Jamie just got a call back from the ENT.
The diagnosis is that Ella does have tracheomalacia (the wall of the trachea is soft, instead of hard cartilage). It is an area 2cm in length that is about 3cm below her vocal cords that is collapsing when she breathes. The ENT said that he has diagnosed this before, but it is rare, so he does not treat it. He is going to do some research on who he should send us to (pediatric thoracic surgeon, or another ENT that specializes in airway issues). If it was only the noise, he would have suggested we just wait and see if she grows out of it, but given what happened during the sedation for the MRI, he thinks we should talk to someone more specialized to decide what (if anything) to do. He also recommends that we talk to this person before re-scheduling the MRI, although he did say since the soft area was so close to her vocal cords that when they intubate her for the general anesthesia, it should be safe and support her airway open.
He should be able to let us know by Monday who to go see. I'm also putting in a call with the pediatrician to go over this information. I want to let her know what is going on, and discuss if she feels the MRI is still the best way to proceed to rule out hydrocephalus/"water on the brain."
Thanks for continued prayers!
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