We met with our new ENT at John Hopkins Children's Hospital today and I really like this team. For the first time we have a comprehensive team for children like her. We talked about Chantelle and her issues, symptoms and, the temporary relief she experienced after her laryngeal cleft was filled in Colorado. The relief lasted for a while but with the last few months she has been choking and gagging more with foods and liquids. According the the ENT this is consistent and normal with laryngeal children like her.
However, here at John Hopkins they use a shorter lasting repair. This puts the children in surgery every 3 months because if they wait 4 months the children are in trouble and having severe aspiration issues. The team here uses a comprehensive team approach and uses speech, feeding, GI, pulmonary, ENT, and other specialists to ensure all the needs of the child are met.
At this point Chantelle has been moved back to all tube feeds until further notice to allow for her lungs to heal. She has been on prednisone to many times and had bronchitis and to many lung issues from aspiration as well. Going back onto all tube feeds should allow for her lungs to heal, this in turn hopefully will also allow her to grow and gain weight better. Additionally they are going to run a full genetic testing panel to try and determine what exactly is causing her complex medical issues.
Also getting in with this team will get her pulmonary appointment moved up. Although better is this pulmonary specialist is one that deals specifically with children with laryngeal cleft and aspiration issues like her. While the other one is great with children, they feel this doctor will suite her needs better. Finally, with this team in place these doctors all meet regularly and know the kids and their needs.
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