Friday, January 16, 2009


Keegan is being a very, very strong little boy. Yesterday, he had even more diarrhea than before on his fifth day of being on gut rest. We have not been able to get a good sample for the last remaining stool studies, but we are going to go ahead with putting him back on his feeds. He has been without anything in his tummy long enough for them to know and see what they need. Also, his neutropenia remains very severe and unresponsive to the GCSF. It went down again today to the lowest we've ever measured - 32. That is critically low, and hem/onc has increased his dose of GCSF a little more in hopes to see it start coming back tomorrow. Unfortunately, GCSF is the only known treatment for this type of neutropenia.

We did have a good meeting with the immunologist this morning. She seemed to have some good ideas and thought there was strong evidence of an autoimmune disorder or dysfunction. She has written for a lot of blood work to be done on Monday (send-outs generally aren't done on a Friday). Some of them will take quite a bit of time to come back. His hem/onc doctor told us this afternoon that Keegan will almost certainly need a transfusion Monday evening because the amount of blood they will need to take from him is so great. The epo has bought him 6 whole weeks without a transfusion, and for that, we are glad. If we need one more to get an answer, then that's fine. Keegan's blood culture from yesterday has not grown back positive yet. We're hoping it won't and that we can start kicking this infection.

We've had lots of visitors from the 8th floor, and after his nap, Child Life is going to take him back up there for play time and see his nurse girlfriends. Thank you so much for your prayers. Hope everyone's staying warm out there!