Thursday, August 18th - Day 60 update

60 days!! Wow!! We've definitely have been through alot in the past 60 days and the future is full of unknowns as well. But all we know how to do at this moment is to continue to move forward and hope, pray and strive for the best outcome possible concerning Tori.

Tori provided Guy and Sophie a nice, uneventful and restful evening. The bag suctioning continues at times during the night and it alone is Tori's sole agitation source. Most of the time it makes her feel much better and she returns to sleep but occasionally she cannot and Valium is used to calm her again. This seems to be very hit and miss process as well and it all depends on Tori.

Tori remained awake for the entire day again and watched movies, tracked well with her eyes, received physical therapy and generally stayed in good spirits. She did catch her lower lip again with her teeth but late in the afternoon she received her molded bite guard which fits nicely over her upper teeth. It appears very comfortable to her and it prevents her from biting her lower lip. It is difficult to slip off her teeth but Tori is already trying to remove it with her tongue so we will have to see how she does. The PCMC Dentists also deserve a BIG Thank You for building this so quickly for Tori!!

Since Maria and I were at home today, I called the hospital in the morning and they informed me the GJ-Tube surgery was scheduled for 1:00pm. We left Orem in anticipation of this but upon arrival at the hospital the surgery was already completed and Tori was in her room!! Thankfully it went flawlessly this time and they had bumped her surgery up to 12:00pm without mentioning it. So feeds are now being given through the GJ-Tube and the NJ-Tube in her nose has been removed. Now if we can get the NG-Tube and suction hose from the other side of her nose removed we will be set. That probably won't happen for a while since we want to keep a close eye on her stomach.

We would really like to take Tori out in her wheelchair for a ride but the IV's she currently has for antibiotic medications makes it such a difficult process. Tomorrow we will just have to deal with it and get her up and out of that bed. Once the antibiotics are done being administered the IV's can be removed as ALL other medications are now delivered through her GJ-Tube.

Alright, here is the most positive and humorous story of the day. At one point, when Tori was really agitated and inconsolable, I grabbed one of Sophie's powdered sugar coated almond cookies and put it right in her face and asked her if she wanted a cookie. She immediately stopped her agitation and stared directly at the cookie with wide opened eyes!! For Tori's nurses only - please stop reading this now!! ;-) I'm not really supposed to do this but I wiped some of the powdered sugar and frosting on my finger and asked Tori to open her mouth. She of course obliged so I placed it on her tongue and she closed her mouth for a while then gave me a swallow. The temptation generated for Sophie's cookies is legendary and I knew she couldn't refuse another taste or two so I delivered :-)

Maria is staying with Tori tonight and from what I currently understand Tori is in a sleeping mood. That can of course change in an instant but I'm hoping Tori provides Mom with a nice break tonight!! :-)

Good night!!

-Tim