The Medically Complex Child and the ER

In a recent trip to the ER for what I KNEW was an unusual infection I experienced--yet again--SOP. Standard Operating Procedure.  I don't make ER runs for nothing.  After four years I know when Rhyse is experiencing symptoms beyond typical.  I recognize the changes in his behavior, skin color, urine output, formula tolerance, energy level, breathing pattern and oddly enough the smell of his vomit.  There's "just a virus" and then there is "an infection has taken over and he needs medical help now!"

After check in and vitals we were escorted to a room at the end of the hallway, in fact the room at the furthest end of the ward.  The isolation room.

Upon discharge from the NICU four years earlier, as a matter of procedure, Rhyse's arm was swabbed for MRSA.  To no surprise he tested positive. No wounds. Just a smattering of MRSA inconsequential to his health at that time, or any time really.  But the rule books say, "once diagnosed always diagnosed."  So isolation it is. Every time.

Enter doctor looking too young to practice medicine.  I'm 45.  But even I question the validity of a twenty - something doctor!  I feel old and tired and worn out by caregiving in the face of their  inexperienced hands, unwrinkled faces, and always, always crisp, shiny shoes.

I answer the same questions, again and again: "What is Noonan Syndrome? Just tell me quickly what it affects. How do you spell that?"

And then comes the words that clinch my guts, "it's probably just a virus". I verbalize with confidence, "it's not just a virus, it's an infection. Rhyse needs a CBC run, a urine dip, and a throat culture."  My words fall on deaf ears.  Mr. Young Doctor doesn't understand, "medically complex."

Two days later, no longer able to stay awake, Rhyse lay in my bed without moving for nearly tewnty-four hours. Despite free water on a continual feed he had no output.  Nothing.  And blood and colored fluid trickled out of his left ear and down his neck.

As you might have guessed I scooped up my son and made a beeline for his pediatrician.  Forget the ER. Thankfully Dr. W realized the seriousness of the situation immediately--one look and one smell told the story. A staph infection had taken over his entire body, from ears to bladder.

After three weeks and three antibiotics, Rhyse finally recovered.

I still clench my teeth at the memory.  If Mr. Young Doctor had listened, had understood medically complex Rhyse would not have gone through the worst case scenario, missed two weeks of school, and lost two pounds, two pounds he can't afford to lose.

The scenario is common, yet I don't know how to combat the ignorance.  Fortunately some hospitals--though just a few--are figuring out that something has to change.  Though the almighty dollar will keep most of our hospitals from creating departments within departments for kids like ours, I hope that with education, advocacy, and more and more caregivers voicing their experiences we can see a difference in how medical institutions govern care of our medically complex children.


Keep educating yourself and others, especially our doctors!



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