Friday, February 6, 2009

Update

We are STILL waiting on the results from Keegan's liver biopsy. Yesterday, they said it would be more like next Monday before they have any more information. We asked our transplant surgeon to go throw some weight around. She said she would but explained that the electron microscope can take several days and that it was the best way they could possibly look at things. We are pushing to get everything in order for a referral for Children's Hospital of Boston just in case we need it next week. There are some specialists there that might be interested in helping Keegan, but this is a bad time of year to need a bed at ne of the busiest pediatric hospitals in the country. We'd prefer not to have to go to Boston in February (brrr!), but we'll go to the ends of the earth to find answers for Keegan.

Keegan had a bad night after my last post. He has had some stomach pain and distention the last few days, although his diarrhea remains unchanged. I should have known better than to agree to push his feeds on Wednesday. We went from 12ml to 15ml in one day, and Keegan paid the price that night, tossing his cookies for almost an hour. Needless to say, we're back to 2ml increases every 2 days. Keegan has shown us time and time and time again to go slowly. We just get excited and try to push him too hard. On that front, we've made a big step today (hopefully not too big for Keegan)...he had 1 full ounce of rice cereal today!!! YEAH!! I cannot tell you how nervous I was to try it. Keegan has not taken food off of a spoon since July, no solid food at all since September, and nothing by mouth except water since October. Speech has been diligently working with him the last few months to keep his mouth muscles working and reduce his oral aversion. We were so happy when he started taking water off of a spoon in late November. I give a lot of credit to the speech therapist for enabling such a smooth transition to the rice cereal today. We won't try more than an ounce a day for at least a week. Please pray with us that Keegan will tolerate the rice cereal without too much discomfort.

Unless there are any big changes or news, we probably won't update again until Monday. We're hoping for a very quiet weekend here. No more labs or shots until Monday either. Keegan is tolerating his twice-weekly GCSF ok, only dropping his ANC to around 300 or so between injections. Hem/onc said it will take a few months for him to stabilize on this dose, but they don't want to give him too much either. With the blood he got last week and weekly epogen injections, we're hoping to keep his counts stable for another 5 weeks at least. We're still working on some theories on the immunology side, but those labs take awhile. That's about it for now.

I know that this waiting for answers has been just as hard for our family and friends as it has been for us. I wish I could put into words how humbled and appreciaive we are that each of you has remained so faithful and devoted to Keegan and our family. Your prayers, your thoughts, your stories of how Keegan's life has touched others...they mean more than we ever could have thought possible. What an incredible son we have who has strengthened the relationships and faith of so many!

Thank you so much!