Tuesday, September 13th - Day 86 Update

Good evening,

The clogged NJ-Tube I mentioned last night may have turned out to be a blessing after all!! Since it was clogged nothing could flow through it and Maria noticed some very positive behavior changes in Tori during this time. For one, Tori actually slept all night for Maria!! And that is a miracle in itself!! :-) In the morning, Tori's frequent, painful winces and grimaces all but disappeared!! Tori remained in this pleasant state until they placed her NJ-Tube again around noon today and even after that she was improved over previous days. Remember, we DO need her to eat so we have to have the NJ-Tube until she can hold down feeds in her stomach. And we will not attempt a stomach feed until the Nissen surgery is completed.

When they placed the new NJ-Tube today we asked them NOT to go all the way to the end of the small intestine as before. This is just another test to see if the discomfort is based on the placement of the NJ-Tube. Taking food directly into the small intestine is obviously NOT natural to your body and could cause issues. But we know Tori was handling the feeds fine through the NJ-Tube prior to coming the PCMC again. So our next test is to switch her feed back to what we were using at HSH but unfortunately they do not have the same brand here... So instead we are going way back to the Vanilla flavored Nestle Peptamen Junior brand she had in the PICU instead of the Ross Jevity brand she has been getting since she came to the CMU. Maybe Tori just likes the Vanilla better?!?! ;-) We don't really know if the feed type is the issue but we are willing to try ANYTHING to remove her pain!! And we ARE trying everything!! :-)

During the stomach x-rays today when they checked the placement on Tori's new NJ-Tube they used a Barium Meal to watch the entire process of Tori's digestive system. The results were very interesting and actually indicated some hardened stool deposits causing blockage in her large intestine. So Tori had to have an enema this afternoon which totally, and I mean totally, cleaned out her system... You could visually tell that she just felt MUCH better afterward. She was just calm, awake and aware while just taking everything in her surroundings in. Maybe, just maybe, we are finally making some progress with everything we are trying to do for Tori. Wouldn't that be great!?!? We can hardly wait until tomorrow to see how Tori does!!

With this positive progress and her pneumonia just about entirely gone, we are going to try and at least schedule the Nissen tomorrow. We shall see. The quicker we do it, the quicker we can begin to feed Tori in her stomach. Or at least try to anyway... We can feed Tori MUCH larger amounts of food into her stomach and we greatly need to be able to do this to fatten that girl up again!! :-) Again, getting that weight back on her will help eliminate the digestive issues as well. We believe the combination of ALL of the issues I've mentioned are causing the pain and discomfort for Tori.

Tori had the same type of aggressive and extended physical therapy today as she did yesterday. We are definitely making progress and we are focused on her arms and hands and the arching in her lower back. It is very possible that the lower back arching is also causing some of the digestive issues because it creates pressure on the small intestine and could cause the spasming we always see when placing a J-Tube. Again, or goal is to fix this as well and eliminate one more potential issue.

It seemed we had yet another NJ-Tube clog earlier tonight but luckily the hot water flush worked this time!! WHEW!! We will now ask and inform each shift nurse to very quickly flush after each medication is given. Tori doesn't particularly like that NJ-Tube placement procedure and neither do we... We need to avoid it if at all possible. Alright, Tori had her Melatonin and Benedryl at 8:30pm tonight and she was sleeping by 9:00pm!! It's time for me to get some rest now.

Thank you for all of your prayers and support!!

-Tim