Our night went fairly smooth, seizure wise. During the night Colbey Raye had 2 seizures each lasting about a minute and she went right back to sleep after! Getting her IV placed has been another story. IV therapy came in 3 times thoughout the night trying to place an IV, with no luck. Colbey Raye’s veins would not open up enough and it resulted in a few ballooned veins and a very upset Colbey Raye. I suggested just doing loading doses orally, that is what we do at home, and they decided to give her a breaking from the needle pokes. At 9:30 the nurses began prepping Colbey for her EEG, and at 9:45 she began to have a cluster of seizures. She had 5 in 20 minutes and after talking to the doctors they decided she needed the IV placed. 4th times the charm! IV therapy placed the IV and back to sleep went Colbey Raye.
Colbey Raye has had one seizure since the cluster earlier and this one was recorded on the EEG. I just finished talking with the attending neurologist Dr. Ferri and he brought me up to speed on the new plans. He wants to try and cut the EEG Short so she doesn’t have to be hooked up over night. Dr. Ferri feels that if we catch a few more seizures with in the next hour or so we can stop the EEG and move onto our next plan of action, adjusting medications. The plan is to discontinue one of the 3 medications she is currently on and start a brand new one. The question is which of the 3 to pick? Dr. Ferri is consulting with a few others to determine which medication is the best option to replace, he is leaning towards the Keppra. This medication change is expected to only give Colbey Raye a honey moon period long enough to get her set up for an outpatient PET and MRI. They don’t want to run a PET until Colbey Raye’s seizures are better controlled and because she will need to be sedated for both tests they want to run them on the same day. Dr. Ferri is really trying to keep her medication load at 3 medications but if the swap does not give Colbey Raye a period of seizure freedom then she will possibly be put on a 4th medication to help. Last but not least, a meeting with the Nero surgeon? Dr. Ferri is going to see what he can do about getting us a meeting with the Nero Surgeon. It might be a long shot and I’m not getting my hopes up yet, but He first needs to go over things with Dr. Kuratani the Epilepsy specialist and make sure we can take a step in that direction. Just a meeting, nothing more, but it is a step.