Wednesday, July 15, 2009
Will you pray for Finley?
After Finley's stroke, I was introduced to the blog world. At first it was a way to update family and friends, but then it became so much more. Soon, it became a place for me to get it all out and "say" what I was feeling or thinking at that moment. It is funny to look back really because I can't tell you how many "posts" I started and even finished, only to delete them shortly after. It was therapy enough to put it into words; I didn't need anyone to read them. Now, however, I am asking all of the blogosphere (is that a word?) to chime in and help me out.
This past weekend, Saturday to be exact, Finley had his first seizure since birth. We were at the ballpark for J.T.'s baseball game and Finley was sitting in his stroller. He just zoned out. His eyes glazed over, he began thrusting his tongue and drool was pouring out of his mouth as if someone turned the faucet on. The nurse in me began to time the "episode" and called the pediatrician to see what she thought we should do. However, the mother in me was terrified... especially because my sister-in-law was witnessing it with me and she looked like she may pass out/ freak out. (fyi: she is the calm one) Our pediatrician said to go to the ER, so we headed to Children's Hospital up the road. Once we were there, I will spare you all of the gory details, Finn had another "episode" and the Pediatric Intensivist felt very strongly that it was a seizure. HOURS later, we were sent home with an emergency medication in the event of another seizure.... and here we are.
So here are my questions and a little bit of information:
1. Have you ever used the Diastat Acudial on your child during a seizure? How do you think it worked? Were there any side effects associated with the medication that you felt were truly the medication and not the seizure itself?
2. If your child wears a medical alert bracelet, where did you purchase it? Are you satisfied with it? Are there any that aren't worth the money/ companies that I should stay away from?
This Monday, July 20th, we are having another EEG. He can't have any sugar or caffeine starting Sunday, no nap the day of the EEG, and needs to take a nap after the EEG is started. Okay, sure! Finley has had two EEG's in his life, but he was 2 days (inpatient) and 2 weeks (outpatient) old at the time. I have no idea how to do this. His EEG is at 2 p.m., soooo my plan is: Take J.T. to preschool in the morning and then take Finley to a 2nd breakfast very close to the hospital. I am going to park my car at the hospital and we will walk to our gym across the street where I will let Finley play until lunch. We'll have lunch at the cafe in the gym and then get on our swimsuits and swim for a while since he loves the water and it wears him out. Then, we will grab a little snack, and walk back across the street to the hospital where he will, hopefully, be ready to zonk out. I am scared to put him in the car because it is "insta-nap" for him. (I tend to have great ideas, but when it comes time to implement them, there are usually some holes the first time around... and I really don't want this to be one of those times!) So....
1. What would you do to keep your child awake? Keep your child happy?
2. How do you get a child to sleep with a zillion electrodes on his head and in a strange place?
3. Any experiences with this that may help me out?
A few days after the EEG, we will see our neurologist:
1. Has/ does your child take a daily anti-convulsant? Which one? Are you satisfied with the results?
2. What questions do I need to ask?
Oh yeah, just one more I think: How long does it take your child/ family member to recover after having a seizure? (It took Finley the better part of 2 hours to get back to normal.... and he slept the majority of the day in between.)
Okay, okay I'm not really done :)
Do you have any advice? I am so overwhelmed right now. I feel like our way of doing things has changed so much in an instant. I feel like I did immediately after the stroke. I am scared to turn my back on the boys in the bathtub for a second (more than usual), I worry every time we leave the house if I have his emergency med, if we will be able to get to the hospital in time if he has a prolonged seizure. Every time the phone rings when he's at preschool, I wonder if they are calling to tell me something has happened. I know that things could be a lot worse, but I guess whenever our normal changes, I have this period of adjusting that is very anxiety-ridden.
I truly appreciate your input.