Well I got to meet with Dr, Pham just before lunch and got the low down on how things are going with Riley. On the good side all of the cultures have come back negative, so this is definitely something viral. I asked (again) what we should be doing at home to help prevent some of these illnesses other than what we are currently doing ... washing hand, using Lysol, wearing masks around her when we don't feel well, etc. Dr. Pham said that what we are doing is good, but that often virus' are contagious even before the fist symptom make an appearance. Dr. Pham will be touching base with our Immunologist, Dr. Kobrinsky to see if we should have Riley's T-cell's checked again and with Cardiology to see what their input is for Riley's case. The biggest thing is that we need to keep clearing Riley's nasal passage to keep it clear for her to be able to breath. I asked at what point she'll be able to mouth breath, and the doctor told me between 6 and 8 months, so hopefully she'll be doing that soon.
Dr. Pham said that she would expect our periods at home to be longer and longer between hospital visits and time in the hospital to be shorter and shorter. From what she said and from what other parents in the support groups I have found said, this first year is the very worst. Not that I want to rush Riley's babyhood because it is so precious, but I will be so grateful to get through these first 12 months or so.
Our immediate goal is to get Riley off the high-flow cannula. After that we will no longer be considered critical and we can move out of the PICU either to a regular patient room, or to the Cardiac Step-down Unit, depending on what the Cardiologist thinks. Personally I'd rather go to the Step-down Unit, only because I am familiar with it and know the drill there. Maybe we'd even know the nurses on duty too.
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