Sorry for the lack of updates, but the laptop is out of commission. So until we get it taken care of we are now limited to only updating from home, which is rare, but we will make every effort to do so. We’ve said it before this helps us stay organized as much as it helps everyone keep up to date.
Not too much has happened the last few days. They are continuing the windows off the Si Pap and Elias continues to do well. This weekend we are trying the Passy-Muir valve again. They are still having to use the one we had modified a few weeks ago with 2 holes because the pressure is too high otherwise. That demonstrates the lack of change in Elias airway as we continue to be reminded over and over. However that is also a source of confusion and internal struggle for us. Three or Four weeks ago we were told Elias airway was not safe enough to let him go home. Now the plan could potentially be to have him off Si Pap before we go home. Two things here. First off it is a bit of a paradox for us to be confused and concerned. We would love nothing more than to have Elias home without any mechanical intervention, but if the airway has not changed then why is the opinion about his airway safety? This is the problem with a learning hospital and rotating attendings. Every doctor has their own opinions, experiences, and methods. However Elias needs consistent and practical. We just do not know what we should believe or how to feel. It is very confusing and when we ask them about this we are not phrasing it in a way they can understand because they do not get it. We are working on that!