On Wednesday this week Asher had an appointment with pediatric pulmonology at the University of New Mexico. It was a very emotional and informative appointment. The pulmonologist spent an hour reviewing his medical history, asking questions, and looking through his records. She asked questions that no one else has asked up until this point. When it was time to make a plan she said, "I have two very large concerns". She said that, without a doubt, Asher has reflux and that may be what has caused all of his symptoms. But, the duration and severity of symptoms, along with some other pieces from his medical history, raised big red flags for her. She said that she strongly suspects he has a structural problem with his throat and that additional tests are needed to rule that out. The thing that jumped at at her most was a laryngotracheal cleft, which can be seen on a rigid scope done under full anesthesia. The bleeding while coughing was her second big concern, and she wants to be sure he doesn't have a fistula, an infection in the lower lobe of his lungs, or that he aspirated on a solid object at some point that is still in his lungs. She wants to do a lower lung scope (also under full anesthesia) to make sure none of those things are going on. And finally, she wanted Asher to have a FEES test done by a speech pathologist, which will involve a camera being threaded up his nose and down his throat (while awake) and then having Ash eat and drink to see how his vocal cords react. So far this is the only procedure that has been scheduled, and will take place this Wednesday (the day after his birthday). We have decided to have the two procedures that require anesthesia done here in New Mexico. We had a flexible scope scheduled at the University of Minnesota, but learned that they don't use sedation or anesthesia for flex or rigid scopes (which seems like it would be very traumatic for Asher). When we have our peds ENT and pulmonology appointments at the U, they will be for second opinions only... no diagnostics. I'm hoping to hear back from the scheduling folks about when his two procedures will take place (the pulmonologist and a peds ENT will do them at the same time so he only needs to go under once).
Ben and I are hoping that these tests show nothing wrong and that this can be the end of Asher's health saga. But we will see.
Until then, we are just trying to relax and focus on the fact that Asher is a beautiful, happy little boy-- who turns 1 in three days!
I dare you to judge me for my recent Target purchase... double dare. :)
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