Monday, September 12th - Day 85 Update

Hi,

Tori continued to sleep very well during Sunday night. She woke up at 3:00am again and was only up for 45 minutes or so after we administered another Valium. She then slept until 9:00am and the real fun began.

We made a very sustained effort to provide physical therapy on Tori for much of the day. We all contributed in this effort. The various nurses Tori had, Sande the technician and the physical therapists themselves. We simply wanted to keep Tori's arms and hands loose today and not stiffened. We also massaged her arched back as much as possible. At one point there were about 4 of us working on her twisting her all over, massaging her arms and stretching her wrists. Tori must have thought she was in trouble or something but she actually handled it quite well. Once she gets a great therapeutic workout like that she seems to feel much, much better. We probably gave her a solid 2 hours worth of this type of therapy today. One of our goals was to try and totally eliminate her stiffened body parts as originators of pain. But she still exhibits grimacing and wincing though even with all of this help but it does seem diminished.

In fact, Tori was up all day and there seemed to be times where less pain was exhibited. But then there were a few times when it was very obvious. We tried to identify and tie anything to these cycles but nothing stood out... Tori had lung and stomach x-rays taken again today as requested and they both did NOT indicate any issues. We feel really bad for Tori because she seems to be continuously poked for blood samples to run many different tests. I can't even keep track of them all but I remember the Hepatic Function Panel which test the liver. All of Tori's test results so far have shown no issues... We also don't want the pain to just disappear without knowing what is causing it because we will be in the exact same position when it returns.

Tori's pneumonia appears to be almost completely gone according to the chest x-ray today and the fact she is on her last few days of antibiotics. Again, her blood cultures are still turning up negative for bacteria or growth as well. We are going to be tempted to plug her button trach again here within a few days to see how she handles it again. We can also probably start planning now for the Nissen Fundoplication.

Maria just informed me of the bad news of the day... Apparently Tori's NJ-Tube is now clogged and no medications or feed can be moved through it... They are trying some form of dissolver or acid now as a last ditch attempt to clear it again. If it doesn't work all of Tori's medications will be rewritten again to go through her G-Tube and into her stomach. Then they will have to place a new NJ-Tube once again... Isn't it time Tori catches a break of some sort here?!?! Talk about frustrating...

They did happen to get the Melatonin in Tori's system before the clog and she was given a Valium so hopefully Maria and Tori can still get a good night's sleep before tomorrows fun.

Thank you all once again,

Tim and Maria