Saturday, July 30th - Day 41 Update

As Guy reported in his mid-night and early morning update, Tori had another restful night and required only two doses of Valium to keep her soundly sleeping. Thank you so much Tori for giving Guy and Grandma Schmanski a peaceful night as well.

This morning when Maria and I arrived Tori was in the most comfortable and relaxed state we have seen her in for a long, long time. Her arms were loose and resting on her stomach rather than in the normal tight biceps and wrists to the shoulders position. We could easily move her arms and legs around and no resistance was offered by Tori. She was awake and calm as we did this and she did NOT become agitated at all!! Better yet, she wasn't on any anxiety or pain relief medication at the time either. She was just on her standard medications: Baclofen for Spasticity, Propanolol and Clonidine for Thalamic Storms, Valproate and Clonazepam for Myoclonic Jerks or Dystonia. At some point we would even like to trim that list down a bit...

So Tori was in a perfect state for an experiment this morning. We brought in my computer and the "Dance Club Company Showcase June 30, 2005" DVD which we just received and has all 52 dances the company performs at competitions. Maria and I actually attended the Showcase when it was recorded. Earlier this morning, our initial viewing of the DVD brought out many tears for Maria, Whitney and I because there is a moving tribute to Tori at the beginning. We will try and post it to the site for everyone to view as soon as possible. We placed the computer close to Tori and hit play and Tori began watching the DVD. Her heart rate jumped 20 points immediately and her breathing rate increased as well. Her eyes became wide open as she watched the tribute and everyone except Tori cried again... Tori was truly enthralled with the DVD and the numerous dance performances we played for her especially those of which she was originally in. Watching her dances and listening to the music for them definitely stirred her and her arms and legs began to move as she continued to watch. She watched dance after dance and remained relaxed and focused on the screen until we had to stop and get her ready for her PICC Line insertion. We can now hardly wait to try this type of stimulation again!!

Tori then went back down to the PICU to get the PICC Line installed and that was not nearly as fun... First they knocked her out and paralyzed her with a powerful narcotic and when they started to insert the PICC Line they noticed she was still moving so they gave her another dose. A nurse was the first person who attempted to place the PICC Line for about 30 minutes and she couldn't do it!! Maria, Todd and I were watching the somewhat bloody mess the whole time from a short distance and were dismayed to say the least. They finally called in the expert PICC Line person who asked how long she had been a nurse?? I muttered "A week!?!?"... The expert had to give yet another dose since it had been so long since the procedure started and he was finally able to complete the procedure in another 15 minutes. We then insisted on an immediate X-Ray to ensure the PICC Line was properly placed before stitching it down. We haven't forgotten when the last PICC Line was 4 centimeters to far and pushed directly into Tori's heart... The X-Ray showed a correct placement so they stitched Tori up and moved her back to the CMU to recover.

When we left at 8:30pm tonight she was still very much sedated and recovering. Her feeds were also started up again. My brother Todd is staying with her tonight and when I called at 10:00pm she was still out. Hopefully she will wake up a little bit for some interaction before sleeping the rest of the night.

That is it for now and we are really looking forward to tomorrow. We are planning another "Day at the Spa" for Tori then a wheelchair ride outside and around the hospital. We are praying for her to be feeling well and in a great mood for the activities :-)

Thank you all,

-Tim

Last Note: The "Dance Club Company Showcase June 30, 2005" can be purchased from http://rememberwhenvideos.com if anyone is interested.