Weight Issues

So "extra bag O' stuff" it is. We made it home from clinic, no fever, yet. The bad news is that Lily lost over 3 pounds since Friday. As it turns out, I cannot merely eat FOR her to help her maintain her weight. She literally has been unable to keep water down. If she does keep it down- it runs through her poor little system. Although some vomiting and diarrhea is expected, hers lasts for about a week and a half after treatment stops and she is losing too much weight. Lily has always been a big girl with crazy curls and the personality to go with it. The curls or gone, for now, you literally can see her bones and we are only almost half way to the halfway point.

SO the discussion yesterday was what to do about the malnutrition, nausea, diarrhea, and vomiting. The recommendation is a feeding tube. We are fairly familiar with these from our adventures with pancreas boy. The type they would like to put in is a G-J tube, which is different than Phillip's N-J tube. It will go in her belly, past her stomach into the jejunum. If we put food into her belly, it's just gonna cause more nausea and vomiting- so it has to be put in past the pyloric sphincter. It's an outpatient procedure, so she could go home after a couple hours in recovery. Then we would give her food through the tube and potentially some of her medications- which is a plus considering how stellar the medication administration has gone thusfar. The thing is, we have to wait until all her counts are stable enough to do surgery, which means this will be the first big delay in treatment. I guess a gastrenterologist does the procedure, but we've requested Dr. E since she knows Lily's innards so well. I'm not sure when all this will happen, like I said we have to keep an eye on her counts.