After 48 hours, nothing bacterial is growing in Lucy’s blood cultures, which means she does not have a blood infection, which in turn means that we can go home! We are treating Lucy for bacterial overgrowth in her intestines…again. It appears that we are going to have to do 15 days on and 15 days off with the Flagyl in an effort to keep things under control. We are leaving knowing that we will follow up with Dr. R on Monday in regards to transfusion and blood pressure issues. Dr. M who was the on call doc this admit believes that Lucy’s issues are related to her autonomic dysfunction too, it is because of the mito. I asked him how long do we let her heart work so hard before we get concerned, he answered we are concerned and we will address her issues empirically.
We are waiting on our infusion company to deliver her supplies and then we are going home. Thank you for all your thoughts and prayers, we are so very grateful.