Most of you that follow this blog have probably seen a picture of Brooklyn’s “button” at least from the OUTSIDE. Yesterday I had the rare opportunity to see what her AMT Mini One g-tube looks like from the INSIDE!
The good thing is the GI said that the placement looks good! One of the possible options for the reflux issues was improper placement of the button. Not the case!
(and I apologize if this picture makes any of you squeamish I decided to not post the other six photos that I have from her endoscopy yesterday for that very reason!
I thought I should blog and update from yesterday. First – I have to say I finally LOVE a GI doctor ;)
I was allowed back in the surgical room for the procedure, doc let me hold her hand until she fell asleep. They drew the blood for labs AFTER she was asleep so as to no upset her. Then, as the procedure started she talked us through EVERYTHING we were seeing on the screen.
Her esophagus LOOKED AWESOME – no redness, no bumps, erosion, or ulcers! I was terrified to see how bad it was. Her stomach had some redness/ulcer like bumps along the bottom and then when she went down into the small intestine there was a blockage (pushing in from the outside) in the duodenum.
Her best educated guess right now is that the SMA (Superior Mesenteric Artery) is pushing into the small intestine. The SMA/small intestine/spine are all in line and MOST people have extra fat that cushions between all three – my skinny mini does not have that. so….she thinks that this protruding in. Which is turn is causing a blockage (which at times is causing the formula to back up into her stomach and then even into her esophagus at times) Turns out it was a good thing I went against the old GI suggestion to do a Fundoplication (which is a procedure often done with kiddos with G-tubes that have reflux) because in Brookie’s case this would have made her worse! Sometimes mama DOES know best (and I am ok ticking of a GI and Pulmonologist when I have doubts about the way they want to treat my daughter)!!
She did three biopsies, and draw labs so we need to see what (if anything) those show and she would like to do a CT with contrast to see what exactly is happening during feedings – BUT ideally a few extra pounds might make a dramatic difference with Brookie! More to come but am so so happy to be down at Payton Manning Children’s for our GI care now!!!