Thursday, October 30, 2008

Evening Update

Keegan did fine through the surgery and CT. The surgeons were able to get the port in and preserve his jugular veins for future cardiac purposes. The port is working fine and is now being used to give him IV fluids. We'll start him back on TPN tomorrow. Finally, Keegan has a permanent access point to help keep him stable through all of this. The bonus is that he’ll have it for a long time to make labs much easier. The ENT surgeon took a biopsy of the lesion on Keegan's throat. He said it appears to be nothing remarkable, like an ulcer; however, we won't know for sure until the biopsy results come back in 3-5 days. If it is a benign ulcer, the question becomes why hasn't it healed. They would have expected it to heal by now, despite his immune suppression. Keegan was back in postop recovery after the CT scan by about 4:30pm. He has been asleep for most of the afternoon and evening, which of course means he'll probably be up all night. We were not able to have the care conference today, as Keegan did not get out of surgery in time. It is now scheduled for tomorrow morning at 10:15am.Unfortunately, we don't have many answers right now from the CT. Dr. Brown came up tonight and consulted with the radiologist. It was odd because it looked like all the contrast had settled on one side. They couldn't see anything but air on the right side of his body. Dr. Brown ordered an xray to see if the contrast had finally made its way through Keegan's system. The xray showed that the contrast had in fact made its way through. There seemed to be no malrotation or flipping of his colon. There does seem to be some pooling of contrast in his bladder. That is obviously secondary to everything else we’re dealing with, but Dr. Fixler did order a 3D sonogram of Keegan’s bladder tomorrow to investigate that further. I’m giving the bare bones description here because otherwise you’d be reading a novel. Once we have definitive answers, we’ll let you know. At any rate, whatever is happening in his bladder doesn’t seem to be bothering him too much because he’s still urinating and doesn’t have a urinary tract infection or blood in his urine.The resident on the floor tonight was relaying this most recent info to Dr. Brown, since he left before the xray results came in. His plan is to consult with Children’s GI to schedule Keegan for a colonoscopy. It could happen Saturday, but it may not be until early next week. We’ll keep you informed as we learn more.For now, Happy Halloween! Keegan, a.k.a. the Itsy Bitsy Spider, will surely be the hit of the Children’s Halloween happenings tomorrow. We’ll take as many pictures as we can. Please pray that Keegan feels well enough tomorrow to participate and that he has a restful night. We are working as hard as we can to help find an answer to help our little Bug. It is extremely frustrating that every diagnostic Keegan’s been through lately has ended with the phrase, “well, the good news is everything’s normal” when we know for a fact that something is very wrong. We told the doctors tonight that we’re to the point where we’re not so afraid of it being something “bad” per se; we just want to know what it is. Thank you as always for your love, prayers, and support. More tomorrow.