Look for this Artist: Rachel Aldous
Song titled: A Mother’s Prayer
(I found on utube)
I have become frustrated with doctors and their lack of listening skills. Adam has a thing he does with his eyes just before he seizes. He will stare a blank far off stare and his eyes will get stuck in a kind of day dream. We call them “starring spells” since, according to the neurologist, they are NOT seizures. (Lately he’s been having facial twitches as well.) These are “not seizures” either. I call them very important WARNING SIGNS. Last night thanks to the night nurse I was able to maintain my sanity because Adam was exhibiting these behaviors and I’ve been telling the doctors only to hear the response, they are not seizures.
I knew something was coming. I felt it- something was stirring in my gut mixed with anxiety. I paced like an animal-mother would near her wounded baby.
Nothing happened. I went to sleep. At 5:30am I awoke to find that Adam had begun to seize. He went into “status” until 10:00pm. Today he is in a “Pentobarb Coma”. It’s a medically induced coma to help his brain completely shut down. The hope is he will awake slowly as the meds are reduced and his brain will have rested enough to protect itself against seizures.
Now he not only has a breathing tube, feeding tube, catheter, EEG continuously recording and a pick-line; one in his arm and another iv access in his neck but he also had to get a blood transfusion.
I often say that doctors underestimate Adams “ability” to seize. I know better. When Adam’s brain begins to seize if it doesn’t get meds soon enough it’s like an angry wild fire. I know, I’ve seen it. I can’t help to wonder if the doctors would have listened to me and Adams warning signs could this have been prevented. Now the doctors have seen it for themselves. MAYBE NOW they will listen, maybe now Adam has their attention.