Need Swallow Study

[Jake'sMom]

http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif My son, Jake, is 14 mos. old. He has had a trach since he was 1 mo. He had tracheamalacia. He had a bronch done in January which showed his airway is now developed. He had surgery last week to remove a granuloma near his trach site. We were planning to decanulate in the weeks following the granuloma removal. Now, his ENT wants to do an OPM swallow study since Jake is still aspirating and not swallowing correctly. He is being fed with g-tube. Anyone else in this situation? I remember reading a post not too long ago about a feeding clinic someone went to and how successful they were in resolving the feeding/swallowing issue. Any idea how long of a delay we're looking at? We're heartbroken. We thought decanulation was right around the corner.

[Jake'sMom]

If you go to page 10 on the "Kids with Trachs" page, you will be able to read about Jake. He's been g-tube fed, but we were told it's was okay to give him "tastes." We were dipping his pacifier in baby food and he was doing pretty well -- however, there were times when we'd suction out color, so we know he was sometimes aspirating and we'd stop for the day. It seems to be happening more lately than before and sooner rather than later. He has a swallow study scheduled for next week (March 21st). In the past OPMs, he'd swallow, but not all of the formula went down where it needed to. Some of it would pool in the back of his throat. After a few good swallows, the stuff that was pooling in the back would spill down the wrong way into his trachea and he'd silently aspirate. They say that he seems to tire easy. However, he very much wants to eat. It's to the point that we cannot eat in front of him. It's heartbreakening. It sounds like this will delay the removal of his trach, but I wondering by how much. It was encouraging to learn that your child was able to master eating in 6 weeks. I can live with that delay, I'm just terrified that they're going to find something else wrong... http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif We'll be going to the Children's Hospital of Wisconsin for the test. Our ENT (Kerschner) is trying to get a swallowing expert (Joan Arbedson sp?) to be there for the study.