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.

Categories: My Grandson


Al · November 2, 2022 at 8:59 pm

I’m so sorry that you, your grandson and your family are going through this. I pray that your grandson has a full recovery and that better days are ahead.

Vlad · November 2, 2022 at 9:21 pm

God Lord I hope neuro is wrong.
Prayers brother…I’ve got no words that can express how much I hope he improves.

bill · November 2, 2022 at 9:24 pm

Makes me hurt inside reading this. I know who to turn to,I am saying it now.
Been through 3 of these things with family,Hurts every time.

Pray. for all who come into the circle who are about Rion.

expat · November 2, 2022 at 11:11 pm

Your post brought me to tears. I am so sorry for all of you…. and you go on the Prayer list. God’s Blessings and guidance for you and family during this time.

CJ · November 3, 2022 at 5:49 am

My Lord, this is heartbreaking. That’s almost unbelievable. I don’t know how capable a hospital he’s in, but my only advice is I’d encourage the transfer to as big a children’s hospital as they can get him in.
My firstborn had a severe stroke a few hours after birth. The complications from that have given him a laundry list of diagnoses and problems. At first I had the utmost confidence in the neurosurgeons and specialists here locally. Others encouraged me to take him to the neurologists at the major children’s hospitals (I realize now my hatred of big cities was probably mostly to blame for my hesitation.)
Anyhow, we finally did take him to Baton Rouge, and my God, the difference. Treatment options, tests, therapies, things we’d never even heard of before were being thrown at us so fast our heads spun. Why hadn’t we heard of any of this at home? We can really do that? It was the best decision we ever made for him, and he’s improved dramatically since. Will be praying even harder for little Rion. When my 6 year old bounces down the stairs here in an hour or so, I’ll hug him extra tight.

Michael · November 3, 2022 at 6:17 am

expat said it all friend. I am in prayer for all of you.

Rich · November 3, 2022 at 9:20 am

Would you mind setting up a GiveSendGo instead?

Al in moss bluff · November 3, 2022 at 10:57 am

You, Rion and related family have my continued Prayers and compassion… May God Bless and comfort you all.

Seamrog · November 3, 2022 at 3:33 pm

This is devastating to hear, and my heart goes out to you and your family – especially to Rion. I have been praying for you all since you first shared this news, and I will continue with earnest.

Red · November 3, 2022 at 7:14 pm

May the Light of the Holy Spirit surround and heal your Grandson Rion. Lord, give him what he needs to heal all injuries from this disease. Restore him.

CelticGirl424 · November 6, 2022 at 4:00 pm

My heart is broken for all of you. I wish there was something I could do other than think of you all and pray and that I had lots of money to donate.
Is this something Shriners Hospital could help with at all?
All my love to all of you.

Comments are closed.