Dr. Arteaga-Solis explained that he works internationally with cases of rare conditions. (So this is rare, ha). He had been in touch with the parents of a child in another country who also had TEF, and they didn’t know anyone else with this condition.
He asked if we would be willing to communicate with them. Of course we are thrilled to communicate with parents in a similar situation.
About an hour later – sooner than expected – Benjamin’s TEF surgeon came out.
Dr. Middlesworth explained that the first scope he sent down Benjamin’s esophagus – which was about the thickness of a stethoscope tube (or less)- would not pass through the narrowest part.
Part of the reason for the procedure was that Benjamin had a stricture – a narrowing that was not allowing much food to pass through.
They then sent a wire through the narrowing with a cylindrical balloon, and stretched the esophagus to widen it. It was less than 6 mm wide at the narrow point (about the thickness of a pencil), and they stretched it to 12 mm wide.
No wonder he could only eat applesauce, watered down purees and milk without any problems.
We had tried other things (including humus and veggie straws) that he either choked or couldn’t keep down.
Anyway we’re so thankful to be in a place where they could find these problems and correct them.
Dr. Middlesworth had also planned to do a biopsy to check how he was doing with acid reflux, but he decided it was too many procedures to do at once and wouldn’t change enough to make it worthwhile. We appreciated his consideration.
Side note – we really like Dr. Middlesworth. He is a gentle, grandfatherly type man, who is very considerate of us as parents. But he became even “cooler” in my mind when he was reviewing this last operation with us – first his cell phone went off and the ringtone was a barking dog, ha. Then he drew a picture on his scrubs pant leg to help us understand the difference between the LMA and the other scope they had used. We should’ve taken a picture of the drawing.
Did the procedures help?
When you’re considering sending your son under anesthesia, and all the risks that go along with putting tubes down his throat, obviously you want to know that the benefit is higher than the risk.
(Of course, once they realized he had a stricture, the procedure was no longer optional. Originally the plan was only to look at how he was doing, but they had to widen his esophagus for him to eat.)
An x-ray was done in the recovery room, which determined that there were no “full thickness injury” or esophageal perforations (tears that would need surgery to correct).
Last night, the day after Benjamin’s procedure, he ate some pureed spinach that was slightly chunkier than before- he ate a lot! And he ate it much faster! (Five seconds instead of fifteen seconds to get through one bite.)
Then, as usual, he started crying and grabbing for my food. We cut up some of the gluten-free noodles and let him try those. He did great! 🙂
I’m still nervous to give him too much at once, but we are now working him up to foods that are more chunky and solid.
Thanks so much for your prayers and encouragement.