Wednesday, September 28th - Day 101 Update

Hello everyone,

We hit day 100 today update: (actually, yesterday - we had the numbers off by one day) on what has been a wild and unpredictable ride following Tori's accident. The good news is that Tori is still with us today and is always fighting. Many more challenges await her and we realize that everything ahead of us is still greatly unknown but all we can do is to continue to hope, pray and strive for the best possible outcome. Thank you all so much for providing the support Tori and her family needs to continue.

As I am typing this update Tori is completely mesmerized by the show "So you think you can dance?". She typically ignores the television and watches other equipment and people in the room but right now she is completely focused. Tori was taught dance by two of the judges on the show so again, we just wish we knew exactly what she is thinking right now...

Alright, Tori went completely OFF the ventilator first thing this morning and went ALL day without any issues. Her lungs are almost as strong as they were previously to Sunday but she did tire late this afternoon so we placed her back on the ventilator for a rest. She will remain on it tonight as well.

We were still unsure if Tori's new 'limb jerking' movements are seizure related or just a different looking form of myoclonus. In the past, Tori's myclonic tremors were very rhythmic and smooth. They weren't nearly as jerky or intermittent as they are now. If you get Tori to calm herself down the jerking stops just as the myoclonus did in the past. Another fact is that it has been quite a while since we have even seen myoclonic behavior in Tori so we WERE confused... So we decided to give her another EEG today. Tori's head was filled once again with probes and glue and electrical readings from her head were taken during her jerking. We are unsure of the results at this point. Tori has had two EEG's in the past and we want the PCMC neurologists to compare and give us a diagnosis. The neurologists here at UVRMC will also review the results which is good because they have a fresh perspective. We washed Tori's hair twice today and the glue mess wasn't near as bad as the last time we did a EEG.

Now, back to the WERE confused!! After I typed the update above I decided to THOROUGHLY review Tori's medications and I actually found one very important one missing!! Valproate!! One of the leading myoclonus inhibitors we used throughout our stay at the PCMC. We in fact kept upping Tori's dosage of it to keep her in the 80-100 levels. So I called one of Tori's old nurses at the PCMC and asked her to verify that Valproate or Depakene was still on her order when she left and it was - 650ml every 6 hours. So I had the ICU doctor immediately start her back on it tonight... ARGH!!... Tomorrow I will find out exactly how this one slipped by of course... Alright, on to the rest of the update...

Tori's vital statistics remained very sound once again today and she received the minimal PT exercises of basic hand, elbow and arm stretching. Tori's heightened sensitivity also still exists. We also received some new hand braces which also separate all of Tori's fingers on each hand. Putting this on Tori is a complete challenge!! We failed the first time today though we didn't try real hard. I am afraid it will take a serious valium dose before we can get them on her...

The antibiotics are continuing to fight the Staphylococcus aureus and Bacilli bacteria identified in her Phlegm. There are at least three more days of doses left for Tori on this front. We did NOT remove the Cefepime to see if it is causing the limb jerking because we felt in three days she will be off of it anyway.

Hopefully Tori will be moved out of the ICU sometime tomorrow.

Thanks again everyone,

-Tim, Maria, Tori, Whitney and Brendan