A New Approach

Well, we’re back in one of our absolute favorite places: the hospital. Ugh. We couldn’t get Evie off oxygen yesterday morning and her lungs were in the beginning stages of sounding bad. Her bloodwork shows that she is fighting something off, but they’re less inclined to believe it’s a bacterial infection again. They took some special labs last night that seemed to confirm that. We’ll redo them again this morning to see if they get worse with no antibiotics.

She came back positive for rhinovirus (common cold), but the doctors think this is more that she has inflammation from the mucus she is aspirating (swallowing into her lungs). We know she’s been aspirating since the jaw distraction, but I think the stuff in her lungs has just been compounding. They want us to get a Vest to help clear her lungs at home. I’m learning from other CHARGE parents that many of their kids are basically treated like kids with cystic fibrosis. CHARGErs tend to aspirate so badly that they have tons of mucus just like in CF.


If her bloodwork look good this morning then we’ll get to head home. Hopefully we’ve figured out how to deal with this issue and we can keep her lungs healthy and clear at home!


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