Monday, August 1st - Day 43 Update

Tori ended up requiring a Valium dose every two hours or so late last night and very early this morning. She continued to have the Myoclonic Jerks throughout this time. They were separated by 5-10 seconds each and at times quit for a few minutes but then they would return. Tori was not really agitated with them but they definitely prevent her from sleeping comfortably and soundly... Tori was also suctioned several times during the night as normal.

She had a fairly active morning and early afternoon as we placed her in her wheelchair for a while and had many visitors come by including Amber, Missy, Caitlyn, Meagan and Courtney. This group of girls came around 2:00pm or so and after about 10 minutes of conversation with Tori, she completely fell asleep!! I told them they bored her into it and to stop by anytime ;-) It was actually just great to witness as there were no drugs involved and she really, really went into a deep sleep all on her own. She was totally relaxed with a 80 beats per minute heart rate and a breathing rate of 15 breaths per minute and absolutely NO MOVEMENT at all!! No Myoclnic Jerks or Dystonia at all. I also firmly believe Tori can control those actions because if I can verbally get her to relax and become unagitiated at all they will go away for periods of time. Now we need to get her to learn how to do this then repeat as needed.

I also spoke to several of Tori's Physical Therapists about the Myoclonic Jerks or Dystonia. Again, they are unsure whether the 'twitches' are associated with either... I had Tori relax at one point to demonstrate her perceived control of them and they suggested running another EEG on Tori when she is having the referred to from here on out 'twitches'... By studying the neurological brain waves during one of the twitching episodes they can make a better diagnosis on the issue. Hopefully that is... Again, for everyone to visualize this, when Tori twitches she basically moves her wrists to her shoulders in a bicep curl type position and her lower back arches to some degree. Her feet and legs may also raise a bit during an episode. The movements all happen simultaneously and can vary in frequency and in force of the movement.

Since Tori is recieving the maximum dose of Baclofen she can have (100 milligrams total per day), we are looking at alternate methods of giving it to her other than her stomach which is the current approach. We can also directly inject it into her spine and if that works well we can consider a BaclofenBaclofen Pump. This would be a future step if we cannot eventually find the right solution. It was also recommended to try a Zanaflex dose just before Tori's bedtime. It might help her to sleep calmly during the night and Maria will try it tonight if needed.

Tori had a complete culture sample taken again to make sure her fever yesterday wasn't due to her aspirating vomit again. The results should be done by Wednesday. We were informed today that the E coli bacteria does not exist in her blood anymore and the last Pneumonia is almost non existent. Tori finally had a bowel movement today and she also had more X-Rays done of her stomach and lungs which again showed no issues. So we started her feeds again tonight based on this information and we started them real low at 10 milliliters per hour continuous feed. We will leave it at this level until we get steady digestion and bowel movements and NO vomiting of course...

Tori last set of visitors tonight included Abi, Nicole, Annie and Kara and her mother. I might have forgotten one here... I'm sorry if so. Tori interacted quite well with this group for close to 45 minutes.

I believe that is it for today. All in all it was a pretty good day for Tori. She was rarely agitated, she had alot of visitors, she is eating again and she had a great nap. Now if she can repeat this again tomorrow we will all be real happy!! :-)

Thank you all again and good night,

-Tim