Scattered doesn't even begin to describe my brain tonight. It must be the weather! :)

Today was one of those days that seems like we are getting nowhere. We had heard that TPN (Total Parenteral Nutrition)--the stuff Carter gets by IV can cause severe liver damage. I asked about it, and yes, that is true. The doctor said that although it can cause damage, there is no alternative and Carter needs it right now. He hopes to wane the amount by next week. That sounds to me like we are not taking our little boy home anytime soon.

Dr. Schropp stopped by today to see Carter, and he was "ecstatic about his progress!" He says his coloring is great, and his total bilirubin has gone down. It is now 5.8. This is down from 11.4 a week and a half ago! There are still some other numbers that are high, but as his liver begins to heal (which is possible but not guaranteed) they should come down as well. He also still has a great deal of fluid draining from his abdomen. Generally about 60-90 mL per 3 hours, or 2-3 ounces, which is more than he is eating. That means he has to have replacement fluids. Dr. Schropp says it is possible he could go home with the drain, but he would have to keep the central IV in so we could give him fluids 3 times a day. Ugh.

Plus, I'm becoming an overprotective mother. I'm trying not to, but I'm so picky about his care and how certain things are done. He hadn't been given a bath since he'd been there, for example, although I'd asked about it several times. Finally, tonight, I got to give him one. But the nurse kept hurrying me, so he didn't really get clean. I was frustrated.

There were many amazingly wonderful moments today, however, and I leave you with these: I sat on the floor while Carter sat in a little swing and we talked and sang most of the afternoon (in between cat naps, of course); our day nurse lives in between Lathrop and Lawson and her son goes to Lathrop, so we had much to talk about, which made the day go fast; Carter is more alert all the time--he has longer periods where he seems to feel good and want to interact; my friend's little girl gets to go home tomorrow, so there was much celebrating; and finally, we had several visitors today, which made my day and Carter's as well. Thank you to Denise for a surprise visit, to Linda D for lunch, and Grandpa and Grandma H for dinner!

Oh, one final thing: We are feeling a tug at our hearts to do something to help families in our situation. Perhaps a Ronald McDonald House sort of thing--giving families a place to stay or rest during hospital stays. It's probably far in the future, but we'd welcome any advice or thoughts.