Going home

Most likely today, and if not...definitely tomorrow. Woo!

We're back on the general pediatrics floor here at UVA. It made us nervous to leave the PICU since they monitor much more closely (and would have caught the whole kidney failure thing that the floor docs neglected to catch), but things have been rolling fine. We asked to stay in the PICU and they agreed if they didn't need the bed space. Well this was on the 4th of July. And guess what happens on the 4th of July? People blow their hands off with firecrackers. And not just people, but kids. So they had multiple traumas come in and we were bumped. Oh well. We got bumped back to a private room, so we can't complain.

Molly is still eating better than she ever has. But it just hasn't been as much as the nutritionists want her to eat. So we're going home with an ng tube (feeding tube through her nose and down into her stomach). We'll be bottle feeding her during the day (count those fucking calories!) and whatever she doesn't take will get put down the tube at night. We hope this is only temporary as Molly has been eating 80-90% of what they want her to eat. We're hoping that last 10-20% will come once she's back home and less stressed out by general hospital antics. We hear this is often the case. But in the meantime we don't have to worry about her not getting enough nutrition to heal and play catch-up growth. She's still only 8 1/2 pounds, so every bit helps.

If we go home today or tomorrow depends on how fast we learn how to put the ng tube in. I tried yesterday and it's not as easy as you would think. Turns out that hole at the back of the nose is hard to locate. Round 2, though, is in a few minutes. It's sad because she clearly hates it, but it's not as sad as when we had to give her the lovanox shots for her blood clot. So the methods that UVA sends us home with to torture our daughter are getting less and less severe.

Otherwise she's still doing great. Smiles at everyone who comes in (until they try to touch her), has discovered her feet and has no major organs failing anymore besides her heart (though the surgery we're here for seems to show promise for that too!). Win? We'll take it.