravity of the situation. I need to make adjustments at home. I needed to set up therapy. They wanted him in Frazier Rehab for an indefinite amount of time. I was going to be the one who had to feed him. We had to get him fitted for a wheelchair. What was happening was our new life, and I needed to prepare myself.

 

Time for a Meltdown

 

I believe that conversation was the first time I truly had a meltdown. Amazingly, I did not do so in front of all the doctors. I waited until they left. Before my moment, I got my son watching a movie. Then, I stepped into the bathroom and called my sister, H’s grandma. That is when I lost my composure. I could hear H in the other room sweetly saying, “mama, don’t cry. Come out of the bathroom and don’t cry.” I came out. Then I washed my face. Next, we watched Cars for the thousandth time.

 

Choosing Joy

 

I purposed not to let this dictate his life or mine. Adjustments? Fine. I can do that. Therapy? Fine. I can do that. When the doctors came to do rounds again, there were about 12. All of them were timid around me. They would not look me in the eye. I guess they thought I was going to break down. There was a moment, and now my moment was over. I told them that even in times like this, I choose joy. According to God, this would not defeat us. OMS was just a part of our story.

 

I explained that these doctors would see something similar in their future. When they do, they will remember H. Hopefully, they will know what tests to run and what to look for within his body. Also, to realize that God will be glorified. The tone in the room changed. They began to tell me they were praying for us and encouraging me, saying that God can still do miracles.

 

Next, we meet our Neurologist team. 

 

 

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