Home

I think we are going home today. I want to draw all sorts of happy faces about this news, but it's not completely joyful.

I say this often, but it is always true. I have never brought a well child home from the hospital. Emily is better, but far away from well. She still has not gained weight, and actually she's lost to a frightening level. No surprise she didn't tolerate canola oil directly in her intestines. That still sounds nasty to me. We had a horrible 2 days with lots of crying (her and me), and I finally refused it. She finally felt better yesterday. They replaced the oil with micro-lipids, which are broken down fats made for the tube. So far (10 hours) she is tolerating this well.

There is no good explanation for why a child who tolerates full feeds isn't gaining weight. It is frustrating for her entire team. Yesterday, we decided it was time to go home, weight gain or not. The only snag could be weight loss again today. That could keep us here. Otherwise, I think it's best to get her in her own environment and work with her there.

She can not get sick at this weight. She is so tiny that she can't lose any more. If she doesn't put significant weight on in four weeks, she won't be able to start school because of infection risk. If anything happens at this point, they will start TPN. That makes me very uneasy. Yesterday, all of this if/then talk was more than I could take. I had tear-filled conversations with every poor soul that walked through the door. Poor medical staff :/. She is obviously exposed to lots of germs here in the hospital, which is my main incentive for begging them to let her go.

Please pray for her, and us we take on the huge task of getting this girl healthy again. She has so far to go. I hope I can post pictures from home soon!