Wednesday, October 29, 2008


Dr. Brown came by late last night and recommended a good plan of action. The first and most important thing is to get a reliable access point on Keegan for fluids, nutrition, and IV drugs. We've tried both hands and feet in the last 24 hours for IV access, and each vein will draw blood but won't flush. Since picc lines are very fickle and short-term, the consensus was that Keegan will need another central line. This time, they are planning to do a portacath which will sit just under the skin, rather than a broviac line like he had before which hangs out of the body. Portacaths can be left in for a year or more if necessary, and you would never know he had it in unless it was in use. Unfortunately, Keegan has had so many veins accessed over the last year, that the surgeons asked for an MRV (Magnetic Resonance Venogram) or venous study to make sure they had a clear path before cutting him open. This is basically an MRI of his blood vessels to see which ones may be usable. Hopefully, the anesthesiologist for the MRV will be able to get a basic IV started while he's sedated and not in pain. We are grateful that they are being careful, but scheduling all this is a slight nightmare. We really wish that he can get the MRV completed and go into surgery for the central line today. Keegan has not had any nutrition since the diarrhea increased yesterday around 6pm. He cannot have anything in his ng tube now in case they can get him into surgery; he has to not have anything in his tummy for anesthesia. Without a central access point, he can't even get TPN, and we really don't want him losing even more weight.

The next step after making sure we have a more permanent access point is to do some more exploratory procedures to find the root of the problem. All his cultures (blood, urine, stool, bowel biopsies, and throat cultures) have come back negative so far, and everyone is fairly confident they will stay that way. However, the inflammatory markers in his blood are up, so there's some kind of infection somewhere. Dr. Brown said best case scenario is that Keegan has a walled-off abcess in his abdomen from his old PD catheter or bypass. That happened to Gray when his appendix ruptured at sea four years ago. We will start with an abdominal CT scan, and if that isn't conclusive, Keegan will have a colonoscopy. We may even be able to get the CT done after the MRV while he's sedated, but they're still working on it. We also still have the strange lesion on the back of his throat; all cultures of it are negative, but it's still there. They're asking dental and/or ENT to come take a gander at it.

Obviously, with surgeries, procedures, fevers, and weight loss, we will probably not be going home anytime soon. Funny how you can be born, have open heart surgery, go on ECMO, have a heart transplant, and be home in one month flat. The GI system is just mysterious compared to the heart, I guess. Considering Keegan does need to be near his transplant team, Dr. Brown is going to ask GI from Children's to take over the procedures that need to be done, rather than have him transferred to Medical City. He will remain Keegan's primary GI, but he will now be handing off part of Keegan's care to Children's GI, hopefully to the head of the department himself.

The nurse practitioner just came in and said he's scheduled for the MRV at noon now. We'll update later with more information. Thank you as always for your concern for our Bug.

Prayer requests:

1. Please pray that Keegan does well with sedation and can at least get an IV started until this is all over.

2. Please pray that the central line goes in well and heals up well.

3. Please pray for rest and peace for Keegan as we search for an answer. Of course, pray for a diagnosis for Keegan, but until we get that, we ask for comfort for Keegan.