02/22/10 Some Good News

Eli's Prader Willi test is back and the result is negative. Patricia and I are breathing a little easier tonight but we still have to worry about Menke's. Eli is gaining weight and he is getting used to the high flow nasal cannula but he's also sleeping a lot lately.

We're getting a little frustrated with the floor staff at this point too. We haven't seen anyone in a while and the attending hasn't stopped by lately. In fact they did Rounds on Eli this morning without Patricia. She was ticked. So much so that she laid into the doctors a little this afternoon. I think she got the point across. We're active parents and we want to be engaged in Eli's care.

In the evening one of the younger doctors comes in to speak with me while I'm hanging out with Eli. I don't think they want a repeat dose of "mean Patricia". He asks me if I have any questions. Well now that you mention it, yeah I have a few. He is less than helpful. I politely ask to talk to the attending and he runs out to give the guy a call.

When I get my chance to talk to the attending I ask a few questions but my driving point is this, I want a "road map" to Eli's care. Yeah it's a business thing but these doctors need to speak to us in terms we can understand. I want to know what the next steps are for Eli. If there are decisions to be made I want to know what the possible outcomes are going to be and where that leads us down the road. I want to know what tests and labs we have outstanding and when we are expecting them to come back so we can follow along and above all else, I want a road map showing us how we can bring our little boy home. I'm not sure if I'm getting my point across to the doctors but I'm going to keep hammering home the message until someone starts giving us the information we're looking for.

At the end of the day I haven't gotten very far. I guess the bus isn't going down the road tonight. About the only thing I get out of tonight's interactions with the staff is they're going to repeat the sleep study with Eli on the high flow to see how it's impacting his apnea. They are going to repeat the sleep study on Wednesday. I can wait a couple days but we better start thinking in proactive terms or I'll unleash "mean Patricia" on them again.