Wednesday, July 6th - Day 17 update

Hello everyone,

Today was a busy day for not only Tori but for Maria, Sophie and I as well.

Tori is recovering nicely from her operations but she is still taking some pain medication which seems to make her even more drowsy. She was still awake for much of day and the ventilator was removed for approximately four hours. She was breathing through her Trach completely during this time. This exercise will be repeated through the next few days to make sure Tori can handle her breathing on her own. Once this occurs and the Trach is healed she will be listed as 'Stable' and we will be able to relocate her.

I was not able to solicit a smile from Tori today so I tried another tact. I finally demonstrated and asked her to move her jaw and mouth around in a circle and she actually complied immediately and did it. She did it only once, but it happened and the nurses witnessed it. Tori also continued scanning the room and focusing on objects during her awake times. She also really seems to enjoy her daily massage on her legs each morning.

We are also cutting Tori's Keppra intake in half tonight starting at 8:00pm. She gets two doses a day, one at 8:00am and the other at 8:00pm. We are experimenting to find the exact levels needed to prevent her Myoclonic seizures. The belief is that the less Keppra she takes the less drowsy she will be and hopefully the more interaction she will have. This should make tomorrow more interesting for sure.

Maria, Sophie and I also went to visit the South Davis Hospital where Tori was scheduled to go next. One of the probelms we have with this hospital is that it is another 20 minutes further from our home in Orem. The wrong direction for us... Our commute would be at a minimum one hour and 15 minutes one way. We were given the tour at 11:00am and to be perfectly honest with everyone it was eye opening and depressing. Seeing all of the long term patients with various and serious disabilities made the reality of Tori's condition hit home very, very hard. Maria and I were in immediate and complete agreement that Tori would not be spending any time in this facility or any like it. We would much rather give her support a shot on our own and have her at home with her family, friends and some professional home care help. I am still going to research and personally visit some more Rehabilitation Centers in the Orem area and if a one fits the bill it may be used as an interim solution until we get our home prepared. So more touring for Tim is on the schedule for tomorrow.

I guess that is it for tonight. Maria and I will be taking our first two hour Trach course tomorrow. There are 5 courses and each lasts two hours. This will be absolutely needed if we are to bring her home and many other members of the family will be trained as well.

Thanks again everyone and good night,

-Tim