Friday, September 23rd - Day 96 Update

Hi there!!

Tori's great start of sound sleeping Thursday night didn't last too long as she woke up at 1:00am and several times afterward. Valium was needed to calm her as she was visibly experiencing some pain. She had some cold sweats on her legs and she ended up biting her lip just a little as well. It was enough to use the bite guard once again though... The source of her pain wasn't realized until 7:00am or so when the blood test results taken yesterday were reviewed. Tori is still very dehydrated even with the additional water added to her feeds. We immediately had to place an IV in Tori's hand and begin administering water in this fashion. We are placing 150 milliliters of water per hour through the IV and we are also replacing 30% of Tori's bilious drainage with water as well.

Tori was looking much better by noon today with all of that water being used. Her occupational and physical therapists added some leg stretching to their usual arm routines. They also sat her in bed and had her reaching down past her knees towards her toes to stretch her entire back. The speech therapists continued to try and get a 'yes' and 'no' response and they felt they had some success today with the eye blinking approach. Tori is still inconsistent and delayed in her responses so it is hard to tell. Tori also had some taste testing with lemon juice which caused her to swallow quite quickly.

Tori had a stomach x-ray taken today to study her stomach and her GJ-Tube opening was looking much better today. The stomach x-ray did show some J-Tube looping in Tori's stomach but the end of the tube is still exactly where it needs to be. Since we couldn't stay for the last GJ-Tube placement we don't know if they looped the J-Tube or not. This is obviously an issue we will watch very closely moving forward.

We tried to lower Tori's Keppra dosage today but we don't believed it worked since Tori had her myoclonic jerks appearing again... So we will bump up the Keppra dosage back to the original amounts. We are going to be reducing the amounts of various medications to study the effect's on Tori. We are currently on about 9 basic medications which is FAR better than the 20 we used to be on...

There were alot of visitors today which was great!! I won't even try to list them all... We are expecting a large turnout during this first weekend at UVRMC.

How about a short report for tonight as I am really tired and Tori should be as well for Maria... Good night once again and thank you all!!

-Tim