Saturday, July 23rd - Day 34 Update

Tori did indeed graduate to the NTU yesterday evening as Guy posted earlier and she also decided to stay up all night to celebrate which is why I'm so late with this update... She remained in a low, agitated state basically from 10:00pm until 5:00am this morning. Low agitation refer to a heart rate of 115 to 125 beats per second and breathing rate between 25 to 35 breaths per minute. She has gone much higher than those figures during some of her Thalamic Storms but last night she just had just enough to prevent her from sleeping. Her normal sleep rates are a heart rate 80 to 100 or lower and a breath rate of 15 to 25 or lower. At 5:00am we decided to give Valium a try and it worked great!! Tori totally relaxed and is still sleeping at this moment and it's almost 9:00am on Sunday.

Since I'm a day late on this report I will back track a bit. On Saturday I spoke with the Lead PICU doctor in depth about Tori's next steps. We decided to take a radically different approach by eliminating the drugs Haldol and Morphine totally. Tori has been growing somewhat immune to the effects of Haldol just like she did with Ativan so we are going to stop using them. The Morphine is just very bad for Tori to use... We were also just working with too many drugs to know which ones were having which effect on Tori... So we upped the doses on Propanolol and Baclofen and are continuing to use Valproate and Clondine. We added Tranxene to the mix to replace the drugs we removed. The Tranxene will also be given at steady intervals throughout the day to hopefully prevent some of Tori's Thalamic Storms beforehand. Now we will wait and see how she reacts today and it is my goal to keep her up all day so Maria can sleep tonight!! Tylenol and Benedryl are basic drugs which can be given as needed for pain or as a sleep aid.

Early Saturday morning, 2:00am until 6:00am, Tori was agitated and had alot of coughing and the PICU staff worried again that she had an Pnuemonia. She x-rayed her lungs and ran all of the cultures and tests and it turned up negative. So we have a new theory on some of Tori's agitated states which are accompanied by the Thalamic Storms. We believe they are Anxiety Attacks brought on by Tori herself at times and Valium is specifically designed to stop them. Given the success of this morning we may be on to something here.

Tori's Saturday afternoon and morning were basically fine though she did rest alot. We did another practice wheelchair session and I recieved permission from the doctor to try her custom wheelchair. If she is feeling alright on Sunday we will try it.

Thank you all,

-Tim