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Monday, April 29, 2013

Why I hate normal test results

There are all sorts of articles floating around that attempt to lump the sentiments of all special needs parents together on certain topics. I'm not going to pretend to speak for all parents of children with special needs, but I need to explain something. When it comes to medical testing, "normal" is not usually what I want to hear. Over the last 3 years, I've had a similar conversation play out more times than I can count. A friend or family member will hear that we're about to have a test done and will wish us luck and say they're hoping everything comes back normal. Or they'll ask me how the latest test went and when I tell them that the results came back normal, they'll congratulate me. I can't exactly blame them because admittedly, "normal" sounds like a positive thing. Sometimes it's a VERY good thing. We've ruled out some scary things in the past. Normal is not always positive though, and here's why.
Yes, that is a totally gross picture of my sweet girl vomiting her little guts out like she used to do every night between 10 and 11pm. But all the tests were normal, so that means she's fine, right?

A child who vomits 600 times in their first year of life has a problem. A child who gags when they see a spoon has a problem. A child who suddenly drops off the growth chart and refuses to eat has a problem. A child who depends on massive doses of stool softeners, laxatives, and enemas in order to produce even a minimal bowel movement has a problem. A child who asks for Maalox for breakfast has a problem. A child who can vomit 6 hour old food has a problem. A child who never progressed from breastmilk to solid food and survives off of formula, gluten-free crackers, and chocolate chips has a problem. A child who breaks out in rashes from touching certain foods has a problem. A child who has diarrhea 4 or 5 times a day has a problem. A child who wakes up in the middle of the night with a mouth full of refluxed stomach contents has a problem. (are we seeing a theme here? and no, these aren't all Raya)

Symptoms like these are problems, especially after a myriad of remedies have been employed with no relief. (or not enough relief) When your child is miserable, has an ongoing problem that you haven't been able to fix, or is not progressing as they should be developmentally, you need to know what is at the root of the problem.

I woke up this morning with a bit of anxiety about Raya's upcoming impedance study. (She's being admitted in the morning for a 24 hour "sleepover" so we can measure her acid and non-acid reflux.) As the day has gone on, my anxiety has built. (and so has the level of acidity in my stomach. I need some of Raya's Tums.) My anxiety is one part PTSD at the idea of being admitted after staying out of the hospital for 2+ years (ok, 2 years, 4 months, and 15 days but who's counting) and two parts paranoia that the test we're about to do will come back "WNL" (within normal limits, one of my least favorite medical acronyms).

Her last impedance study, complete with RIDICULOUS tape job and arm restraints.
Really, the first part is completely silly of me. This is one admission where there would be no reason at all to have to stay longer than the planned 24-ish hours, unlike the times when she was admitted and we were told it would probably only be 24-48 hours & ended up being there from 5-15 days. We'll be in tomorrow and out on Wednesday, and there will be no needles involved. We've actually done this test at home before but this time it's slightly different & we have to do it inpatient. It will be more like a little mini-vacation for the two of us. Cable TV, a nice cafeteria, a PRIVATE ROOM (which we NEVER HAD any of the other times we were in that hospital), and no other kids to worry about for 24 hours. Totally not a big deal, but it's still a hospital admission. The paranoia part is because I'm trying to find a balance between allowing myself to hope that we'll get useful information out of this test and not getting my hopes up too high since I have come to automatically assume that all test results will be normal since they usually are. (that really should have been 3 different sentances but whatever)
Why does a simple hospital admission for a test give me anxiety? Oh yeah, because it might be COMPLETELY MISERABLE and give us nothing new to work with.
The point I'm slowly trying to make is that when you KNOW there is something wrong, the LAST thing you want to hear from the doctor is that the test you were really hoping would shed some light on the situation and point you in the right direction for treating the problem has come back WNL. When we flew across the country for motility testing a couple years ago and the doctors there told me that her manometry and gastric emptying studies had been "WNL", I was floored. How in the world could her stomach and intestines be functioning within normal limits when she's VOMITING all the time and has to be fed directly into her intestine in order to minimize calorie loss from said vomiting?!? We KNEW that something wasn't normal, and we were POSITIVE that doing those tests that we couldn't do at our hospital here would tell us what it was. That did not happen. It told us what it wasn't, just like nearly every other test she's had done has told us. Then there's the mommy guilt over subjecting her to test after test after test because we're just SURE that the next test will give us something helpful to work with.
Manometry testing

 So while a part of me really wants to believe that this impedance study will give us an accurate picture of what I feel is persistant, problematic GERD, there's a nagging, gnawing fear and anxiety that it will be within normal limits and we will be exactly where we are now, which is STUCK. And nobody likes to be stuck and feel stagnant and hear things like, "Well, just keep doing what you're doing and maybe things will improve with time." or "Hmmm...I'm not really sure what to do next." or the dreaded, "Well maybe she'll just grow out of it." (I could write another whole blog post about why I hate that statement but I won't. Not right now, anyway.) Things HAVEN'T gotten better, and she HASN'T grown out of anything, which is why we're doing the impedance study. And if the results do turn out to be normal, I will probably cry and I might even swear a little. But maybe this will be the time that the test isn't normal...But what if it is...But what if it isn't...

*sigh* So there you have it. An anxiety-driven diatribe about why NORMAL doesn't necessarily equal GOOD. Hoping for the best, preparing mentally for "normal", and crossing my fingers that we'll land somewhere in between.

1 comment:

  1. Good luck, I hope you get a good outcome that gives Raya relief, whatever it may be. I hear you on the growing out of it - I hear that daily as either a question directed to me from well meaning friends or a statement from a well meaning but totally clueless doctor.

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