Well, MUSC sent us home without any help getting Ana to take fluids or formula. We got home around 9:00PM and Ana was still leaking everything from her J-tube site. I called her GI and he said to try again at 10PM and if she still leaked they would admit her in Savannah.... we did, and she still leaked... However, we couldn't take her to Savannah because Belle spiked a fever of 104! Today, Belle has a fever of 105.1 and Ana has bad tummy pains and a low grade fever. We are waiting for our PCP to call us back to get the girls tested for the flu.
Please pray this is NOT the flu! The flu can cause irriversible neuro problems in Ana, because of the mitochondrial disease. We are trying to stay positive, but this is not looking too good.
Ana has Oxidative Phosphorylation Complex I Defect. Ana's defect is a primary Mitochondrial Disease. Ana's only chance for a cure is through God. Please consider praying for Ana on a daily basis.
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