Friday, September 16th - Day 89 Update

Good evening,

During Thursday night Tori once again woke up at 3:00am which seems to be her middle of the night wake up time lately... She was given another Valium and afterward she slept until 7:30am this morning.

The physical therapists came into her room just after 9:00am because of her scheduled GJ-Tube placement at 10:00am. She went through the usual routine of arm and hand stretching. Tori's left arm has greatly digressed since arriving at the PCMC. At HSH, Tori was able to move her left arm in many directions at will and would often extend it for you to hold. Now it remains locked at her side and moving it is extremely difficult at best... She just trembles when you attempt to move it and it is presumably related to her SMA Syndrome. She also turns her wrist completely inward which causes additional stress to her shoulder. Her right arm remains about the same as it was at HSH. It is very frustrating to witness some of Tori's backward progress in some areas. It just takes so much effort to get minimal advancement and you hate to see that leave... We will get it back though!!

Tori's GJ-Tube placement slipped out until about 11:30am when I left the radiology room just prior to the procedure. The new GJ-Tube was a different style than the previous versions. It is more rigid and will hug the walls of Tori's stomach to prevent it from being pulled up again from her small intestine. The J-Tube portion also includes a weighted end so gravity and the pulling nature of Tori's bowels should help to keep it in place. Peter the radiologist was pretty confident it will remain in place. We are hoping he is right. He also removed Tori's NJ-Tube so her face is cleared once again.

Tori was immediately started at 40 milliliters per hour of the Nutren 2.0 feed after the procedure. This quickly moved up to 85 milliliters per hour as Tori handled the input well. We are on our way once again to fatten Tori up a bit!!

Tori's Bilious output from her stomach was half of yesterdays so there is progress on that front as well. The bile color is also a light green as it should be. Now we just need Tori to maintain this.

We basically let Tori recover for most of the day after her GJ-Tube procedure. We didn't push anymore therapy on her and let her visit with Gary and Toni, then Michelle and Kourtney who came in during the late afternoon. Tori also remained relatively calm throughout the day following the procedure.

Maria and I also wanted to provide a special thank you to Tori's technician Gabrielle who has watched her over the past few nights. All of Tori's CMU nurses and technicians have been absolutely great but both Maria and I frequently wake up while at the hospital during the night and Gabrielle is often alone and helping Tori by massaging and comforting her. Some of the nurses and technicians have daughters Tori's age and there definitely is a special connection. Gabrielle is one of them. Thank you so much again Gabrielle and the rest of Tori's nurses and technicians as well!!

Until tomorrow,

-Tim