July 15, 2008: Case Manager’s Dilemma, part 2
When are you exhausting every non-invasive possibility or just delaying the inevitable?
I spoke with the gastroenterologist, who diagnosed Haley as having Tacrolimus-induced allergic reaction. That is why she prescribed Haley to get off all food, but she’s willing to see if it’s the milk in Haley’s diet that’s causing it. So we’re switching her milk with Soy (and possibly rice milk), and in a month, if Haley is eating better, then we can proceed without doing anything else.
If not, here is what is in store: either a feeding tube that enters her gut, or TPN — this is basically the nutrition she got in the hospital– but instead of her lines, it would now go through her mediport. Which means that getting it out next week is probably also postponed until they figure something out.
TPN and feeding tube both try to accomplish the same thing– put on weight for Haley. Doctors here are leaning toward the feeding tube, and the doctors up in New York favor TPN.
I have a lot of research to do, because as of right now, if it’s not the milk, I’m not swayed either way. I know it would have to be one or the other, and all I can think of is how much she’s already been through. Luckily, she’s still too young to remember anything.
I feel like we’re in the middle of a multi-part ”House” episode. Paging Hugh Lawrie…
I don’t think you’re being contentious. I think you’re confused. With good reason! I know you wanted an answer, but I still think it’s a good thing that she doesn’t have GVHD, even a mild case of it. I still think this child is recovering- slowly- from a shock to her little system. It makes sense to me to take her off milk (especially is you have an intolerance!) and see how that goes. Try that, get the bone barrow opinion, and go from there. And don’t you worry one little bit about whether you’re being contentious. Haley needs you to figure this out, and you are her gal. And a great gal at that. Love, Dana
July 17th, 2008 | #