Surgery

So yesterday at rounds, the plan for Kaylie was to simply continue replacing what she was losing and hoping the specialists would begin coming up with answers, or at least ideas, to what is going on. But, when we came back from lunch, the surgeon came to speak with us and basically said that we had two choices: #1 withdraw treatment and let Kaylie go or #2 do a liver biopsy which means surgery that she may not survive due to her inability to clot. Of course the answer was obvious to us, we had to try. The reason being the hematologist (blood specialist) needed to look at the liver cells to see what has been causing her liver to not function properly. So, late last night they took our little girl into the OR and opened her abdomen. Another complication is that she has been receiving tons of fluids, but has not been excreting the extra fluid, so she was getting all puffed up and made it impossible to close the incision. Today she was continuing to bleed enormously, so they wanted to take her back into surgery to redress the site and to try to help with the bleeding. They had to seriously pump everything they could as fast as they could into her and then rush her in and quickly do the surgery - it was so scary! Also, we got the preliminary results from the biopsies and they determined that it is probably not a tumor, but that the liver cells are definitely abnormal and they believe it is probably a metabolic disorder that we are looking at. And, as usual, the genetic results are still not back.........or at least no one has followed up with them. So Kaylie is stable for now and hopefully they will begin all the testing to check for and begin ruling out the various metabolic conditions she could possibly have so that we can begin treating her effectively.