She needs to be able to breathe

Hannah hasn’t been herself the last few days, actually, more like the last couple of weeks.  I think part of it had to do with the stomach bug that I had that she probably caught, but she just hasn’t been the always smiling and happy baby lately. 

We had another hyperventilation episode on the way to see Dr. Schiffmann in Dallas.  Third one.  Again, it happened in the car.  I think it it was because she was hungry, and we just weren’t at a stopping place on the freeway.   I hate the term “foaming at the mouth,” but that is the best way to describe it.

Since then, I have noticed a definite change in her breathing situation.  Her hacking laugh has replaced the once adorable little giggle she once had.   When she cries, she starts to get out of breath much quicker. 

It is scaring me.

We are meeting with a new otolaryngologist, Dr. Soham Roy, on 8/31.  He was recommended by my pediatrician, and he isn’t even part of the TCH system (of which all of Hannah’s doctors but Dr. Schiffmann are a part).  One of his expertise areas is that of pediatric vocal cord issues.  We are also meeting with a pulmonologist on 9/9.  Hopefully between the two of them, we can get a handle on what is going on with Hannah’s vocal cords. 

Fortunately, the NIH team’s Beth Solomon said that she would also work with these doctors as well.  That gives us some comfort, as we had a great experience with Beth at the NIH with the laryngoscopy and swallow study.  She is very no-nonsense, and she doesn’t beat around the bush.

The “thing” is that if we didn’t have the vocal cord issues, the only serious disease-related processes that we would be dealing with would be her global developmental delays and her abnormal eye movements, neither of which are life threatening. 

The vocal cord issue?  Life threatening?  Seems like it very well could be.  She needs to be able to breathe.