Well, today is decision weekend for me. Diana's busy at a wedding in CA and Monday morning the insurance company needs to know what decisions we have made for a private duty nursing agency so we can get the ball rolling.
I am mainly considering two agencies:
On one hand we have a Pediatric agency that has many cases in MD and the surrounding states and at least a few of those cases are with SMA families. They are your standard good agency and very nice. They feel confident they can staff our needs and are local. In fact, they staff another SMA family's need that we are aware if nearby. A less complicated case, but at least they know about SMA. This agency will most likely pull from the same pool of nurses we have already experienced - and that has been hit or miss with us. We are very picky and Emily requires talented and caring people.
On the other hand I have a high-class agency that hasn't dealt with Pediatrics, but they specialize in ventilated patients and Alzheimer's cases - and many of their nurses do have Peds experience. Why does this matter to me? Well, Emily has many of the needs of a ventilated patient - but requires "more" support b/c she isn't actually vented, but is dependent on BiPaP 14-16 hrs a day when well -- more when sick. She will stop breathing w/out it if falling into a deep sleep. -- Anyway, this agency mainly caters to the wealthier and older crowd, but after hearing Emily's case through an employee they said they'd be interested in working with us. My main concern is the fact that they haven't had to staff any Peds cases, so would we have to deal with a learning experience that we don't want to, or can't afford? They sound great and b/c they cater to "pay out of pocket" people they have a very high standard for nurses that they employ.
Tough decision b/c I enjoy the familiarity of the Peds agency, but am enticed by the stature and professionalism of the private agency. What to do.....