Saturday, January 17, 2009


Keegan's had kind of a rough time of it since we started his feeds back up. We got him up to 15ml an hour, but when we pushed it to 20ml, he began throwing up. We backed down a bit, but he has continued to throw up. We're giving him a two-hour break, and then we'll start back over again at 5ml. This time, we'll go much slower, only 1 to 2 ml increases every 4 to 8 hours. Don't have the official plan from the doctor yet on that. Of course, his diarrhea has not benefitted from being back on the feeds, but we have to do what we can to keep his tummy "alive". His blood culture from Wednesday has remained negative, so we've stopped running daily cultures. Our 7-day antibiotic count-down began Wednesday with the first negative culture. Hopefully, the antibiotics have helped Keegan kick this infection. He doesn't have a lot of energy right now. As I'm writing, he's laying on his side in bed, pushing a car back and forth. We didn't run counts today, but I'm guessing his ANC hasn't come up much. We'll run another set on Monday, trying to preserve his levels until the big blood draw on Monday. No other news to report. Every doctor we've talked to lately has been pretty excited about the prospects of the autoimmune testing. We are certainly hopeful, too. It may not help us treat Keegan's symptoms, but as his hematologist said, having a name and a diagnosis keeps us from just trying different things in hopes they'll work. It makes our haystack much smaller, I suppose.

We hope you're having a wonderful weekend. We continue to be unable to express how much your prayers and concern mean to us. Thank you also for your prayers for our little friend, Avery. Her family is hopeful she will be able to go to the "h-word" by Monday. Thanks again.