Tuesday, December 14, 2010

Results? What results?

For those of you anxiously awaiting results from Roo's big polyp biopsy last month, you might want to get comfortable. In a sudden 180, the hospital now claims that no polyp biopsy was ever taken.  I beg to differ seeing as...

1. I spoke directly with the doctor who performed the scope immediately following the procedure.  He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week. 

2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies.  She reported back to me that he did, they were just taking a while in pathology.

3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day?  Another round of general anesthesia? 

Well, anyway, that's the story I'm getting.  With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken.  In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope.  And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE?  Really?  Mind if I take a knife to your kid's throat repeatedly?  If I don't get what we're looking for, don't worry about it.  I'll call in someone who does.  It will probably be fine. 

I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe.  Basically we can't change anything at this point.  There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis.  I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us.  Maybe small, independent, and kind of smart is more our speed.


  1. Noooooooooooooooooooooooo I can't belive that they would do this to your poor little guy.
    Allergy Mum - http://allergymum.blogspot.com/

  2. Oh, Amy...how awful hon. We went through a similar (but much more mild situation) when Anthony was first diagnosed. Every 2 weeks he was getting sent for skin pricks and blood draws (he was 10 months old). It was awful. I do feel like children who are like ours are constant guinea pigs. That is just ridiculous...sending tons of hugs your way.

  3. I figured they had lost it, but to deny it ever happened seems unreal. I am so sorry, what a mess. Will you be scheduling a meeting with someone "higher up" to discuss this little issue?

  4. Thanks, everyone. The whole ordeal is a little surreal. I don't really know what we're going to do. I think a certified letter to the hospital administration is in order. I'm careful to have everything documented now as much as possible. I don't want to create any more problems than we already have, but I don't want this kind of thing to keep happening to us or anyone else for that matter. We'll see what happens with the next scope and go from there. There's one other EE team in Chicago. Maybe it's time for a change.