Thursday, September 8th - Day 81 Update

Good evening,

Tori slept all Wednesday night and for much of the day today. She was awake for brief periods of time throughout the day. Even when she is up, she is really calm and resting as her heart rate still maintains a range of 85-95 and her breathing rate stays steady between 15-25 breathes per minute. She isn't moving much at all as she is using all of her resources to battle the pneumonia. She did get occasional high temperatures today which were resolved by administering Motrin.

The blood cultures taken Monday night are still negative for any growths and the lung cultures were actually positive for the Pseudomonas aeruginosa family of bacteria. The specific bacteria is not identified yet but the antibiotic Clindamycin is supposed to counter any bacteria in the Pseudomonas aeruginosa family. Tori continues to cough up some very green and thick Phlegm and it is amazing how much her blood oxygen levels immediately recover after she rids herself of the phlegm.

After speaking with several CMU doctors and GI doctors today we decided to remove the GJ-Tube and replace it with a single G-Tube to Tori's stomach and run an NJ-Tube through Tori's nose into her small intestine. The NJ-Tube will be used for feeding and the G-Tube for medications and stomach venting and draining. Placing the NJ-Tube is far, far easier than a GJ-Tube and the radiologist completed it within 10 minutes. This time the NJ-Tube was ran completely through her entire small intestine and the x-ray looked like the tube was tied into a fisherman's knot because it ran and twisted all over the place. There must be 5 to 6 feet of tube inside of her and again, it is ran to the very end of the small intestine so HOPEFULLY it will not be coming back up any time soon...

We decided not to do the GJ-Tube placement today because the risk is too high that it will just move back up. We have made the decision for Tori to have a Nissen Fundoplication which a surgical procedure that prevents acid reflux or more pointedly vomiting. The GI surgeons agree with this decision because we just have to prevent any further aspirations because each time one occurs Tori is in great risk for a pneumonia. The surgery has no other real side effects and Tori will be able to start getting feeds through her G-Tube into her stomach because she can't vomit. We can be more aggressive with her feeds and fatten her up much quicker this way. The procedure has not been scheduled yet because apparently Tori cannot have any anesthesia due to her pneumonia. One surgeon believed a 6 week wait is needed but I'm getting additional opinions tomorrow. We don't really want to wait 6 weeks for this...

After the Nissen procedure and with any, any luck we will not even need to have a GJ-Tube anymore. Tori still must demonstrate she can process feeds in her stomach and hopefully it will happen. But we have to get there first to begin testing this. Anyway, Tori is now at least getting feeds again through the new NJ-Tube and we are so happy. Much of Tori's pain stems from the fact she has no food in her and we all know how painful that hungry feeling can eventually become when we don't eat...

Maria is spending the night with Tori tonight and I'm hoping they both sleep very well. Tomorrows goal is to speak with more GI surgeons and get the Nissen procedure scheduled. We would really, really like to do it within a few days so Tori does not have to be moved back to Health South again... We shall see.

Thank you everyone and until tomorrow,

-Tim and Maria