grey's love

when Grey’s hit home.

I will confess that I am not a slave to watching Grey's on Thursday anymore. This past Thurs, I was skyping with Barb in my office…which is a bit unusual b/c I'll often skype with her on my laptop while watching Grey's. I ended up watching it on Hulu late last night. Here's the thing – Grey's hit very, very close to home. 

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I'm not sure how I missed the trailers & the buzz about this episode. Had I have known, I would have planned to be glued to the TV on Thursday. Had I have known, I might have been prepared to see part of MY story, and Austin's story, playing out on the screen. 

When the episode started, we meet Casey, a Mom who brought her son back to the ER with a high fever and a rash. She had been in previously, and was told that her son had a virus. In one scene, they show the little boy laying in the hospital bed, with an angry red rash, chapped lips and a completely listless demeanor. I literally gasped and said, out loud, "he has Kawasaki's." I watched as this Mom kept bringing her son back to the doctors, begging for them to find out what was wrong with him, and crying as she was offered one incorrect diagnosis after another. At one point, they even called a psychiatrist down to talk to her – the suggestion, of course, that she was crazy…or that she was making her kid sick. Watch the episode for yourself to see the whole story – but I'll skip to the end. There's a scene where Meredith realizes that they are, in fact, dealing with Kawasaki Disease, and checks her phone to see what day they're on. She's realizes that they're on Day 10, and runs for the boys room. I was shaking at that point…

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About a month after Austin turned one, he got very sick. His first symptom was a fever – scary b/c he had meningitis at 5 weeks old, so our experience with high fever was terrifying. We took him to the pediatrician. Diagnosis – virus. On day two, he had a rash. Back to the pediatrician. Diagnosis – virus. Day three arrived with a "strawberry tongue" and really chapped lips. Back to the pediatrician. Diagnosis – virus. On this day, there was an intern shadowing the pediatrician. As they reviewed the chart, the intern said quietly to the Dr "could this be Kawasaki's?" The doctor said "No. He doesn't fit the profile." I called my Mom that night, and told her about the mention. This part is fuzzy, but I think she went to the library (no www then) and either called or faxed information about KD. There was a list of markers for KD. Day four – add in red, bloodshot eyes. That was on the list. Diagnosis – bad virus + pink eye. He was not getting better

On day five, Austin's hands and feet were swollen. Another marker. Five days, five markers. It was a Saturday. I called the doctor, and insisted on bringing him in. AGAIN. This time, there was a different pediatrician working. He reviewed the chart, and I hesitantly told him about the intern's Kawasaki Disease comment. He left the room, and returned with a very solemn look on his face. He calmly told us to get Austin dressed and go immediately across the street to the hospital. He said, "The intern was right. He has Kawasaki Disease. We need to hurry." After Austin was ready to go, we walked out to the front – expecting to need paperwork or something. The doc was on the phone. He looked up, and yelled "GO! NOW!" As we left, I heard him say "I need a pediatric cardiologist, stat." To this day, I can still feel the fear in those words. 

Austin was treated with IVIG on day 5. We were incredibly lucky. His initial echo showed a slightly enlarged artery, but no aneurysm. I remember signing a release to allow for him to be photographed…KD is rare, so every case warrants study. He has had regular cardiac evaluations over the years, and has passed with flying colors. He had his last appointment with his cardiologist just before starting high school sports. He was given a clean bill of health. 

I have watched many of my friends advocate for their sick kids. They don't stop asking questions and demanding answers. Sure, sometimes it IS "just a virus/allergy/whatever." But sometimes? Sometimes it's not. Well done, Grey's Anatomy. Well done. 

6 Comments

  • mary

    It is amazing to think how many diseases and conditions like this would be ignored if it were not for moms who insist on an accurate diagnosis. I believe “virus” is the standard cover-up for “we don’t really know without more symptoms” and unfortunately some moms feel too confident about that diagnosis to continue to monitor any changes. Thank God Austin survived without lasting damage. And thanks to medical shows and the internet people tend to be more informed now. However, there are still many children suffering from rare diseases that don’t get any publicity.

  • Claudia McDaniel

    OMG! Your story is so scary but I’m so glad that you were persistent and got the medical attention your son needed. Thank God he is doing well.

  • shelleymay

    wow. oh my gosh. just wow. going through some… well.. more… hmmm. “stuff” with kennedy that may. or may not. be linked to her tourettes. that may or may not be just double vision. that may or may not. be just a depth perception issue. that may or may not. have an uderlying cause. “you really don’t need to have a blood draw, but yeah, i guess it wouldn’t hurt.” just reading this is making all my nerves and gut instinct tell me that there IS Really something more, believe i need to follow my gut. thanks for always sharing your heart. i adore you. hugs.

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