Ethan got a wagon ride for Christmas. Unfortunately it wasn't a ride home. It was, however, the first time he has been out of his room!! (The trips in the transporter don't count because he was asleep and couldn't see around.) He seemed to like the ride and was looking all around. We were able to practice connecting him to the portable oxygen tank, so that was good.
Ethan has had quite a few changes in meds and food in the past few days, and he just hasn't stabilized quite enough to come home. His co2 was 91 this morning, so that is better. If it stays down we may have him home by Sunday, but it's hard to say for sure. He looks comfortable and doesn't seem to be working much to breathe, but his lungs are more crackly. He got some extra lasix and we're going back to steroids every day. The part that is difficult for us is that he seems to have developed reflux, so he cries every time he eats. It is so sad to see him cry when he loves eating so much. He threw up all over the place during our wagon ride. Stupid 30 calorie milk and tons of meds. They changed his milk to half breastmilk and half similac concentrate. He took two sips and turned away. Hopefully he'll learn to like the new formula. He has not been interested in nursing at all, perhaps because he has been working harder with his high co2's. Hopefully this will all be straightened out soon. It's almost harder when you can see (and not quite reach) the light at the end of the tunnel.
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