Tuesday, August 18, 2009


Keegan's having a bit of a better week with his intestinal problems. He is really excelling in occupational therapy, mainly working on his upper body strength now. Feeding therapy isn't really progressing yet, but it will just need time. We will run a full panel of labs and do his monthly breathing treatment tomorrow. Thursday, we have an appointment with his hematologist. It seems Keegan isn't responding to his shots for his anemia and neutropenia the way he used to, so we will be discussing what, if anything, we're going to do about that at this point. We are also anticipating trying to wean his antibiotic by the end of the week. Since Keegan's diarrhea is slightly improved, trying to wean him off the medication now will give us a better idea if it is helping, hurting, or doing nothing at all.

We finally spoke with Keegan's nephrologist about the ultrasound of his kidneys done last week. His left kidney is atrophied and not filtering much at all. His right kidney is enlarged from taking up the slack, but it is, at least, taking up the slack for the left one. The other good news is that there has been no further degeneration since February, when he last had his kidneys scanned. They can't be sure, but the doctors don't think that his renal failure post-transplant was the cause of his current problems. It's more likely that the left kidney was always smaller; we were just paying more attention to his heart at the time. It is possible that his kidney didn't get enough oxygen in utero due to his heart defect and is underdeveloped (much like what we think may have happened to his intestines). There are a few other issues the nephrologist will be discussing with his hematologist. We'll be sure to update once we know more. Obviously, the big question here is what does his current kidney state mean for his future? Immunosuppressants, especially the one Keegan is on, cause kidney toxicity over time. Keegan's not yet 2 years old, already has abnormal kidneys, and will be on immunosuppressants every day for the rest of his life. Again, these questions are ones we are considering carefully and consulting with our doctors about them.

Thank you so much for your prayers for Hannah! I went to visit her today, and she looks awesome! Her heart biopsy showed NO rejection, and she has not bled in over 10 days. She was sitting up in a chair, watching Sleeping Beauty, and telling me that she really wanted a salad and cereal with a banana (what a combo!). God is so good! Also, please keep little miss Avery in your prayers. She had a scope and bone marrow biopsy yesterday, and she spiked a fever today. Please pray that she recovers quickly at home. She is a courageous fighter, but she needs to stay home with her mom and dad!

New pictures are up on Keegan's photo site! Sorry we haven't posted any videos lately. Gray got an awesome new camera for his birthday, but we haven't figured out how to use the video and all the other fun features. We will record some soon. We are so grateful to have Keegan at home. We are so busy with doctor visits, therapy, labs, etc (only one day off in over two months!), but we are making the most of the time we have left before winter lock-down (which will unfortunately probably start earlier this year due to swine flu). Check out the pictures of our happy boy, and you'll see that he doesn't seem to mind anything! We love him so much, and we are so grateful for your prayers and support for our blessed miracle!