02/25/10 Sleep Study Two

No real changes to report today. They are scheduled to do the second sleep study tonight. We're looking forward to getting some more information on how Eli is progressing.

The technician arrives to set up for the sleep study around 7:00pm. As she is getting set up I kick up a conversation by asking her how long they are going to test Eli on the high flow. She looks over her notes and says the orders weren't written to include high flow. This is another one of those "huh?" moments for me. I sit back and think about it for a little bit then I decide I better say something so I ask why we wouldn't be testing him on high flow. I thought the whole point in doing a second sleep study was to see how well Eli was being supported by the high flow system. I can understand wanting to look at how Eli does off respiratory support for a while to get a baseline for comparison back to the previous sleep study. If Eli has fewer episodes this time vs. last time then perhaps he is getting better. The technician agrees to start him off on regular nasal cannula at 3/4 liter of O2 and then she will proceed to high flow for a while.

This week has been pretty frustrating but it's also given us some hope. The frustration has come into play because we can't seem to get any answers out of the doctors and we are dealing with 5 different specialists to coordinate Eli's care. Somehow the coordination has fallen on us. It's supposed to fall on the attending physician on the floor but that hasn't really happened. The one positive concession we've managed to get is called a "care conference" and it's set up tomorrow afternoon. A "care conference" is called an inter-departmental meeting in the business world. In medical terms, we're getting all the specialists and pediatricians responsible for Eli's care in one room, to answer our questions, and for the purpose of review Eli's care plan. We've asked several times for a roadmap to get home and we're determined to hammer out a plan during the meeting.

We'll have to wait for tomorrow to see how things turn out.