Be An Advocate: A loved One's Life May Depend On It

My sister had a double mastectomy almost 10 years ago. She was diagnosed with Stage 3B breast cancer and once she received the diagnosis, it seemed as though the surgery and treatment began faster than the speed of light. The patient and the family doesn't have enough time to research and absorb the news once the patient is given the news. 

I just wrote on Sarah Elkins buzz that I would love to attend her conference, "No Longer Virtual," because I've always thought I'd love to become a patient advocate after all the (excuse me for saying this), botched medical experiences I've been through with not just my sister but other family members as well. For the sake of time, I will just write about my sister's experience.  Before I go on, let me just say that Sarah's enthusiasm invigorated me! Please make sure to click on the links to her buzz and make sure to watch the youtube video, it won't bore you, I promise, Chris Spurvey interviewed Sarah and I felt like I was listening to my own friends chat when I watched the video. 

What happened to my sister that reinforced my thoughts that I'd love to be a Patient Advocate?

After my sister had her mastectomy which took 5 hours because she opted for implants, she was in so much pain in her chest and her heart rate was extremely high, they decided to admit her to the Intensive Care Unit at the Cleveland Clinic Foundation in Cleveland, Ohio. The Doctors determined the next morning that her pain was due to the expanders the plastic surgeon put in and they sent her a post surgical floor. I went to Cleveland for two reasons- To be there during my sister's surgery and babysit her children while she was in the hospital. I'm so glad I was there. 

My sister's husband had been with her for over 36 hours straight by the time I arrived to visit while their kids were in school. I noticed as soon as I walked into the room she looked ashen and her pain was immense. She was very weak and she would stop breathing every minute or so. I asked my brother in law if the Nursing staff was aware of her apnea (breaks in breathing pattern) and he told me yes, they told us to "just keep stroking her arm and remind her to breathe, " so we did. She was semi-alert when we did this and would take breaths after stroking her arm and reminding her to breathe. 

My brother in law decided it was OK to leave the room and grab some coffee

I agreed with my brother in law and told him to take a break because he needed to take care of himself too. My sister wasn't  hooked up to a heart monitor or even a Oxygen Sat monitor and that did concern me. Within 3-4 minutes of my brother in law leaving for coffee my sister stopped breathing again. This time a stroke of the arm, reminding her to breathe and even a nudge or two of her upper arm, along with me almost screaming, 'Michelle, BREATHE!!," didn't stir her. My sister's eyes began to roll and her lips were just beginning to turn blue, she still wasn't breathing! The door to her room was a very thick Walnut door and the staff kept closing it. I ran to the door and shouted, "My sister isn't breathing!" As soon as I shouted those words an entire staff of people came running into the room with a crash cart. I was told to step outside. A flood of emotions overcame me and I thought I was going to pass out. A nurse must have noticed I didn't look right and asked if I was ok? I smiled and told her yes... just nervous and I asked for a can of sprite. I felt like I was going to pass out from fear but knew I had to hold it together for my sister and her husband. When I was in the hall my brother in law exited the elevator with his coffee and a sense of relief on his face which was short lived. I told him what happened and he bolted into the room. 

So what happened?

It's hard to remember but I believe in under 10 minutes my brother in law walked down to the Atrium I was waiting in and told me that she was alert and breathing on her own. I have to admit, the time waiting seemed like hours. I asked him what happened and he told me she reacted to the Morphine and they gave her a drug to reverse the effects. I was relieved but internally still feeling apprehensive and cautious. We found out later that my sister was switched to a Morphine pump, instead of a Morphine drip. They never removed the Morphine drip and once she was given the pump her body overdosed on Morphine.  After their mistake she was told no pain medications for 8 hours, my sister cried and she doesn't cry easily. 

What might have happened if I wasn't with her?

Considering my sister had no monitoring of her blood pressure, heart rate, respiratory rate or Oxygen Saturation- all monitors which will beep and alert the nursing station, if she would have been alone, she could have died. I know that sounds so fatalistic but it's the truth. My sister went into Respiratory arrest which if untreated immediately as it was, could have led to Cardiac Arrest.  Luckily someone was with her and a drug named Narcan reversed the 'error.' 

The Lesson

If it's possible always be there with your loved one when they are going through a procedure and/or hospitalized. Mistakes happen a lot because hospitals are under-staffed. If a family member is unable to be present ask a friend. 

• Take notes and ask a lot of questions prior to the procedure.
• I always research the meds too - and write down the dosages and when they have been given. (Thanks for reminder Irene Hackett)
  
• Ask what medications are being given and keep a list of those too. 
• Don't be afraid to question the Doctor or Nurses about any questions you may have. No question is stupid even if some appear annoyed because you ask. 
• Ask what to expect prior to and after a procedure. If a person is in for an illness don't be afraid to read up on it and pose questions if you feel your loved one is not obtaining the results that may be fairly common. 
• Remember- Be informed and again, NO question is stupid

My sister's recovery was slow and they discharged her 4 days after her surgery. At least she was alert and breathing without incident after "the incident."  

I'm curious if anyone else has been in a situation where they had to advocate on behalf of their loved one?  Advocating could be something as simple as, she needs a bedpan, she's thirsty, I think we need a consult for Physical Therapy or Occupational Therapy, did they do her bloodwork today, and what were the results, does she have any tests ordered that we aren't aware of, what type of diet is she on, She needs turned, it's been over 3 hours since she was last turned... and on the list can go.  Many times ( I initially wrote sometimes) a patient is discharged before they are ready to go home, so if you feel your loved one needs more inpatient care, demand it. If you refuse the discharge on their behalf, the staff must file an appeal to Insurance for a longer stay. Once you ask for an appeal, they automatically have 3 more days as an inpatient. Worst case scenario: If you don't file an appeal and they are discharged before they should be, go right to ER and 9 times out of 10, your loved one will be re-admitted. 

Remember, Doctors and Nurses are human and all humans make errors. Some make more errors than they should. Never assume that your loved one is in good hands while all alone in the hospital. That could be a fatal mistake. 

My sister and her husband, photo Credit: Lisa Gallagher: July of 2015