Not What We Expected

Today Toby is going to have a CT scan. They also are planning on having Toby on a ventilator while he's sleeping, and on the mist collar when he's awake. They are going to switch him to a home vent. This doesn't mean he's going home, I just think it's one similar to what he would use at home to see how he tolerates it because can be different. After they see how he does with the vent., then they will try bolus feeds again. No results yet from the sleep study, but it seems he is going to need a vent when he sleeps as a result of the apnea. I don't know if he can grow out of this or not; I need to ask, and even then they may not know either. Bruce and I practiced changing out the trach and trach ties today on a dummy. When they switch him over to the home vent they will also begin training us on that. It will probably still be at least 2 more weeks before he can come home (it might take that long to have insurance approve and supply a home ventilator). It's not what we would have wanted, but we're okay with it. God is giving us joy, and we're enjoying our sweet baby boy.