Home. Again but hopefully longer.

So, the doctors and nurses and coordinators arranged for me to be able to give Rebekah more than a half liter of oxygen at home, if necessary so that we can potentially stay out of the hospital except for clinic days. This is awesome because that is usually all the give her, as far as intervention goes, when she is in the hospital. They agree that, through observation, it seems like her hypothalamus does not always function properly which is what usually causes sudden fevers and an increased need for oxygen. They gave me very clear lines to say when she needs to be seen by a physician as well in case it is not the cause at any given time. I will also now have 24 hour access to a nurse to come to the house to evaluate her so that she doesn't have to be seen every time something happens. I think we have all finally arrived at the place where everyone agrees that home is where Rebekah does best.