Home, for now!

So, they let us out yesterday and we got on the road around 2. Got home, only to find no heat in our house, a chilly 55. Really? This week hasn't been wild enough? Luckily, Micah's room has electric heat, and we have a small electric space heater. ENT asked yesterday that we come back Friday to check on how things are going. He was nice enough to call us and check in this morning.
When they pulled the drain (which was no worse than a shot) the site closed up within an hour. Unfortunately that means the fluid is pooling up again. Just in the last few days I've realized how ENDLESS this disease is. I know, in theory the trach should come out eventually but I just can't see how it's going to happen. We're debating when to do the next surgery, the surgeon was aiming for 3-6 months (dead summer). So it'll either have to be mid may or after labor day. It looks like we're going to have some jaw surgery to remove scar tissue that limits the opening of his mouth severely, or at least that's what we think is happening.
And so it goes...