WARNING: This story is graphic and heartbreaking to most parents. It wasn't easy to write and it's not easy to read. I'll understand if you move on. :)
Twelve years ago on 9/15, my 5 month old son was having intractable seizures. Major, whole-body-jerking seizures. One of scariest things I've ever seen. I called my friend, the NICU nurse and off to the local ER we went. Brennan and I had been at that ER the night before because he wasn't acting "right". I just did not know what I was seeing~small, barely detectable seizures coming at a constant rate. He looked like he was smiling except for the drool. The doctor who checked him out that night treated me like a first time paranoid parent. He watched him for an hour off and on and sent us home. Bad decision, Doctor. Bad all around.
I spent the night wondering what was wrong with my baby. I know he was "off". He wasn't eating. (Duh, how can one suck during successive seizures). He wasn't sleeping though he seemed to doze. I dozed off at about 5am and when I woke up at 8am, I realized Brennan was still very, very off. His diaper wasn't wet. He still wasn't making eye contact. I felt foreboding music fill my head(seriously). Called my friend, jumped in the van and off we went.
He began the major seizures on the way. The local ER was in a word, clueless. They could not find a vein until my friend offered her skill. This kid was seizing his brains out, almost literally. I was standing by, praying that my child would be OK and feeling ill with a headache beginning to inch up from the back of my neck.
They found a vein in his head(yes his head). Poor baby was so out of it, he wasn't feeling anything. They got some ativan(sedative used as an anti-seizure med) on board, stopping the seizures for the moment. Next, was the ambulance ride to Children's Hospital, which actually knew what to do with a 5 month old. I had to ride in the front and couldn't really see Brennie in the back. I was scared witless and babbled to the driver. Some moronic people did not pull over even though the siren was on LOUD and the lights were flashing. If I could have moved things with my mind, the Asian couple in the U District would STILL be orbiting the moon.(I make mention they were Asian not out of prejudice but out of detail. This is how it plays in my head. This is how it has played in my head a zillion times. They were an elderly Asian couple who were confused by the ambulance in the intersection and the traffic.)
This entire time I was almost outside of my own head. It's happening. I feel it happening. My eyes see it happening. My brain kept screaming, "This is NOT happening!!" Almost as if I was in 2 dimensions at the same time. Or as if part of my brain was floating above myself, watching it all from above. Surreal can't even begin to describe how I felt.
The ambulance backed into Children's trauma bay. Brennan had started seizing again and they rushed him into the crash room. I was asked again about how my son came to be seizing at Children's. I told them basically what I have described here. The social worker asked me if I had been okay when they had sent us home the night before from the local ER. I vehemently shook my head. I told them I felt something had been off about Brennan for months, mostly the past few weeks. I knew he was off the past 18 hours. I went over this story in more detail several times. George(kid's dad) and my friend were there. They watched as the 7 doctors worked on Brennan. I was out of the way in a rocking chair praying my heart out. I had a really bad headache by now, but I ignored it.
September 15, 1995~the day my world broke into pieces, I just didn't know it yet.
They did a cut-down on Brennan's chest and poured 9 medications into him(seriously 9). He had to be placed on a respirator because the meds caused him to be unable to breath on his own. He lay on the big gurney, with several iv's going in, hooked to a respirator, as unconscious as one can be and still be alive. He looked dead. To me, he looked dead. That is how I remember it. It is still a crystal clear image in my head. Permanently imprinted on my hippocampus for all time. May be continued another time... (This is only the beginning of 5 month journey to my angel's death. This is 10 hours of a 48 hour emergency and 7 days in the ICU....)
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