Thursday, February 03, 2011

So When You Bitch About Being Content....

Didn't post my second post yesterday because it ended up being a kind of rough day. Things started off well. We had a park day. When we arrived, there were a ton of kids. After being freakishly social awkward home schoolers, the beasties meandered off into different directions. I kept an eye on them and all seemed well. After about an hour, Umberto sat down with the grown ups, complaining that he had a headache. I thought it was allergies and worried a bit that he wasn't getting along with the other boys. After a half hour of looking utterly miserable, I told him he could lay down in the van if wanted. He ran off to lay down.

I let the girls play for about an hour more while I soaked up some mama time. Finally, we left. As I was loading girl beasties into the car, I noticed Umberto was acting off. I asked him numerous times what was wrong. I was a little paranoid as the night before, I woke up because Piper yelled out "Umberto stop it!" and I thought maybe Umberto was having a seizure but I hadn't heard anything after this and Piper does talk in her sleep. I was telling my friend that I was worried that Umberto was having seizures and not telling us. He insisted he was fine. I strapped Baby Beastie into her cars eat, got into the front, and looked in the rear view mirror to ask Umberto one more time if he was okay. He snapped "I'm fine!" and then fell into a seizure. As  a bit of comic relief I actually thought "Damn it you're not fine!" I hopped out, my stomach twisted, and held him through the longest two minutes ever. Baby Beastie was SCREAMING the whole time. Camille and Piper had never seen Umberto have a seizure so they were scared and curious. They kept asking if Umberto was alright. The whole time I was thinking about what the hell I was going to do if Umberto didn't come out in two minutes. I had no cell phone and everyone was gone from the park. Finally, the seizure died down, and he was just twitching a bit.

I noticed a friend turning around on the rise that comes up above the parking lot. I tried to wave her down but I was holding Umberto up as he was still very floppy. He finally came back to us, and I asked him his name and some other questions. He was very groggy and slurred his answers before pretty much passing out. Once I was sure he was okay, I started the drive home. And ended up sobbing almost the whole way home.

This was the scenario I've been dreading and hoping would never happen: being alone, out, with Umberto seizing. Couple this with a whole year passing between the last seizure and this one, and well it was pretty horrible. I couldn't help but fear that Umberto was going to die and it freaked me out. I know he's not going to die from epilepsy but there's just that fear whenever he's in my arms, yet so far away. I find even the imagining of him not being to be too much to bear.

And then I am just worried that the meds are losing their effect. I did find out he missed a dose the night before and had missed a dose about a week ago. But regardless, it's clear that maybe things aren't getting better. The meds are working but I worry that we're not making progress towards him maybe being seizure free. However, it did motivate to contact Duke Medical Center. They have a pediatric neurological clinic that is purported to be very good. I'm hoping we'll learn more from them then we have from the neurologist he had. I know that the answers will not be fully satisfying but I am hope they'll give us a bit more information.


rhiannon said...

Can you get a cheap pre-paid cell phone? Maybe even two of them, one to leave in the van and one to keep on you? That way if he had a seizure you'd have w ay to call 911, or even just call your mom or H to get them to come help.

Ginger As in Green Tea... said...

Oh we're getting a second prepaid phone today:) I wont' be going out without one again.

S said...

So scary Ginger. (((hugs)))