Here is the text I got from Gannon’s surgery nurse. P is for Paul and he’s very nice.
Everyone is so great here. It’s a wonderful experience.
I showed Dr. Sood the picture from last night when you could see his bowels just under his skin and he said that is not normal and he expects to find a diagnosis with the tests today.
Gannon got more versed (relaxant) on his way back to the OR and I got to see his smile and hear his giggle for the first time since yesterday morning.
He is back right now getting a colonoscopy, an endoscopy (upper GI scope), biopsies, a Pena stimulation test and manometry wire placement.
It was a tough night with even more enemas, replacing his NG tube again, another X-ray, so so many blow outs.
We had to attempt to replace the NG tube probably 5 or 6 times. We don’t even know how it got out. The nurse and I were talking one minute and we looked at him after he gagged and it was out.
It was a terrible 45 minutes. It just would not go down and would coil out through his mouth. We ended up having to squirt water in his mouth while holding him down and placing the NG through the nose so that he would swallow the tube and it would go in the stomach. If it didn’t work (which happens) he would cough and gag and sputter and we would have to start all over.
He was screaming so hard and couldn’t relax during the enemas that the water wouldn’t go in. Every time we laid him flat he would scream because he thought he was getting another enema. It was TERRIBLE.
I’m exhausted. I’m eating my omelet in the waiting room with all the other nervous parents. I feel like you can just look at someone and tell if they are a parent of a child here or not, we all have that’s same tired, anxious look.
We might be released today, we might not be. We will see what the tests show. I know we will be here until at least 4 pm. Gannon will have a tube out of his mouth and a tube out of his bum. The wires loop through his bowels and see how his bowels work. He has to be hooked up to the machine for several hours – at least until 4.
Here’s a video about manometry, I know is is a hard concept to wrap your head around.
Anyway, that’s what I know. I’ll update when I can. Thanks for reading. If you missed yesterday’s post about Day 1 in Milwaukee, read more here: