Haley’s Giggle

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…

As Haley’s case manager, I’ve always struggled with asking too many questions about decisions being made. Most of the time after a lengthy conversation, I’m at least partly if not wholly convinced of the course of action. This time it’s different. I still don’t understand why we can’t simply start this anti-food thing by simply taking Haley off milk (I myself am lactose intolerant, perhaps it’s as simple as that). Perhaps it’s the drastic nature of the treatment (no food); perhaps I’m scared Haley will lose even more weight; perhaps I don’t want to have to put Haley through one more ordeal if it’s not really the right course of action; perhaps I don’t trust the gastroenterologist to take into account the bone marrow transplant aspect of Haley’s situation; perhaps it just doesn’t make much sense to me. 

 Whatever the reason, it leads me to the dilemma: when do you fight, and when do you just nod and say yes? It’s the dilemma anyone charged with someone else’s care, hell, anyone in charge of their own care, must face when a medical expert says one thing, and nothing about it makes much sense. Where is the line between being thorough and just plain contentious?  Or are they synonymous and the difference lying solely on the merits of your demeanor? For now, until I get a better answer than, “we think that’s what it is,” I won’t make a move without the bone marrow doctors weighing in. That is the perspective this diagnosis is missing, and because of that, I feel we are not yet being thorough. I will take Haley off of milk entirely and put her on rice milk, just to see if at least her input/output function improves. Not that that will make me look any less contentious, of course.

A big big shout out to Dave, Liza, and the boys. We love you all.

The biopsy results came back today, delviered by heartful hematologist.

So let’s start with the good news, which is that Haley does not have GVHD of the gut. This is excellent news for the reason that she would have had to resume the Tacro, and possibly go on steroids while it worked itself out.

 The other good news is that, as of yet, there will be no feeding tube.

 Which leads me to the not-so-good news. Although I haven’t had a proper conversation with her yet, the gastroenterologist (gut doctor) suspects an allergy, of all things. which begs the question: allergic to what, exactly? Except for the milk, which may or may not be the culprit, the girl eats potato chips, life cereal, and soup. Oh, and just started with the lollipop.  There is nothing to get allergic from (besides red dye, but the timing doesn’t jive since she’s had stomach issues for a very very long time). She doesn’t eat eggs, peanuts, honey, exotic fruit, or yellow no. 5. She does eat wheat and milk though, and unfortunately that’s the bulk of her diet.

And now for the temporary bad news: for the next 6 months, Haley has been instructed to eat only a pre-digested formula. No soup, crackers, cereal, potato chips, milk, etc.   Only yhe formula. Of course, before I send my child on this diet without a confirmation of allergy, I will be talking to the gastro doctor, as well as her bone marrow doctors up in NY. Perhaps they’ve seen this and can offer a different exlpanation, or at the very least see if her donor was allergic to anything she’s currently eating.

Will keep you all posted in the coming days.

In the meantime, Haley continues to smile and giggle her way through the days, almost as if she remembers the days when it wasn’t so easy to smile. She did frown when I told her that Brett Favre might come out of retirement and quarterback again for the Green Bay Packers … she thinks it’s a big mistake.

As always, thank you for the continuing love and support from everyone. It means a tremendous deal.