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When you Treat a Rare Patient Like a Common One Bad Things Happen

OCTOBER 11, 2016
I have been livid for the past few days - boiling past the point of being able to think rationally. I started writing about what happened to my daughter, Ilana this week numerous times. Each draft only conveyed anger.

 

Those first drafts were not helping me, my daughter, or the other millions of people suffering from the carelessness of a healthcare worker.
 
Yesterday I found inspiration. And it was with an administrative office worker. Go figure!

I called the administration office of the hospital Ilana has been in for the past week.  The same hospital that she will be staying in for a couple more weeks due to the negligence of a doctor. I spoke with the administrative assistant and asked for some help in the process of lodging a complaint. She took down my information and my daughter's information and listened as I explained our ordeal. I said I wanted to speak with the doctor. She said she would personally handle it.
 
Ilana had a visit from risk management that same morning, where she went over in detail her ordeal.

It all started with a hurricane

Hurricane Matthew came to our town just when Ilana was having problems with her port.  To make sure she was safe, they put her in the hospital to ride out the storm. That was the last good thing that happened.  When the storm hit, Ilana was removed from her room without any notice, while the hospital was on lock down
and left alone in a hallway for over fifteen minutes crying as the winds howled around her, until she was "found" by a hospital employee who asked her what she was waiting for.
 
The employee apologized and took her to the right place to wait for a procedure she wasn't supposed to have until after the storm.
 
Ilana met this doctor for the first time during this chaos and was told that she would be getting a local anesthetic for a procedure she had already confirmed would be done under general anesthesia.
 
General anesthesia was requested and confirmed for the removal of her port because of the active infection and the difficulty that was expected from her history of lyses of adhesions.
 
 According to this doctor, the procedure was a simple one and would be over in five minutes. Ilana was told to sign paperwork and then she was left alone again to wait. During that time, she had an anxiety attack and when the doctor came to get her she told her that she again did not want the procedure unless she had general anesthesia. Her request was ignored, she was prepped for the procedure and given shots of novocaine.
 
With the first cut she screamed that she could feel it and was given more novocaine. She felt the pulling and pushing and tugging as the doctor tried to break lose the port that had been inside of her chest for over two years. Ilana whimpered and cried and screamed and after fifteen minutes, was given a sedative that made her head spin. But she still felt all the pain.
 
They closed her up (with an active infection) and sent her back to her room. She was alone in the room hysterical crying and shaking and cold before two nurses that she interacted with daily happened by and came in to help her. Three days later her port site developed an abscess and she needed surgery again. She now has an open wound that needs twice daily painful cleanings and IV antibiotics.
 
Why the doctor ignored my daughter’s pleas for a general anesthetic, why the doctors felt the need to perform surgery during a hurricane, and why the doctor didn’t take the time to look at the entire patient rather than just the port has yet to be explained.
 
And I am still angry.

Next Steps

I didn't hear back from the administrator today so I called to see what was happening. I was told that risk management gathered the information and I should expect to receive a call.
 
 Within minutes the call came - risk management explained that the situation was being investigated and that the hospital board was meeting on Monday to go over next steps.
 
I told her the next steps I wanted the doctor who performed the procedure to:
  • be bedside as they clean my daughters wound
  • understand the rare disease my daughter has
  • see the impact of her actions on the patient she was negligent with
  • but most of all, learn that all patients are "real" people and not slabs of meat that you cut into without listening to their voices and their concerns.

I told her point blank that I don't want to sue them.
 
No amount of money can take away the anger when I think of my daughter alone screaming for her rights to deaf ears. If this horror show can be a catalyst to effect positive change, than I can live with that.
 
What I can't live with is knowing that she would continue her career without seeing what she did to my daughter.
 
I'll let you know what the hospitals decision is.


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