Could use some good thoughts, please, for my Boo. husband forgot to give him medications a week ago Sat night, and Boo had a sz Sunday morning. Pretty typical sz for him - 10 mins, done by the time EMTs got here, nothing more while in ER, normal labs, then home. husband is still alive - I showed great restraint because I knew he felt horrible, though of course my impulse was to rip a few of his limbs off to beat him with.
Thank God Diva is on spring break this week. I was working Tues morning, Boo was in family room watching his MTV, Diva had bought into blatant bribery and was sorting laundry in family room. She hollers at 11:00, "Mom, I think Boo's having a seizure." Yep. Go into the routine, get him on floor, give Diastat, crank oxygen, Diva calls 911. They're here in 2 minutes (I *love* our EMS guys). Scoop and run. Boo's still seizing. I get to ER where they make me *wait*. ARGH! I get back there finally and he's still seizing, though no one is doing much. Some little MA came in to take his temp orally, and I told her that a) he can't do oral temps anyway because he doesn't close his mouth and b) he sure as *heck* can't do it when he's still SEIZING!!!! I'm explaining to resident that nystagmus and unresponsiveness equals seizure, she's putzing around, and then he goes back into full body convulsions. It was just awful. They finally got him to stop, after 50+ minutes. 4 mg of IV Ativan, plus the 10 mg of Diastat I gave, plus the seizure - the kid was wiped out.
His PCP wanted him on monitoring - I tried to get him transferred to her hospital, but there were no beds, so he was admitted to our local hospital, *not* on monitoring, so I spent the night with my hand on his chest. Medical care at it's finest - not. I finally parked his wheelchair in the hall yesterday afternoon to let them know we *were* leaving, LOL. Got home about 6 last night.
No one knows what's going on. No infections, no aspiration, nada. Nutritionist came in and told us he had the best protein levels of anyone she'd seen in forever (yea, we're doing *something* right). They kept telling me they had to send the tegretol levels out - bologna. Found out last night they never even drew them!!! STAT level was fine as of last night. We've increased the Keppra now to 1000 mg bid, continuing Carbatrol at 400 bid and Topamax at 200 bid.
I'm scared. I hate not knowing why this is happening. I thought since he'd been stable for so long that we'd just continue on as we are. I want a reason, and a fix. I know I'm not going to get it.
Diva was a champ. It's been probably 6 or 7 years since she's had to endure the whole ER scene, and she was a bit teary-eyed, but I think she handled herself just great. She did ask me what happens if they can't stop the seizure - I couldn't bring myself to answer her - it's my deepest fear and I just can't go there. She apparently did ask husband Tues nite at home, and he told her.
Boo as usual is just the toughest kid I know. He was flirting with- all the nurses and lab techs, LOL. He does love women. He's really crabby and uncomfortable - I think Ativan hangover combined with- increased muscle tone, residual from seizure. I'm going to try to get him into PCP today, just to touch base with- her. We had neuro appointment yesterday at 10:15 - obviously didn't make that.
If you could send up a good thought for my boy and his wonky brain, I'd appreciate it.
Thank God Diva is on spring break this week. I was working Tues morning, Boo was in family room watching his MTV, Diva had bought into blatant bribery and was sorting laundry in family room. She hollers at 11:00, "Mom, I think Boo's having a seizure." Yep. Go into the routine, get him on floor, give Diastat, crank oxygen, Diva calls 911. They're here in 2 minutes (I *love* our EMS guys). Scoop and run. Boo's still seizing. I get to ER where they make me *wait*. ARGH! I get back there finally and he's still seizing, though no one is doing much. Some little MA came in to take his temp orally, and I told her that a) he can't do oral temps anyway because he doesn't close his mouth and b) he sure as *heck* can't do it when he's still SEIZING!!!! I'm explaining to resident that nystagmus and unresponsiveness equals seizure, she's putzing around, and then he goes back into full body convulsions. It was just awful. They finally got him to stop, after 50+ minutes. 4 mg of IV Ativan, plus the 10 mg of Diastat I gave, plus the seizure - the kid was wiped out.
His PCP wanted him on monitoring - I tried to get him transferred to her hospital, but there were no beds, so he was admitted to our local hospital, *not* on monitoring, so I spent the night with my hand on his chest. Medical care at it's finest - not. I finally parked his wheelchair in the hall yesterday afternoon to let them know we *were* leaving, LOL. Got home about 6 last night.
No one knows what's going on. No infections, no aspiration, nada. Nutritionist came in and told us he had the best protein levels of anyone she'd seen in forever (yea, we're doing *something* right). They kept telling me they had to send the tegretol levels out - bologna. Found out last night they never even drew them!!! STAT level was fine as of last night. We've increased the Keppra now to 1000 mg bid, continuing Carbatrol at 400 bid and Topamax at 200 bid.
I'm scared. I hate not knowing why this is happening. I thought since he'd been stable for so long that we'd just continue on as we are. I want a reason, and a fix. I know I'm not going to get it.
Diva was a champ. It's been probably 6 or 7 years since she's had to endure the whole ER scene, and she was a bit teary-eyed, but I think she handled herself just great. She did ask me what happens if they can't stop the seizure - I couldn't bring myself to answer her - it's my deepest fear and I just can't go there. She apparently did ask husband Tues nite at home, and he told her.
Boo as usual is just the toughest kid I know. He was flirting with- all the nurses and lab techs, LOL. He does love women. He's really crabby and uncomfortable - I think Ativan hangover combined with- increased muscle tone, residual from seizure. I'm going to try to get him into PCP today, just to touch base with- her. We had neuro appointment yesterday at 10:15 - obviously didn't make that.
If you could send up a good thought for my boy and his wonky brain, I'd appreciate it.