Thursday, April 20, 2006


It has taken me quite a few days to update because we've been pretty busy with some very scary stuff. Over the weekend I intended on writing about another knitting project started (now a finished object) but that will have to wait for another day.
Sunday morning Marc, the monkey, and I headed over to grandma's for some Easter fun. The monkey hurried down into the basement to play with the drums while I put some stuff in the fridge. Less than a minute later I followed him downstairs. This is where my life fell apart. I found him in the corner of the room, face down, having a seizure. I picked him up and, remarkably, started checking his ABCs on autopilot while apparently screaming for Marc. I must have told someone to call 911 but don't remember that; I do remember yelling and possibly swearing at Marc's mom that he was having a seizure not choking. Sandy City Fire Department arrived remarkably quickly and loaded my poor unconscious little guy into the fire truck to zip off to Primary Children's. After a couple checkups, blood tests and a CT scan we were informed that a small percentage of children will have one freak seizure incident and much relieved, we were sent home.
Two blocks later in the car he had his second seizure.
This one gets him admitted to the hospital for observation and bumps him up on the schedule for an EEG and MRI in the morning. He gets a spinal tap to check for meningitis and other scary things. Six hours after his first seizure he has his third in Marc's arms, which was really upsetting to the poor guy. Doctors and nurses were in the room in mere seconds, he was given some meds to stop the seizure and knock him out, and we were sent upstairs to the Neurology ICU.
For those of you who are shaking as much as I am right now I will let you know that the story gets better from here. He was given some anti-seizure meds which prevented him from having another one that night. He fell asleep right on schedule for the EEG (you get the best readings when the patient is sleeping). He was even good when they had to move his IV twice. Test after test came back negative. It is initially easy to think "crap, all these tests and still on reason for the seizures?" But this is actually good; when they find a reason for seizures it is something really scary, like brain tumors. About 80% of tumors never have a diagnosed reason. Over 90% are freak things that never reoccur.
We were given the option of putting the monkey on long term anti-seizure medications, but those are not without their serious side effects. When a child starts having seizures, long term treatment consists of medications for between a year and a half and two years. The point of this is to keep the brain from learning how to have a seizure and getting in the habit. After two years the brain will usually have forgotten. After very careful consideration we decided not to put him on the long term drugs. While he did have three seizures rather quickly each individual seizure was only 1 to 2 minutes long, and there is not a lot of indication that he will have another one. We also live less than two miles from the hospital so we could get there quickly in an emergency. We did opt to receive several doses of medications to give him in case one came along that lasted more than three minutes. Were he to have another seizure we would probably put him on the long term meds.
While this was definitely the worst Easter I've ever had, not everything about our experiences was bad. Marc posted a message for me on Glitter and immediately there were messages and calls pouring in offering support, prayers and love. It was extremely comforting in the hospital to get online on my cell phone and read the messages people posted for me. I can not say enough about the staff at Primary Children's Medical Center. I worked in hospitals for years and was still impressed with the level of care provided and the overall kindness of everyone we met. This experience has really given me the chance to see how very loving near strangers can be, and has raised my opinion of the world in general. Thank you.


margene said...

A very scary experience indeed! Hopefully he will not need the meds (I think you did the right thing until you know he really does need them). We missed you on Tuesday (and him) and hope to see you soon. I send good thoughts and prayers for you both!

Susan said...

Oh dear, Erin.
Let us know if you need anything.

bonnie said...

wow, you guys had a very, very scary day. sounds like you have a plan though. good for most positive thoughts go to you and your little family.