10/14/2024
Wesley Update:
This is a hard post. Last week was definitely the hardest week of my life.
Wesley was a little under the weather on Monday with a runny nose and a slight 100Β° fever. We have infused when he was in a similar state so we didn't think to much of it other than just keep an eye out for reactions such as a rash.
We had about 10 minutes left in the infusion. Wesley was watching his favorite movie on the floor and all of a sudden he fell backwards. He was unresponsive and his face and lips were completely blue. His eyes were rolling back and his little body was frozen.
His nurse jumped in and said she thought it was a seizure, he was burning up. So most likely a febrile siezure. Dad put ice on his back and I called 911 while his nurse attended to him. It took him a few minutes to come to.
It was the absolute worst thing to witness as a parent. I thought that I was going to lose him right there and my body and mind were in complete shock the entire way to the hospital in the ambulance, in the hospital and honestly even 24 hours after. I couldn't even talk about it because I knew I would lose it and I wanted to stay "strong" for Wesley.
He is ok now. β€οΈ
But it was a rough week, he ended up becoming much more sick the following day, with higher fevers, a bad cough, runny nose and fatigue. It took the entire week to get his fever and cough under control.
I would be lying if I didn't say I was terrified for his infusion this week. I would be lying if I said I'm ok right now. I would also be lying if I said I ever wanted to spend a second away from him again, (when I never really did to begin with).
I know being a parent to a medically complex/terminal child is hard but this really snapped me into reality and I've been struggling, I just love him more than anything in this world and wish I had more time.
Wesley's infusion will be Wednesday this week, so if you can take a moment to say a prayer or give him good energy it would be greatly appreciated.
We love you more than anything, little boy. β€οΈ