Well it appears that we counted our chickens before they hatched, so we a bit down today. After talking with Nicholas's primary doctor here at Georgetown, we mistook the good information we were given yesterday. We did get good news, but rather than being good news that he has certain chromosomes that give a better than average prognosis, the real diagnosis was that the markers that have come back have been favorable and keeps him in a standard risk rather than putting him in a high risk category. We are still awaiting news on a third marker to confirm that he is not high risk. That information should be in by Friday. He did not meet markers to move him into low risk. Most kids don't meet those markers, hence the term standard risk, but we liked our interpretation of the news better and got our hopes up that the news meant low risk. It is still good that we aren't high risk (yet), but still a bit disappointed that it wasn't what we thought it meant, so we feel the loss.
On another note, we may not have to stay the whole month. We are nervous to bring him home and have to take on the sole responsibility for his care. So many things to monitor and medications to administer, but they won't kick us out until we are ready. He will be seen as an outpaitent at least three times per week, so we know he'll be getting quality care at least every other day. They have mentioned the possibility of home nursing care for a while, but you know no one wants to drive all the way to Poolesville! I know we can do it, but it is a lot to keep track of.
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