Yesterday, the paperwork was started to send Avigayil home. This is going to be a tough journey. Unfortunately, home hospitalization will not mean that the store is behind us. It will just be a new chapter. She will not be able to leave the house, we will not even be able to take her from room to room.
We have already hit our first bureaucratic problem (a disagreement about who pays for her new, and wildly expensive machine), our first insurance problem (the ambulance ride home is not covered), and our first technical problem (how are we going to fit all this stuff in our room). We are working on solutions to all of them.
Meanwhile, all eyes are on us. Avigayil is the first preemie to be on this machine. We are the first from the NICU to be going on home hospitalization. If all works out well for us, there are already at least 3 other families on the waiting list to get similar treatment. In theory, this could be a great advancement for Neonatal medicine and for the parents of preemies. This can and most probably will mean that we will hit many problems since no one is really sure yet exactly how this will work. Hopefully, it will also mean that we will get lots of support since everyone is very motivated to make this work.
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