Wednesday, August 10th - Day 52 Update

Hello again,

I found out today through email and phoen calls that there are many, many people who depend on their morning Tori update just as much as their Starbucks!! ;-) I was a little late on my daily update yesterday because Tori actually slept through the night and didn't wake Maria or I up. Usually I can depend her for a wake up between 1:00am and 5:00am so I can then go post an update but yesterday she broke the trend so I'm actually posting tonight BEFORE I go to bed :-)

Tori did very well again today as she was awake and rarely agitated. We upped her Keppra dosage a bit more after our meeting with all of the doctors today. Tori's Myoclonic tremors are still evident but they are definitely not as strong and again, they do not seem to agitate her nearly as much. Tonight Sande, a technician who was assigned to Tori a week ago, is back watching Tori and she is amazed at her progress. I had the opportunity to demonstrate for her my calming techniques on Tori and she watched as the tremors just disappeared!! In reality, it's pretty much ALL Tori doing this rather than me...

Tori was again placed in a standing position today by the physical therapists. She did well and this time stood for 30 second intervals rather than the 10 second intervals of yesterday. You could easily tell it gave her a workout because she was breathing very heavily when resting.

We added 5 milliliters of water to Tori's 80 milliliters of feed for an 85 milliliter per hour total input. Not much of a residual appeared on her G-Tube venting and she had 3 bowel movements today so her digestive system is responding pretty well. We will cut off the laxative type medications at this point though...

Maria and I met with the following doctors today: Adam and Chad from medical, Teresa and Ethan from rehabilitation, Josh from neurology and our case workers Cathy and Susan. We discussed Tori's current condition and outlined the next set of steps. Tori's digestive system is mostly back on track but we will evaluate her for an GJ-Tube in her stomach so we can rid her of NJ-Tube in her nose. The GJ-Tube will replace the G-Tube and allow us to place feeds into her stomach or small intestine from that single position. We still need to start placing feeds into her stomach at some point. Tori's Keppra dosage has been upped and her Zanaflex will be reduced to only one dose at night to help her sleep. No doses will be given during the day. Melatonin and Bennedryl will also be leveraged to make Tori sleep at night. We are trying to ween her off of Valium doses. I believe Tori's total drug count is now at 10 and I will break those down tomorrow for everyone. We will also complete a Intrathecal Baclofen Pump test on Tori next Monday when we will directly inject Baclofen into Tori's spine and monitor the results for a day. The results of that test will indicate if the Intrathecal Baclofen Pump will be beneficial to Tori or not.

All in all the meeting went very well and our strategy is in place. The meeting was necesary because we needed a united front against the insurance company's efforts to move Tori out of the PCMC. I won't go into details on this challenging front but it unfortunately does add additional and unwarranted pressures to this whole situation... There is a possibility that Tori will be moved to the Health South Hospital in Sandy sometime next week but that all depends on how well she does. We shall see.

Thank you again for all of your support!!

-Tim