Sunday May 16, 2004

Hey All,

Well, yesterday was another tough day (better today though). Andrew had a white blood cell count of 39,000 yesterday and was referred to a hematologist (blood doctor). All kids with DS have an increased risk of leukemia and a high white count is one the factors. We worried pretty much all day! Also Andrew's bilirubin level was 15.9 so he was taken out of his crib and put under phototherapy lights and back into an isolette. It was a struggle to get through the day. The boys came up and stayed at the hospital with us last night—it was the first time in two weeks we were together as a family. Anyway, the hematologist is not worried about leukemia at this time, and basically feels like he will do fine, but she is going to continue to follow Andrew and check his levels every other day. She did say that he may still get leukemia one day (she doubts he ever will right now), but that for some reason kids with DS respond much better to chemotherapy than kids without DS, so his prognosis would be good.

His bilirubin level is down today and the lights are off, and that will get rechecked tomorrow. He is feeding from a bottle his full amount and today Chris gets to start nursing him. Andrew struggles with it—forgetting to breath and setting off the alarms like crazy (it sounds like the Grandma Kelley Room at Soaring Eagle in there)! Twice I have fed him and watched his heart rate drop tot he 30's because he is not breathing and he turns a sickly shade of blue that scares the daylights out of me. He's learning though.

We've been told that a discharge next week is possible, but I think it would be late next week. He's still on one IV antibiotic (Vancomycin).

Please pray that Andrew's white blood cell count drops tomorrow and that he gets the hang of nursing soon (with DS it can take awhile, plus he is a premmie).

Until next time,
In His name,
Duane