Ava finally got discharged yesterday. We learned what Red Man Syndrome is and that was interesting. It took a few tries to wean dextrose while on feeds, but she finally managed to maintain blood sugar levels. Got her GJ tube switched out. She’s lost about 4 pounds so her tube size is now 1.5 instead of 2. Ten days of Vanco and Zosyn. Her hemoglobin dropped and her CRP was elevated. She leaves us all confused. Her labs were off.
Her Genetics doctor asked for permission to present her case at the American Acadamy of Genetics meeting. Ava has more going on than just ETC – complex 1 (Mito). She has something else too. Endo is calling NIH and Mayo clinic for some ideas. Ava is a puzzle.