14 Jan Update
Unfortunately, I don’t have a lot of news to report at this time. Keegan has not had what we’ll call a “pain episode”, for lack of a better term, since last night. He seems in much better spirits today, albeit still rather tired and puffy. His fever seems to be gone for now. He is back on GCSF, but his marrow hasn’t responded yet. His neutropenia is more severe today than before, although it should begin to get better with continued GCSF treatment. Keegan’s red counts are again staying stable just above transplant’s threshold for blood. And lastly in the “good news” department, GI approved putting him back on his old immunosuppressant! Our Bug will hopefully start looking like himself again soon.
Onto the rest of the news…Keegan’s first blood culture grew back for another staph infection in his port. We don’t know what type yet, and we drew another culture yesterday to try to determine if the first one was contaminated. He’s being treated with antibiotics anyway. We spent most of the morning having a test in radiology called an “upper GI with small bowel follow-through”, basically a series of xrays to see how dye travels through the small intestine. We were looking for scar tissue from the different tubes and surgeries when he was an infant, but everything looked fairly normal. They have drawn lots of blood and are trying to get lots of stool samples. For now, we are treating his liver problems and diarrhea as two separate issues. More liver labs were sent out today, and the doctors have him on “gut rest” (basically nothing in his tummy but meds and water). He has not had any feeds since 3pm on Sunday, and he continues to have about 10 bouts of diarrhea each day. Beginning tonight, he will go back on 20 hours of TPN a day to compensate for not having formula going in his ng tube. We has tested negative three times now for the c-diff infection, so at least we are off contact precautions for now.
All that being said, we will likely be transferred onto the GI service in the next few days, since those are his main issues. Again, we will continue to keep you updated as we know more. This is looking like it will be at least a couple of weeks of inpatient treatment at this point. We can never, ever express how much your support and prayers mean to us. A friend of ours today said that we know our Lord has all the answers for Keegan, and we pray He will continue to lead Keegan’s team of doctors and medical staff in the right direction to give him healing and peace. More soon.