Advocacy Deafness

Posted by jael on Sep 16, 2010 in Education, Parenting, Spiritual Journey

I’m screaming in my head now.  Can’t they hear me?

God I’m cold!  Are they deaf?  (See Maternal Coat to hear why I’m chilly.)

You say I took the name in vain
I don’t even know the name
But if I did, well really, what’s it to you?
There’s a blaze of light
In every word
It doesn’t matter which you heard
The holy or the broken Hallelujah!

I thought that this meant only the best attendings would be doing those jobs.  Our experience in the heart cath lab the next morning made me aware that despite my best attempts to make our wishes for The Oldest Girl’s care clear, a miscommunication had occurred.  When The Oldest Girl’s cardiologist explained the heart catherization procedure, he noted that parents usually were asked to say goodbye to their children in their rooms because parents were not allowed in the cath lab.  This seemed more a rule of convenience rather than a necessary regulation.  I worked with the anesthesiologist who came to obtain our consent for the procedure for special permission for my husband and I to walk down with The Oldest Girl to the cath lab, and to remain present while she fell asleep.  We wanted to be with her to help her to stay calm, and to enjoy every moment we could have with her.  We did not know how she would respond to intubation or how long she would remain intubated, and knew that while intubated, we would not be able to hold her.

It turned out to be very fortuitous that I advocated for this exception to the rules.  Had I not, my expressed wishes for her care would have been denied.  The Oldest Girl’s heart cath was scheduled for 10:00 a.m.  At 11:30 a.m., after anxiety had bitten my throat with hungry tin fear the entire morning, we were informed that the delay was because the lab was waiting for the pediatric anesthesiologist who specialized in infant airways to arrive from another hospital.  Although I was frustrated by the wait, I was comforted that the best person available was going to perform The Oldest Girl’s intubation.  Shortly before noon, we were called to bring The Oldest Girl to the lab for her angiogram.  Initially, everything was cordial and dovetailed my expectations.  The heart cath nurse personified compassion as she introduced us to everyone and briefly oriented us to the room.  The attending anesthesiologist for whom we had waited reiterated the intubation procedure, and reminded us that we would not be allowed to remain after she fell asleep.  He then directed us to the procedure table and asked us to lay The Oldest Girl down.  When I did so, I noticed a young doctor, already in gloves at the head of the table.  The anesthesiologist introduced him as a senior resident.  Confusion heated my discomfort as I asked the attending who was going to perform The Oldest Girl’s intubation.  He did not answer me directly; instead he employed circumlocution to assure me that his expertise would be brought to bear.  In the beat that followed, he walked around the table to the medication tray to retrieve the syringe that would facilitate The Oldest Girl’s sleep.  My mind was a thunderstorm in the thirty odd seconds it took him to do so.  Competing thoughts struck across its sky and forebode danger.

Each thought flashed behind my eyes like lightning.  I knew I had to decide whether or not to challenge him, and I realized how little time I had.  I wanted to speak, yet felt that familiar good-girl pull to be quiet and respectful.  I felt betrayed by a system that had only given lip service to my requests about The Oldest Girl’s care.  I was worried if I spoke out that I would anger the team who, in moments, would be performing a procedure on my daughter’s heart and that their anger might breed mistakes.  I was concerned that other parents would not be able to enter the cath lab with their children if I handled the dynamic badly or caused a scene.  I was terrified that if I didn’t speak up that something bad might happen to The Oldest Girl.  I was painfully aware that the only reason they were intubating at all was because they were not certain how well her already compromised respiration would respond to anesthesia.  And I had ten more seconds to make up my mind.  I was her only lightning rod.  I knew I had to speak.  We had waited over an hour and a half for the best person available to arrive for the procedure and it was clear that even though he was in the room, he did not plan to perform the intubation.  The choice then was a simple one.  If the hospital had decided that we could not proceed in his absence, we could not proceed with the intubation if he was not the one to do it.  If the hospital had determined that the senior resident could not perform the procedure without him present, I certainly did not want him practicing his technique on my daughter’s uncertain airway.

“Sir,” I interjected as he completed his trip around the table and had positioned himself next to the senior resident at my girl’s head, “I want you to do it.”

“You don’t have to worry,” his elocution dismissed again, “we have it under control.”

“Sir,” I interjected again, this time with more force, “I’m telling you that I want you to do it,” I asserted, and this time, I looked directly into the attending’s eyes so there could be no mistake that I meant it and I meant him.

“I’m sorry, it’s nothing personal,” I said, this time looking into the senior resident’s eyes, “I only have one The Oldest Girl.”

The resident had not played enough of this type of poker to keep his frustration from his face.  He was pissed.  He wanted this procedure.  Neither he nor the attending acknowledged what I had said.  The resident asked for a mask, the attending injected the IV and she fell into a paralyzed sleep.  We were asked to leave.  Knowing that they only had minutes to perform the intubation before she was in jeopardy, I quickly kissed her forehead, took my husband’s hand and walked out of the room without knowing who would perform the procedure or how The Oldest Girl would be.

“Are you alright,” I heard a kind voice ask as we exited, “do you know your way back?”  I turned to see that the cath lab nurse had followed us out of the room.  “I promise I’ll make sure that he does it,” she comforted.

I was so numb by what had just happened that her words did not register.  “Did you hear what she said?” my husband asked.  “She promised.”

“Do you promise he’ll do it?” I asked, locking eyes with hers like keys to a promise, “I’m not trying to be a jerk, she’s my only daughter.”

“I would feel exactly the same way,” she assured me with eyes as soothing as her voice, “I’ll make sure he does it. ”

“Thank you,” was all I had time to say as she hurried back into the room.

I felt anesthetized myself as we returned to The Oldest Girl’s room to await news.  Like an old-fashioned switchboard, I was on overload.  My circuits could not handle one more incoming demand and I began to shut down.  It was not until the floor nurse relayed the initial report back from the cath lab that I started to feel again.  The first thing the cath lab nurse said in her message was to tell mom the attending did it.  Relief washed over me like a tide.  We were also assured that our girl was fine, but that access to the heart valves was proving difficult.  While we waited for the next update, I talked to my floor nurse about what we had experienced down in the lab.  She hypothesized that the reason the mix up happened was because the cardiology service is independent of the anesthesiology service, and that the information was not passed from one group of The Oldest Girl’s caregivers to another.  She said that I was the best insurance that my wishes about The Oldest Girl’s care were known to all of her doctors.  She helped me formalize and articulate a family treatment plan for The Oldest Girl’s care.  One stipulation required that we be informed who was doing procedures on The Oldest Girl before they occurred. Another stated that we did not give consent to medical students, interns or residents to do procedures on her.  I did not want another protocol misunderstanding to occur in my absence, like in the operating room where I would not be allowed to follow The Oldest Girl’s care personally.

I’ll stand before the Lord of Song
With nothing on my tongue (cuz the family treatment plan’s in writing, baby)but Hallelujah!

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