Tuesday, August 16th - Day 58 Update

Hello all,

Tori ended up recovering by sleeping all day after her 35 hour staying awake marathon yesterday. She slept all through Monday night for me even when they bag suctioned her several times during the night. She woke up at about 9:00am for an hour then went back to sleeping. During the day she would periodically open her eyes but would fall asleep soon after. It's 10:00pm now and she is still sleeping. Her temperature continues to spike at times but she remained normal for most of the day. We believe she is sleeping alot because her trach culture has shown Cocci related bacteria in her lungs now... They suctioned out of her a full 1500 milliliters of vile and smelly Phlegm over the last 36 hours. She is now being given the Zosyn antibiotic to battle this bacteria.

I met with the therapy doctors Teresa and Ethan this morning and we are all optimistic about Tori's lack of Myoclonic Tremors. We are actually believing the 600 milligrams of daily Keppra is working so we decided to cut her Baclofen dosage from 100 milligrams per day to 80 milligrams per day. Baclofen is used to maintain Tori's Muscle Tone and after checking her arms and legs today her tone is holding up quite well. Her arms are doing considerably better and they can be basically set into any position at this point. Out of the 9 consistently taken medications Tori is now on, Baclofen causes the most drowsiness which is primarily why we want to reduce it.

The physical therapists will begin working on Tori again tomorrow. I found out today that since Tori came back form the PICU (Pediatric Intensive Care Unit) to the CMU (Childrens Medical Unit) she is considered a 'new' patient to the unit even though we came from there of course... So new physical therapy orders had to be created for Tori today. I'm still learning alot about hospital procedures and politics...

Tori is scheduled tomorrow to get her GJ-Tube inserted into her small intestine again. Remember that last time the GI surgeons were unsuccessful in doing this and had to resort to the NJ-Tube through her nose... They will have medication ready this time to make her Pylorus more relaxed and hopefully will have success. Tori is still having Bile suctioned from her stomach and again, this is only a short term solution. The real issue, whatever it is, still needs to be addressed.

I decided to stay with Maria tonight in Tori's room to test the theory that she is jinxed as Tori never seems to sleep for her when she is watching ;-) We will see what happens tonight!!

One more quick note. Today as I walked by the 3 publicly accessible computers in the hall I noticed that all 3 of the people using them were on the http://www.pray4tori.com site!! Very cool!!

Thanks again and please wish us luck for tonight!!

Tim & Maria