Saturday, July16th - Day 27 Final update

What a difference a day can make... Saturday started great as I mentioned in my morning update but as the day progressed she had some trouble as Guy portrayed in his mid-day update. I also spent the night in Tori's room again.

All I can say is the doctors and neurologists here are going to have to nail down the exact drugs she needs before she leaves this place. And I expect to see her calm and without any of the Myoclonus activity for at least two or three days straight before we go. I can't imagine what it would have been like if she had this happen in a health care center where there are no permanent doctors on call... It CANNOT HAPPEN at a place like that!!

Tori is so very, very physically strong. Maria, Grandpa Schmanski and I did our very best to prevent her from hurting herself and us during her extreme episode yesterday afternoon. She ws pulling her entire body up just by her arms in our hands. She was also very angry and her face turned beet red and she was sweating profusely. She fought like this for a FULL two hours before they pumped enough drugs into her to get her to sleep. She basically ran a marathon during the afternoon...

We can also now tell exactly when the Myoclonus is setting in. The tremors in her feet typically start at 3-5 minutes apart and eventually get to 1-5 seconds apart in 30 minutes or so. At that point she is very much in pain and uncomfortable... If the drugs are initiated at the onset as I would like the episode would be not near as bad but there are delays unfortunately in getting the drugs quickly which is frustrating. I don't wait a second anymore in finding a doctor as soon as I see the initial signs of an episode. Then there are the drugs!! What didn't they give her yesterday... Lot's of Ativan, Haldol, Benadryl, Melatonin and more Clonidine. The standard Valproate was given as well. Again, the right combination needs to be found very soon to prevent episodes like this all together. The Ritalin factor in all of this was the main issue and it without question will not be given to her for a while...

The afternoon episode lasted from 2:00pm until 5:00pm and I went through the same thing again last night from 9:00pm until midnight. The good news was that she was still so sedated from earlier she couldn't fight it nearly as much. I also had to break in my poor, brand new to Tori, nurse last night under these conditions. I told her we have been in the PICU for 27 days and I know how Tori is feeling and responding and what and when she needs attention. She was very gracious and heeded to any advice I gave her on Tori which made Tori's care much easier.

Let's hope and pray for a great Tori day on Sunday!! I need a little break now as well...

Thank you all again,
-Tim