Finally Updating

Well so much has happened since my last update…

During the Feeding Tube Awareness Week we had our world turned upside down when our daughter was once again placed on 100% tube feeds due to aspiration issues. Since then we had our appointment with the ENT, Pulmonary, GI, Swallowing, Nutrition… team that specializes in children like Ellie, children with Laryngeal cleft and malacia issues. First off just discovering there is a group of doctors that deals with others was comforting in a way I can’t explain. Finally, she is not alone in her cluster of diagnosis issues.

We talked in depth about her birth history, prior hospitalizations, surgeries, biopsies, eating patterns, sickness patterns, repeated bronchitis and pneumonias, prednisone scripts, so many different things. While one dr was talking to me another talking with her about how she gets sick, how her lungs feel when she gets sick, how she eats, what happens when eats, what foods does she choke on and how it feels.

Then the dreaded part of the appointment for her, a nasal scope while eating and drinking. The surprise here was how swollen her throat is around the vocal cords. The dr’s saw an indication of the laryngeal malacia still present. What is confusing is why her reflux meds are not working if this is the cause of her swelling and throat inflammation. Everything was also very red.

During this appointment they also brought up a new possible cause for many of her issues, Eosinophilic Esophagitis or EE. We talked about getting her scheduled for the OR asap to get her cleft surgically repaired as we know this is a serious issue for her and has caused her severe issues for her lungs. During this OR trip they are doing both bronch’s again, hard and soft to look for signs of malacia, bronchial, tracheal, or laryngeal forms. At one point she had all 3 in addition to subglottic stenosis. They are also going to take a good look inside her lungs again to see if she is growing anything in there, take biopsies of her esophagus to test for EE and other EE related issues. At this point I forget what else they talked about.