Thursday, August 2, 2012
Follow-up and More Meds?!
I know, my post titles are very creative these days.
So, we lowered the dosage of steroids last Saturday and we've still had no seizures so today we're lowering the dose even more! I'm a little anxious, but it is exciting to get our normal Levi back. He's already been sleeping better and acting more like himself again. But his face. His face is huge. Now that he's acting more like himself he's looking less like himself and it's starting to get to me. Don't get me wrong, it's stinking adorable. But, when your baby doesn't look like your baby, it's disturbing, especially when it's because of the crazy chemicals you're pumping into his body.
Speaking of chemicals, the doctor called in yet another prescription for Levi - Topomax. Studies show that if children start to take this new drug while they're weaning off of the steroids the likelihood for recurrence of seizures drops even more. The negative thing is the side effects - drowsiness, dizziness, headaches, mental disconnect, nausea, tingling like pins and needles, and, my favorite, glaucoma. Our doctor friend told me that doctor's refer to it as Stupid-max because of the effect it has on a person. I haven't had the heart to give it to him yet. We have our follow up appointment tomorrow and I'm waiting to ask exactly how much of a difference it can make. I'd also like to be sure that the vitamin B6 isn't the cause. It is a temporary drug - he'd be on it for 4 to 5 weeks - but I just can't do it until I know exactly how necessary it is and how to handle the side-effects.
So far, I've been doing pretty well emotionally. But, I've been pretty emotional about this next appointment. First, Levi is going to need another EEG.. It was so terrible having that superglue matted in his hair. Some of it is still there even after a haircut so I'm thinking of just buzzing his hair off. But, I don't know if I can. I tear up just thinking about it. I've never been one to cry over a haircut, but combining a buzzed head with his massive face would just make him look even less like my baby and I don't know how well I'll handle that.
Haircut aside, I hate that he's going to have to go through all of this again. I keep telling him it's going to happen and that he's going to be okay, but, of course, he doesn't get it. The doctor says that he shouldn't need to stay the night which is good news, I think. There's part of me, though, (probably the same part that wanted to just move into the hospital and stay there so I could know Levi was being properly cared for) that wants to stay overnight. I don't want Levi to go through all of that, be sent home, and then called back because they weren't sure about something and have to go through it all again. I don't want them to miss anything. I want them to see everything that goes on in his brain all night long and make sure he's not having seizures in his sleep, when I can't watch him. At this point, all I can tell the doctor is that I haven't seen any seizures, but that doesn't mean he hasn't had any. I want to KNOW that he's okay, and only they can determine that.
So, please be praying for peace over Levi when they superglue those stupid probes to his head, for peace for me when they say it's time to go home and I want to stay to make sure they didn't miss anything, and for peace over Levi's body, that the seizures will be completely gone and NEVER return.