My Big Fat Life – ……

In Uncategorized on August 19, 2014 at 10:55 pm

I have something to share, but I am going to keep it as brief as possible. As much I need to get the words out, I am simply still not in a place to put all the words together just yet.

A few days ago I was on the road taking my adult son home. It was a long road trip. Since Gabriel has a birthday coming up, we also stopped by the cemetery to lay a flower on the grave of his identical twin, Isaac. I haven’t been there in sometime, and I knew we wouldn’t be there before the birthday, so we decided to make the stop while we were in the area. We stopped, dropped my eldest son at his house, and headed home. On the way home Gabriel fell asleep, as did most of the boys in the van.

I was literally moments away from home when I looked over at Gabriel who was sitting in the front passenger side of the van. He is always trying to slide down when he falls asleep, and I freak out over the seatbelt not sitting correctly across the chest, so I am known to keep an eye on who is sitting in the front. Only this time when I looked over what I saw was Gabriel’s chest pushed out, his eyes rolled back and he was shaking. Yes, I freaked the f*** out.

I think I pulled to the center lane, I can’t remember. I just know I stopped the van immediately and started screaming for help. I thought he was having a heart attack. I have never seen a seizure like that before, and I really thought I was watching my son die. I remember when I ran to his side of the van, and opened the door, there was drool on his face. I felt completely out of control to help my child. At one point cars stopped everywhere, people got out to help and yet the only other thing I can remember is looking over and seeing someone start CPR on him. Have you ever seen someone start CPR on your child? I seriously hope not. It was without a doubt one of the worse things I have witnessed happening to one of my children. I don’t know if he was breathing or not; I am not sure what happened in that moment. It’s all still a blur, but I remember seeing that and thinking at that moment that my son was not alive, and laying on the ground.

A woman and her husband pulled over to help. I was too hysterical to follow the ambulance, so she drove me while her husband followed behind. Not knowing if Gabriel was alive, or what was happening, I remember being afraid to walk up to the ER once we got there, but s we arrived, I saw them wheel Gabriel in. I thought I saw his head up, but I was too scared to hope. As it turns out (Gabriel has since told me) he doesn’t recall a thing. He said he remembers falling asleep in the van, but waking up in the ambulance. He wasn’t sure if we were in an accident, or where we were.

In the ER the Drs couldn’t determine what caused his seizure, and assured me that he was seemingly okay at the time. His heart rate was elevated, but that was all that seemed off. Of course I wasn’t really wanting to leave until they ran every test under the sun, but they sent me home with some medication I have to give him if it happens again with a plan to call 911 immediately. I seriously pray, hope, want to believe, I never have to see my child go through that again.

His rheumatologist called me the following day to check in on him; which I thought was really sweet. I explained to him what happened, and he assured me it wasn’t the colchicine. It was the only thing I could think of that could have caused it, because he took it an hour and half prior, and nothing else has changed in his life. He did suggest that since Gabriel has been having such a hard time with the GI side of it, to drop the dose to one pill a day, instead of the one pill twice a day. I expressed my concern that the cardiologist told me that if Gabriel had ever had another flare, they would do surgery immediately to remove the pericardium sac. The rheumatologist assured me that since we can seemingly control it with the colchicine, that if he flared again, we would simply bump the medication back up and not go right to surgery. So I guess that is great news in the midst.

The pediatricians office called me today, and they have ordered an MRI and EEG. I’m supposed to hear from them to schedule. I also place da call to the cardiologist, as someone suggested it could be related. He didn’t get back to me today, so I am hoping to hear back at least tomorrow.

I’ll update more when I find out as we go, but for now that is all I can share.


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