19 Nov Update
We had a care conference this morning with Keegan’s transplant team, GI doctors, and hematologists. We have scheduled him for another upper endoscopy/colonoscopy on Thursday at 7:30am. Keegan has had blood in every dirty diaper since Friday, and GI believes it’s coming from his lower colon. They will look into the cause of the blood, take more biopsies in case there were any sampling errors from his last ones, and also do a more reliable test for pancreatic insufficiency. While he is sedated, hematology will do the bone marrow biopsy and aspiration. Together, the two procedures with anesthesia will take about two to three hours. Additionally, we are scheduling a CT scan of Keegan’s entire torso and neck. I won’t get into what we are looking for at this point, but we are very comforted that Keegan’s team of doctors is far from giving up on him. There have been times we’ve felt like things haven’t been moving as quickly as we’d like. We felt after today’s conference that everyone is just as frustrated as we are. Once again, Keegan has thrown the book out and challenged his doctors to figure out what’s wrong. Still, he continues to be in a good mood most of the time, which is definitely encouraging. They put him back on contact precautions for about 12 hours to test once again for c-diff. He hates contact because of the gowns and gloves the nurses and doctors must wear. That test came back negative once again, so we are thankfully off contact again. We have increased the calories in his TPN to be 4x that of what a normal baby his age is getting. He weighed in at just over 16 pounds today, so that is working. He continues to have lowering blood counts, about 14 stools each day, and blood in his stool.
PLEASE pray that the remaining tests we have scheduled for this week provide an answer for Keegan. His doctors are all now firmly on the same page, and we definitely feel the communication has gotten better. Now, we just need to know how we can help our Bug get back to normal. Thank you so very much for your prayers thus far. We appreciate all your thoughts, prayers, support, and we know we couldn’t have made it this far without it. Thank you so much.