10 Feb Update
How many times lately have I started a blog entry with the word “unfortunately”? I don’t know, but let’s add another one. Unfortunately, we’re not going to get an answer for Keegan from his liver biopsy. I’m so angry with the pathology department here that steam is probably about to shoot out of my ears. We’ve waited 12 days since his biopsy, and the most we got was that they really don’t know why the cells in his liver are swollen with fluid. For the first 5 days after the biopsy, the GI doctors told us this fluid in his hepatocytes was evidence Keegan has a metabolic disorder, which would likely encompass a lot of his symptoms. We were somewhat relieved by that news, and we were waiting on further testing to help us determine which of about 50 disorders it was. We were told the tissue was being prepared to look at with the electron microscope, but now we have come to find out that was never done. Last time I spoke with the GI doctor around 2:30pm, there still wasn’t a final report in the computer, but from his conversation with the pathologist, they were likely going to blame the liver abnormalities to his immunosuppression medications. Interesting, since yesterday our transplant surgeon said she’s never heard of such a thing. So, to sum things up, we are still without an answer for Keegan.
Our primary GI is actually the attending this week. He has ordered a number of additional stool and urine studies to make sure he covers everything he can think of before sending us home. We’ve been told that Children’s will help with getting Keegan to Boston (or anywhere else) when and if they will see us, so it looks like we’ll be going home around Friday, barring any big problems. It seems we’re going to have to do most of the second-opinion-footwork ourselves, and we might as well be at home to do that.
We’ve switched Keegan to larger feeds 3 times a day and a smaller amount overnight to give him more time disconnected from his IV pole. Today, we condensed his TPN to 12 hours. Our GI doctors said today though that unless we figure out why Keegan’s not absorbing enough of his formula to gain weight, then we won’t be able to get him off of the TPN completely. The unsaid result of that happens to be that unless we get him off of TPN, his liver will continue to take a hit. We want to make sure we don’t do irreversible damage to his liver.
That’s about all I have the energy to post at this point. I’m so obscenely frustrated that I can’t even finish putting my thoughts into words at this point. I had planned to just start calling doctors at other hospitals today, just to find anyone else to take a fresh look at Keegan’s case. However, we need to finish these last few labs that the GI doc wants before we start pestering so that we have a complete picture to present. Two of the GI docs here claim they are emailing doctors at different hospitals already, but we’ll see. Other than that, Keegan is still the same goofball he always is, and he’s really enjoying his few hours of freedom each day. We’re hoping he’ll have more incentive to start walking if he is free of his IV pole. Oh, and he’s done ok with the rice cereal the last few days; not as much as the first day, but he is still willing to give it a try once a day.
Thank you for your continued prayers for Keegan’s healing. They are needed so much more now than ever as we face a new phase of uncertainty. Thanks again, and have a great week.