What a lovely evening. I am lying. There is a possibility we will be discharged tomorrow instead of Friday. If there is a God, he will get me out of this place. Oh, Connor’s fine. But I’m going mental. I can actually handle staying here, no problem. It’s the not having control thing that is making me completely insane. Tonight the meds came an hour and 15 minutes past his med time. By then I’d had to give in and feed him although feeding him is essential to getting the meds into him, and we’d missed the window to put him to sleep. So my baby that goes down no problem 98 percent of the time, screamed for an hour, and now continues to stir every so often and wake up to cry enough so that I have to pat him back to sleep. Just when I thought we established a firm schedule of the meds being 40 minutes late. Look, if you won’t allow me to do it, then you gotta bring them on time. And if you’re understaffed and it can’t be done, well, then you’re gonna have to let me freakin’ do it. I’ll sign a damn waiver.
So, the big news! What do we know so far? Our neurologist stopped by to talk about what he’s seen so far on the EEG. Connor has had a few episodes now which could clearly be seen on the video and the neurologist has gone over the activity that coincides with those events…and the conclusion is: Drum roll please!!!! (you better be pounding your desk at home)
Nothing. We still don’t know. Nothing is there. No seizure activity is appearing on the EEG. Everything looks good in the abnormal way the EEGs of people with TSC can look good (meaning it is normal for people with TSC to have an abnormal EEG due to the tubers, even if they are having no seizures).
WTF, baby. WTF.
Since all the activity is with the eyes he added two more electrodes right next to them to see if that changes anything. So we shall see. I suspect we will check out knowing no more than when we came in. However, we may be increasing the keppra as his episodes got shorter last time we did. And possibly going down on the klonopin (clonazepam) as that never seemed to do much.
So, I’m glad the EEG looks good, but ummm, apparently we need to work on Connor’s attitude because he rolls his eyes at me at least 50 times a day. Just kidding. I don’t know what to think.
I just scanned over what I’ve written so far and it reminds me of why I hate baby discussion forums. Everyone talks in acronyms and I got sick of having to google everything they said.
The day was otherwise exciting as the kids got a visit from the seizure dog today. Connor loves dogs. I’m bummed I wasn’t able to snap a pic of the big smiles he had when the dog came in. It makes me really want to get him one, but Chris and I both agreed they were too much work. So we had a baby instead.
Connor also managed to massacre the electrodes on his head today. Two factors contributed to this. One, he inherited this crazy gene from his father that makes him sweat even when it’s 20 degrees out. Two, he likes to yank on things, especially wires and hair. Once he had created a sweat lodge inside his gauze turban, it was all over. It started to unravel around 4. Previously someone had come in right away if something came loose, but this time no. I casually mentioned it to a nurse, but I guess I didn’t properly express the imminent danger of these tiny little hands. Later, Aunt Donna came to watch while we went to dinner. It was straight raggedy by then. And when we returned, I guess one of the techs had shut it off from their remote monitoring station (perhaps located in the Lost hatch?).
Just then the nurse arrived, so I addressed the elephant in the room.
“So we’re here for an EEG, and jeepers this is awkward, but there is no EEG. Does this mean I can go home and hit the Jack Daniels?”
I will say, someone was there shortly after to redo it. Shift change had just occurred. When I replied 4 o’clock to her inquiry about when this started coming off, her expression was, well, I will call it “interesting.”
- In the Hospital Doing a Video EEG Session (initfortheparking.com)
- Creating Music Using Brain Waves: Just For Fun Or Clinically Important? (healthland.time.com)