Ana was seen by the surgeon on Tuesday and he was pretty confused about the leaking. I know in my heart that it is her motility failing. We are trying to get her back to Boston, so the appropriate tests can be run. Tuesday Dr. S did contrast studies of the G & J tubes and they did not see an obstruction as suspected. Ana eats less each day and has began to feel nauseated with the formula going into her stomach, so we are back to J-tube feeds at the moment. This morning I have slowed her rate in an effort to control the leaking. She woke up at 5AM because her clothes and bed were soaked with formula. We are desperate for prayers today... we so badly don't want her small intestine to stop functioning. Also pray about the Nerve Conduction Study/EMG that she will have today. I have heard from several people that this is not a fun test and I am scared for Ana. The test begins at 2PM, so consider lifting her in prayer at that time. On a positive note, the wheelchair is in and we pick it up on Monday!
You can read about these studies at:
http://www.webmd.com/brain/electromyogram-emg-and-nerve-conduction-studies
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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