This is the story of our daughter, Emily Marie. Emily was first diagnosed with interstital lung disease after she suffered respiratory failure with diffuse alveolar damage as a newborn, but she now has lung damage more consistent with another form of interstitial lung disease, bronchiolitis obliterans.
Tuesday, April 13, 2010
Update on Appointment with Liver Specialist
Emily had her appointment in Cincinnati today with the liver specialist. The good news is that her liver is smaller than it was Friday, although it is still enlarged. Her weight is also down to 47 pounds. They think she is going in the right direction. They don't think this is caused by a disease, although they are doing tests just to be sure. The ultrasound and doppler were good, showing no blockages. They did a lot of labs just to make sure things are going to be alright, including alpha 1 antitrypsin....I don't know how long the labs will take, but they will call with results. They have a few ideas about what could be going on....a weird reaction Emily's body had to some virus or some medicine, or that she drank too much milk washing too much protein out of her intestines (Emily loves milk). At any rate, it has been a very frightening few weeks, and we are going to work hard to get her body back to normal. We are to limit her milk consumption (which is the exact oposite of what the nutritionist reccomended for her in October), and also we are holding all meds except Advair for now. No need to overwork the liver if it isn't absolutely necessary. And no sports of any kind for at least another week. And as for the question of could this have been caused by her sports and activity, the answer is no....they said she would be in SEVERE pain if that were the case, and she is not. This is just something weird that happened, and we hope it is something we can get under control and will never happen again. So all in all, a pretty good day!!!
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