Todays appt was pretty low key. She gained 1/2 lb from 2 weeks ago and didn't grow any length so not sure how effective the added calories is. She now has a cough, but the doctor didn't seem too concerned. She is already getting the proper dose of lasix and with the slow growth the doctor doesn't think she will outgrow it anytime soon.
Still haven't heard from Boston about when she can have surgery. The doctor said he has been hoarding them everyday, but that the stuff has been sitting in the mail room for the last number of days and no one has transported it from the basement to the cardiology department on the 7th floor.
He made another followup in a month's time, but hopefully she will be going to Boston before that. He said he originally wanted her to be done in April, and well who knows if that will happen now that April is half over.
We were also warned about keeping her out of public since if she ever got sick it could be very bad since she already breathes fast as is. So looks like it will be a long time before we can go back to church or other public places.
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