If you would have asked us a year ago anything about a trachea, esophagus, ECMO, breathing tubes etc we would have not know very much. It is scary how much information we have absorbed in a short amount of time. Madi has been doing fantastic! She has kept us very busy in February so far. There were a couple days she had scheduled appointments, normally several each day, and she pulled her J tube out of her intestine and had to go to the emergency room to have it put back in one day. You know your daughter has spent way to much time in the hospital when the ER nurse says, “Is this Madi that spent a lot of time in the PICU, I have heard a lot about her.” Madi is still weaning down on her medications. Continue reading »