Wednesday, October 12th - Day 115 Update

Hello everyone,

Tori and I spent our first night at the HSH Tuesday evening and it went much better than previous first nights at a new location. Tori slept from 11:00pm until 1:00am and went back to sleep at 2:00am after a valium. She then slept all the way in until 9:00am when Rhonda the PT therapist began her evaluation procedures. Tori slept so well that she didn't even wake up when they drew blood samples at 5:00am in the morning. I thought for sure we would be up at that point but thankfully I was mistaken :-)

Tori completed her swallowing study with the ST therapists around 11:30am this morning and the results were inconsistent. One of the main problems was that Tori really wanted to just take a nap at that point and wasn't too cooperative in the study. They gave her barium laced chocolate pudding and apple juice but Tori ended up swooshing it around a little in her mouth and swallowing incompletely twice. Using radiology they saw that her swallowing went the right direction and ended in her stomach but she didn't completely swallow everything in her mouth. They also tried to have her suck through a straw which didn't really work at all. So we are going to schedule another swallow study and we will try to catch her when she is fully awake.

Tori's button trach was plugged essentially for the entire day and she tolerated it well. Her vital statistics maintained adequate levels throughout the day. She now has to get used to coughing up her phlegm and swallowing it again and she was somewhat uncomfortable when doing this. It took some time for her to become comfortable the last time we tried this as well.

Tori spent about an hour today in her wheelchair and Maria took her outside for some fresh air. She actually had to wear the yellow gown on the way out as well so luckily there were no mirrors on the way out... ;-) Tonight Tori was also supposed to have her first bath in a while but since she is still under quarantine she could not use the large hot tub... She had to have a hand shower inside the tiny bathroom in her room instead. She didn't care for it much as she got cold after a while. We are greatly hoping to get some negative MRSA bacteria growth results tomorrow or Friday.

It also appears that Tori has a pin head sized hole in the GJ-Tube section on the outside of her stomach... This is typically caused by medications being pushed in too quickly. If they pushed in slowly the hole at least will NOT leak. We are going to try and just repair it tomorrow with superglue or some sort of silicone caulking. It better work!!...

Maria is staying at the HSH with Tori tonight and we should all wish her the best!!

Thank you all once again,

-Tim