November 4, 2009: GI Appointment

Finally, finally, finally!! After months of waiting, Cohen’s appointment with the Pediatric Gastroenterologist was today. However, during the 4 months that our local hospital had to send the films from Cohen’s July BE exam, the messenger pigeon they use apparently got lost because the GI doc did not have the films for his appointment!! This, in all reality, made our trip a complete waste of time because he couldn’t give us a definitive answer. Talk about annoyed!! After examining Cohen and reading the report from the radiologist regarding the BE test, the GI doctor thinks a couple of things are going on. **Side note: These are just his guesses based on Cohen’s presenting symptoms and medical history, and not actually a diagnosis **

1. He either has a twist and a stricture, or just a stricture. A stricture is scar tissue in the intestine which builds up over time and will eventually cause a complete obstruction in the bowel. Because Cohen is eliminating, his intestine is not completely blocked…yet. Now, how in the world did he get scar tissue in his intestine you ask? Good question! Well, generally it is a complication from surgery to repair Necrotizing Entercolitis, or NEC. A NICU parent’s worst nightmare. NEC is death of intestinal tissue in one spot and if not caught soon enough can spread and eventually kill the baby. The worst part of NEC is that the symptoms occur when it is already underway. If miraculously caught early, a surgeon goes in and removes that section of the intestine which stops the NEC. A rare side effect of this surgery is this build up of scar tissue where the healthy intestines were sewn together. Now were does Cohen come into play here you ask? Cohen did not have NEC in the NICU…but he almost had NEC. (Which was new complete news to us, but it was in his medical records from the NICU) Apparently a spot was “almost” affected, meaning the lining in a section of his intestine (okay, pause, I guess ones large intestine is called the colon, so if go back and forth between the two terms, I’m really talking about the same organ) did slough off, but it did not become infected nor lead to full blown NEC. Talk about dodging a bullet. However, the slough left the wall of the intestine in that area weak and his body produced scar tissue to protect it. So this is how he might have developed a stricture without really having had the prerequisite surgery. The treatment for this is the same as for a twist, removing the effected section of bowel. So, that’s the bulk of it. We won’t know anything for sure until the films are reviewed and the lab tests completed. We will be sure to keep everyone posted of both.

The highlight of our trip to Sacred Heart was meeting up with Cohen’s favorite nurse, Kathy. If you remember, she was the one who pushed him to try new things and pretty much was the one who got Cohen moving towards home. We love her so much and are forever grateful for the care she gave Cohen. It was so much fun seeing her, and Cohen knew exactly who she was. He gave her a huge smile and went to her right away! Though we don’t miss our reason for being in the NICU, we do miss the people who became a very important part of our family….especially Kathy.