It has been so incredibly busy for the past two days, and the next two days are just as busy! Taking care of Hannah and her appointments/therapies really has become a full-time job lately. Leaving the house in the morning and getting home MINUTES before Ethan and Abigail’s bus gets here from school.
Anyway, we met with the pulmonologist, Dr. Timothy Vece, regarding Hannah’s breathing situation. He agrees with Dr. Roy (ENT) and the NIH team that her breathing issues is caused by a combination of her vocal cord paresis and her laryngomalacia. Her pulse ox was at 100%. She had a crying episode during this visit, and he was able to listen to her lungs during it. Her lungs sounded clear.
He wants to take a look at the CT Chest scan done at the NIH that documented interstitial lung disease with no clinical findings and follow up on that end of things.
But other than that, he just wants to follow up with us in 6 months — sooner if something should come up. But her lungs look clear for now! No clinical Gaucher disease involvement, which is great news, because some neuronopathic Gaucher kids can have moderate to severe involvement of Gaucher disease in the lungs.
Finally, something (the lungs) we can just not worry about for now 🙂
That is good that he was able to check her all out and find no problems in the lungs. 🙂