Monday, July 4th - Day 15 update

Happy Fourth of July everyone!! :-)

Tori had another good night of sleep on Sunday and she was again pretty much awake for most of the day today. This morning I also saw her raise her left thigh and leg and place it over her right leg. I don't know if it means anything or not but it was something new. Tori was also awake upon our arrival today and she offered up a couple more smiles behind the big venitlator tube that is still in her mouth. At one point today when she was really in an awake state she was scanning the room with her eyes looking at people, the TV, various other items and she was trying to follow the sounds as we talked to her. Again, we don't really know what she is seeing, hearing or thinking but it sure does appear she is responding in some fashion. One of the Lead PICU Doctors was in the room with us at the time for about 20-30 minutes to see first hand why we still have some hope and faith in Tori. We also acknowledge that the odds and statisitcs against Tori recovering in any fashion are still against us but that will not stop us at this specific point. I also requested of her to try and reduce Tori's Keppra intake since we have not seen anymore Myoclonic seizures. Reducing the Keppra may or may not take away some of Tori's drowsiness. There is only one way to find out.

The night shift nurse also offered some input on Tori's Sunday night. Tori was listening to her iPod as she usually does at night and at about 11:00pm the nurse looked over at Tori and saw tears running out of both of her eyes. She then removed the iPod for a while as Tori calmed and placed them back on her a little bit later. I don't really know what it means but Tori typically will only cry if she has some hard coughing which hurts her throat or when she has gone though some serious stretching exercises.

Tomorrow is a BIG day for Tori and she will undergo her Trach and G Tube surgery at either 9:00am or 5:30pm. Please continue to keep her in your thoughts and prayers and I will try and provide an update immediately following the surgery. Within one day or two of the surgery the doctors will attempt to remove the ventilator totally. Tori should handle this well since the ventilator is basically there for backup and very minimal support at this time. I cannot wait to see her mouth and face finally uncovered and free of the ventilator and feeding tube!!

Thanks again everyone and good night to all,

-Tim