Friday, July 1st - Day 12 update

This morning we met with Tori's team of doctors and nurses and we all agreed upon pursuing a Tracheotomy (Trach) and a Gastrostomy Tube (G Tube). We all felt that even if we attempted the extubation again the possibility of Tori having 100% of upper respitory control was slim and not worth the risk. Tori's lungs are now at 100% of normal and the rest of her internal organs are also working great. We do not want to jeopordize that... She is on NO other medication except for the Keppra which is controlling her occasional twitching (myoclonic seizures). It is time for devotion to the next set of challenges regarding Tori's neurological capabilities.

Having the Trach and G Tube will help us move Tori into full rehabilitation mode more quickly and it will also allow us to be much more efficient during that totally unknown amount of time. Both the Trach and G Tube CAN be removed if Tori improves her gag reflex, swallowing and overall control of her body. Her surgery is targeted for next Tuesday and both the Trach and G Tube will be done while she is under anesthesia. Once the operation is complete it will take an addtional 5-6 days for recovery. At that point, if all is well, she will be ready to leave the PCMC.

We are currently researching where to place her next and have had a couple of options presented to us. One is to move her to the South Davis Community Hospital which has a pediatric rehabilitaion center. The problem for us is that it is in Bountiful which is even further away from the PCMC... We would really like to move her somewhere in Utah County so we, and all of Tori's friends and family, can be closer to her. I'm researching the Utah Valley Medical Center and Timpanogos Hospital facilities now. If ANYONE has suggestions or experience with rehabilitation centers or neurologists in Utah County please email me at tschmans@gmail.com

The other option presented to us was to just take her home and we do not think we are even close or capable for that at this moment... We can easily re-address this with some time and overall improvement by Tori.

Tori seemed pretty normal today. She was up and scanning with her eyes at times and sleeping otherwise. She did demonstrate closong both of her fists in the morning and at one point when the nurses were vacuuming her mouth she reached up with both arms and hands in what I thought was an attempt to block them. She couldn't quite get them high enough or utilize her hands to grip at this point. I'm hoping to see an upper cut punch to a nurse someday!! ;-)

Courtney, McKenzie, Nicole, and Caitlyn also came to visit Tori today along with moms Marilyn and Michelle. I'm sure Tori was wishing them all of the luck possible for their NYC trip and I wish them the best of luck as well. I am sure they will do great!!

Alright, that is all for today's update!!

Thanks,
-Tim