Thursday, April 23, 2009


This has been a little bit of a difficult week to coordinate biopsy results because our cardiologist in Boston is out of town for a conference while our gastroenterologist is on service (the doctor for GI patients in the hospital). Keegan's liver enzymes in his blood are coming back down, although other numbers are still off, typical Keegan. This afternoon, the biopsy stains came back negative for EBV, the virus that causes mono. This was a concern because EBV exposure can be a precursor to the main type of lymphoma affecting transplant patients. There is a notable population of lymphocytes in Keegan's liver tissue, but I believe the current interpretation is that Keegan had some type of acute liver infection (meaning already come and gone). I say that, but the last email and phone call from Dr. Kamin suggested there may actually be an autoimmune problem afterall. This is going to get confusing fast, but the basic idea is that Keegan's immune system might be confused from being on drugs to suppress his immune system from a very young age, i.e. birth. Basically, Keegan's immune system could be attacking other organs, like his liver, gut, blood, skin, etc, but the reaction is kept in check somewhat by the fact that he is already on drugs to suppress immune responses. We will meet with our full team at the beginning of next week for further labs, evaluations, and discussions. There are a few things that may require follow-up over the weekend, but I'm not sure of that tonight.

I've posted a few new pictures to yesterday's album from the garden at Children's Hospital when were waiting on things today. We're looking forward to a lovely, warm weekend here in Boston, so hopefully, we'll have a few more pictures soon.

Also, we've set up Twitter accounts to help update about Keegan in between the times we make acutal journal entries. Most of the time, we have small tidbits of information to update, but we don't want to post a journal entry and send an email about it. Hopefully, using Twitter will let us update those day-to-day tidbits. Mama (Maddie) will mainly update on Keegan; follow Maddie on Twitter HERE. Daddy (Gray) also set up a Twitter account but won't be update as often; follow Gray on Twitter HERE. You can join and create your own Twitter account, or you can just check my Twitter updates via the previous link. There is also a link on the Welcome page.

That's all for now. Hopefully tomorrow will be more fun stuff than an afternoon at the hospital. Thank you so much for your prayers and concern regarding Keegan's liver biopsy and our attempts to get home. You are appreciated so very much!