Monday, July 18th - Day 29 Update

Hello again,

Tori had another mixed day today - some good items and some bad items. I would like to start with the good tonight and state that Tori went 31 HOURS straight completely off the respirator over last night and today!! Great job Tori!! She is also now trying to actually sit up in her bed and today while her and I were watching the "Incredibles" I actually had to reach over with my arm and stop her from tipping forward... No more high sitting positions for Tori unless she is fully supervised for sure. That was my lesson learned for the day. She was aware and awake just like we have seen in the past and she also had a another nice sponge bath and shampoo again today. She really enjoys the shampooing with all of the head scratches and massages!! :-)

As far as the bad items go... Tori had another Myoclonus episode... I was present in the room when it started at 5:00pm and I had the nurse start with an immediate dose of Ativan primarliy because it was not near the extent of Saturday's episodes. The episodes continued to get worse and rapidly more frequent for the next 8 minutes and Tori's heartrate zoomed to 170 Beats per Minute. She was then uncontrollable, biting her lip, red faced and tossing her arms around so we had to go straight to the Haldol... It took about 45 total minutes before she was asleep. Much better than Saturday's two hour episode but none the less frustrating to witness again. So even without the Ritalin she is still experiencing the Myoclonus so there will be at least two to three more days here in the PICU... We are meeting with the neurologist very early tomorrow so both Maria and I are spending the night.

The PICU Doctors have now doubled her Clonidine through a new patch so we will test that dosage again over the next couple of days. I really, really wish this was more of an exact science but it unfortunately isn't...

Today was also a very sombering and emotional day for everyone in the PICU as the Life Flight helicopters were flying non stop and ALL 32 PICU rooms became quickly filled. Walking through the PICU and outside hallways witnessing all of the families gathering, crying and praying took its toll on Maria and I today and it brought back unpleasant memories of our first couple of days here. There were more children who didn't make it today and our hearts go out to all of those families.

Many of the doctors and nurses were also visibly shaken and when we asked Barbara, another one of our favorite nurses, how can she do her job everyday in this environment she simply stated that with days like today she wonders herself but then she looks at someone like Tori who continues to astound and should absolutely not be doing the things she is.

Thank you so much Barbara as you have gotten us through this very hard, emotional and trying day as well.

-Tim and Maria