24 Sep Update
Ok, so we’re still here. Keegan had a pretty rough night. He felt a little better after getting the blood transfusion, but he was having some terrible bowel issues and was in alot of pain. This morning, we woke up bright and early to go down to radiology for xray and bone age scan. His echo and EKG were later in the afternoon. All of these tests were fine, and his biopsy came back with Grade 1R mild rejection. This is considered a stable condition, and it will only require a bit of alteration to his meds. He is already going to some med changes due to the levels in his most recent labs.
We were waiting all day on a GI consult. Keegan still had no weight gain; he had blood loss and severe diarrhea. There were a few theories about this that I won’t go into now. Before we could get to that, one of the simpler answers came back – Keegan tested positive for “c-diff.” This is not good but treatable. Basically, when he was sick last month, the massive amounts of antibiotics he was on erradicated the good bacteria in his system, allowing the bad c-diff bacteria to take over. It is a very nasty infection, but as of now, they are not concerned about its effect on his heart. This can be treated with a different type of antibiotics over about 10 days. Before we could start the antiobiotics, Keegan spiked a 102 degree fever and has maintained that for over two hours now. The access team could not get blood for additional cultures because he was too dehydrated, so now we are startying IV fluids.
We will stay here at least through tomorrow, more likely through Friday. We have to wait 24 hours after blood cultures and start of antibiotics, which can’t be done until he is rehydrated enough for labs! The GI team said that they cannot assess him until he is completely clear of the c-diff because any other conditions will be masked by the infection. Once he is clear of the c-diff, which could take weeks, we will assess his remaining weight and blood count issues to determine what other tests may need to be run.
Unfortunately, he will not be able to attend the ribbon-cutting at Legacy tomorrow, but Gray and I are still planning to get to the radiothon taping. Thank you as always for continuing to keep Keegan lifted up in prayer. Our biggest hurdle was his biopsy and any rejection; that is taken care of, and the remaining issues are completely treatable. Please continue to pray for Keegan as he fights this infection. We will update again tomorrow.