Another Setback

My grandson finds himself back in the ICU as of Monday. They are ordering another battery of tests. Nothing with him has changed, and that is the issue that the neurologists have. After clearing it with mom, I can share more with you about him.

His name is pronounced Ryan. His mother spelled it Rion. I know, right? He is active and sharp. At six years old, he is a good ice skater and plays hockey. He tests above grade level in every category. Or he did, before he got this infection.

I last saw him on October 10. Two days later, on October 12, he came home tired and went to bed early. He didn’t wake up for school on Thursday, so his mother went to check on him and found him covered in vomit. When she put him in the shower to clean him up, he had a seizure. She took him to the ED, and he was soon transferred to the ICU.

He didn’t wake up until October 20. He showed some deficits in movement and facial expression. That has since improved. He was soon transferred out of the ICU. The problem is that he hasn’t changed since. He is still in there- when I tell the fart jokes that little boys so often find funny, he laughs. When you tell him you are there for him and will have his back, he responds with tears. If you yawn, he yawns and stretches, too. He looks you in the eye, his eyes follow motion. But that is all he does. He won’t talk, won’t blink on command. Can’t talk, can’t swallow. Nothing voluntary. At least he still smiles when Granpa walks into the room.

That is why neuro is worried. The PET scan came back and showed abnormalities. The different parts of his brain don’t appear to be communicating with each other. They are saying that every day that goes by without any change, the chances of his deficits being permanent increase. Imagine what hell that is. His body is healthy. It appears as though he is fully aware and conscious. He will be trapped in his body, unable to communicate, to move, to do anything for 60, 70, or more years.

It tears me up inside to think that I may never get to teach him to fish. He will never again ask for horsey rides on my knee, that I will never again hear him say, “I love you grandpa.” What pure hell that little boy is going through. He is a prisoner in his own body, a fate more horrible than death. I really hope that the neurologist is mistaken, but every day that goes by with no progress is not comforting.

There is discussion of sending him to a larger hospital that is better equipped to handle more advanced neurological issues like this. I don’t know where that will lead or how it will happen.

I have set up a category so you can follow his story. A friend of the family has set up a GoFundMe if anyone is interested. All of the funds will go to my daughter to help with copays, bills, etc.