My little druggie

So, I called the neuro group yesterday on the off-chance that I could pick their brains about curtailing the seizures again (even though I knew what they would tell me). Nervous Nelly that I am, if I feel that she needs Diastat (which we gave her two nights ago), something more needs to be done to alleviate the severity of her clusters. They put the middle man (the staff nurse) on the phone to do their dirty work. Nice lady, but 100% clueless about Jade's situation. After four separate phone conversations with her (grrrr! ), trying to get the simplest answers from them, this was the doctor's directive: dope her up. The much hated drug Klonopin (a benzodiazapene), was their suggestion. I didn't think it helped much before, but my biggest hesitation for not using it is because it really makes her lifeless (and constipated). I knew there wasn't much else to do, so we started the higher dose yesterday. Today, she is a rag doll again. I also had to give her another enema because she has no desire to "move" or interact in any other way. I hope she's at least a little more comfortable now. She slept a little better last night, but I imagine having a seizure cluster last for a solid hour (from 8-9pm), anyone would sleep well. She clustered again for an hour from 4-5am, and then again from 8-9am. Gee, I'm glad she has Klonopin...! (yeah, I'm a little cynical)

We were also privileged enough to visit the Urgent Care to have a look at her ears, nose, and throat, and to listen to her chest. She developed a wet cough during the night, and the nurse from neuro suggested we have her looked at to make sure it wasn't serious. So, we trekked to the clinic and sat, and sat, and sat. It took over an hour to see the dr./nurse, only to have them give her an essential "clean bill of health". We think maybe the excess saliva from the benzos is getting caught in her throat, causing the wet cough. They sent us away with a script for a suction machine and a Happy New Year. Whatever.

As for the other two kids, they are unbelievably bored!! Unreal to me since I think they scored every toy on this earth for Christmas. We did play some pretty fun games, though. T and I pulled out Electronic Battleship (one of my childhood faves), and played until he got bored. I almost won, too :( Now, they are on to another activity.

To whomever reads this blog, thank you. Happy New Year too! May this new year be rather uneventful and healthier for my little angel.