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Video: What It Feels like Waiting for Test Results for Your Child

Alethea Mshar
Special needs mom and Blogger
02/02/17  9:59 AM PST

In this video, I’m at Nationwide Children’s Hospital while my son Ben undergoes numerous medical tests. Ben has Down syndrome as well as a host of other chronic conditions, including cyclic vomiting syndrome and functional vomiting, meaning he throws up frequently. He’s had problems with vomiting since he was 2 years old and now he’s almost 11. His vomiting has been pretty well under control the past few months but there’s no guarantee it’ll stay that way, so we’re here waiting for test results to see if doctors can find a cause for his condition.

We’ve traveled 500 miles one way to stay at Ronald McDonald House, a home-away-from-home for families with seriously ill children. This location is right across the street from the hospital. It’s a great place to stay while Ben gets testing.

One of his tests involves a catheter being placed into his stomach and small intestine, or manometry testing, to measure his stomach function. He will also have to eat eggs laced with barium, so that doctors can see how fast the eggs move through his gastrointestinal system on an X ray.

During this time, there’s lots of medical professionals buzzing around Ben – nurses calling in the doctor, doctors looking closely at Ben and other activity. Today I met with one of the doctors to discuss Ben. Anticipating test results for your child is difficult and scary.

It’s hard to know what to feel- do you want to find out there’s a real diagnosis that explains away his symptoms or do you want to hear they can’t find anything wrong? What if they’ve missed this one thing all his life and now they know how to treat him more effectively? On the other hand, if there’s nothing that can be done about it, did you waste your time and precious energy away from the rest of your family and stress out your child only to find this out?

All this medical testing has gotten a little easier over the years but it never feels normal. You’re always wondering how the other shoe will drop. Will this visit to specialists turn on a light that will make everyone’s life better, or the opposite? Either way, you will continue to do everything in your power to care for your child the best way that only you can and you will never stop.

 

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