Dr. Paolicchi

Colette has had a glass half full day. She has been more alert like yesterday, however, every time she opens her eyes she goes into a pupil dilation, frantic, out of control eye movement and elevated heart rate (which is still too high to begin with). We saw these same things prior to surgery have been able to (what we call) "talk her out of a seizure" after a minute or so. This has happened about 10 times today. She has been more alert today, like yesterday. O.T., P.T., and Speech (to help with swallowing) kept us busy in the afternoon. We slept in the late morning due to being up with Lettie all night.
Dr. Paolicchi got back in town today and just came by our room. She is the neurologist who we have worked with from the beginning. We have the most confidence in her and quite frankly she is the physician for why we chose Vandy to complete the surgery. She has been out of town and this was the first time we have seen her since before surgery. Had we known she was not going to be here we would have postponed surgery! After talking with her we realize that we probably had too much faith in her and not our Lord. So, on to the meeting and where Lettiebug stands.
Dr. Paolicchi walked in the room about 6 p.m. and and gave Summer a long hug stating she was so sorry for the difficult time we are having. She is concerned with Lettie's current status. She asked how today has been and we told her. At this point Lettie woke up and did the same reaction except this time I was unable to "talk her out of it" and she had the same infantile spasm she had last night. Dr. Paolicchi was able to see this. She also stated that the white blood cell count is "way too high" and asked if infection disease had checked her (which they have not). We talked for about 45 minutes and came up with a game plan. She feels like the fosphenytoin is not the anti-seizure med we need to be on. We are going to start a ketogenic diet ASAP (kind of like an atkins diet). If she has another spasm we are adding klonopin ASAP and then would hope to wean off the fosphenytoin (but for a while we would be on Vigabatrin, Topamax, fosphenytoin, klonopin, and Ranitidine simultaneously). Otherwise we are staying on the fosphenytoin. We were told to expect more sedation with the klonopin but as long as it stops the seizures we'll deal with sedation (especially since we have been able to make eye contact over the last 2 days and see that the lights were on and somebody was home! Which was our major concern with the post-op sedation). The 2 major prayer requests are that we get the white blood cell count figured out and that we GET THE SEIZURES STOPPED! Overall we would say that Dr. Paolicchi was neither discouraging nor encouraging. She was more "baffled", but we have complete confidence in her skills. As far as a timeframe she just said laughing, you'll be here Monday.
God has given us a couple of nuggets in the form of miraculous coincidences that help to lift our spirits. We praise Him for this!
-New picture is physical therapy today.Lettie's arm is now in a sling for support. The second one is I guess where Jack and Coop were wrestling today and Coop snapped a pic. FYI they are doing fine!
Mark