Are we calm now?

I didn't have time to mention in my previous post that I went to see this year's Christmas Revels on Saturday night. TOWWAS got me a pair of most excellent tickets, and I brought my mom to the show, almost straight from the airport. We loved it! Granted, it was particularly awesome to see TOWWAS, Miss Shirley, G Dog and many other friends on stage, and the quality of the singing and the Early American music and dancing knocked my socks off. There were so many people that I like and recognized from the show that I'm sure I annoyed my mom whispering, "that one -- in the green with the white apron, that's so-and-so who does such-and-such." It was such a beautiful contrast from the hospital to be out in DC, at a theater, enjoying a professional-caliber show. If you dig folk music, go see this show. It's not community theater -- it's waaay better.

Back to reality: I didn't mention in my previous post all the equipment we came home with to care for Roxanne. The main piece: feeding pump and tube. She is still getting all her formula through a tube in her nose that delivers nutrition, hydration and medication (including her seizure medicine) directly into her duadenum. The pulmonary and GI doctors aren't willing to let her try taking food orally until her lungs heal from her previous aspirations. If she still has swallow problems, she could aspirate food going down, and if her reflux is bad enough, she could aspirate food coming up. I have an appointment with the pulmonary doc in a couple of weeks, and we'll see how she's doing. In the breathing department, she came home with a nebulizer for twice daily breathing treatments, a pulse oximeter (for overnight and spot checking) and oxygen (if the pulse ox says she's too low). I'm trying not to let all this crap overwhelm me.

Today, Roxanne is doing better, but for the last couple of days she's been throwing up several times a day, which could mean problems with her ND tube. After begging for an appointment, we finally got in to see her GI doctor today, and had her tube checked. Everything seems to be in place, so that's good. The doc thinks she might have a stomach virus, and it should pass soon. Ugh. Does the drama ever end? No? Great.

Does anybody want to come decorate my house? Christmas is #482 on my list of things to do.

Despite my crabby tone, I'm very grateful we didn't have to go back to the hospital today. I'm seriously considering making a switch from her previous hospital to Children's in DC, but I don't think I have the energy to do so right now. So please wish for calm days ahead, no hospital stays needed. Perhaps a Christmas miracle? That would be good.