Quite a lot to talk about

Jessica spent the night again last night (Tuesday). She and Lauren stayed up late, started to watch a movie, but turned it off to talk.

Lauren didn't want us to go last night, she was afraid of having another seizure. Jessica was very quiet and gentle as she explained that the stimulation caused the seizures, and that put Lauren's mind at ease. She eventually let Sandra and I go. By the time we got home we were exhausted.

We woke up with no calls or messages from the hospital, so we ran this morning in Valley Green. It was nice to run together again. When we made it back to the car we had messages from Jess that Lauren had a grand mal at 9:10. Jess said she thought it was a progressive one, which is good. We are looking for ones that start small and get bigger. Turns out she had a second one in the 11 am hour, as Sandra was taking the train to the hospital. Once Sandra arrived and spoke to the neurologist, they determined that if Lauren had another grand mal they would sedate her with Versed or Atavan. I remember someone saying to me that if a patient has 3 grand mals in 24 hours, they sedate them. So far, no more seizures.

I think at this point they have all the information they need. Sandra and I were talking about it this morning. Ideally, they would have naturally progressive seizures as your medication wore off. In Lauren's case, she went from 0 to 100. Straight to grand mals, or more specifically, straight from insignificant EEGs to huge, wild, distorted ones. That is why they put her back on Dilantin, so they could find some middle ground. Of course, while they waited, they took the aggressive approach and did the stimulation. I suppose if we had some smaller, progressive seizures between now and when the PREP team meets on Thursday, that wouldn't hurt.

Tommorrow afternoon the PREP team (20+ people) will meet to review the case and present an action plan. Word on the street is that if they remove what they need to to give Lauren the best hope of being seizure free, it will impact her left shoulder and leg. To what extent we do not know yet. Could be numbness, could be limited range of motion. We will have to see. Hopefully, rehabilitation will be effective but we haven't discussed that with them yet. I left work early so that we could brainstorm (no pun intended) questions. Lots to talk about and hard decisions to make.

Looks like we are on track for surgery Friday. Definitely to remove the grids, maybe to remove the problem area. Titanium plate, PICU, then probably a couple more days of antibiotics.