Two neurological residents stood at the side of my mother’s bed. One said “everybody leave we are going to do a lumbar tap”. We all stood up to leave, before the resident added “except the daughter”.
I stayed.
When everyone left, I asked “Why should I stay?”, he replied “Because you calm your mother down.”
After she laid down on the bed, the senior resident instructed the junior resident to hold Mom’s legs in a certain way. The senior resident, positioned the needle, slid it in, got nothing, and then looked at the junior resident, and said “no you’re holding her wrong, let’s try again.”
He instructed the junior resident again, the junior resident held her legs, the senior resident tried with the needle, and got no fluid again.
Again he looked at the junior resident and said “no you’re holding her wrong, let’s try again.”
And again they tried.
I lost count of the times they tried. I wanted the lumber tap to work. I knew it was happening, and I knew it was an important diagnostic test to see if Mom had Normal Pressure Hydrocephalus. I knew that if she regained abilities for the week it was in, that she would be diagnosed with NPH, and if she didn’t regain any abilities, she would have something else. I knew we wanted her to have NPH because NPH was treatable. Other differentials… not so much.
I knew that I had the power to say “no you can’t keep hurting my mother”, but I also knew without this test, she’d never be diagnosed and therefor never be treated.
So I watched, while my mother was repeatedly put in pain, and I prayed about what to do. How do I advocate for my mother and work with the resident as a team? How do I not make this a “fight”.
After several tries I asked “Isn’t there another way? Can we make this easier”.
The resident looked at me, and said he wanted to try again. The junior resident again quit doing his job before he should have.
Finally, between tries, I raised my hand and said “stop”. Both residents looked at me. “I’m going to go get someone else, don’t do anything while I’m gone.”
I marched out of the room, introduced myself to somebody I thought was a nurse and asked if she could help with the procedure. She said she’d be glad to.
The new person followed me into Mom’s hospital room. When we got there I turned to the junior resident and said “You can go now. I got somebody else who will do your job.” He said nothing, but looked to the senior resident.
The senior resident said “You heard her, she doesn’t want you here.”
He looked at the new person, and she said “When a patient or family member says you have to go, you have to go, so go.”
I told him to leave and never come back. I did not want him making mistakes on my mother again.
He turned and left the room.
I turned to the new person and introduced her to the senior resident. She said “We know each other. We’re in the same residents program.” I apologized for thinking she was a nurse. She was understanding. The senior resident explained what he was trying to do. The new resident, and the senior resident did it together. It took one try.
Mom’s lumbar tap was in. It stayed in for 7 days. During that time, she was able to sit up, have conversations beyond basic bodily functions, look out the window without getting a headache, and walk down the hall with assistance from a physiotherapist. These were all things she couldn’t do before.
And then the lumbar tap was taken out. Very quickly she lost all the function she had regained.
___
I felt like I was in the movie Awakenings with Robert De Niro and Robin Williams. In that movie, a comatose patient is given a drug that restores all functions. When it is taken away, he becomes comatose again. His mother is informed that he will never get the drug again, because it is not approved.
I felt like that. My mother had returned to us. For one short week, she regained all of her abilities. And then she lost them. Her ventricles had expanded because of excess cerebral spinal fluid, and she was right back to where she was before the spinal tap.
It was obvious. She had normal pressure hydrocephalus. She needed shunt surgery.
But… The neurosurgeon wasn’t ready to do it. He wanted to “wait and see how bad she would get”. I wasn’t a brain surgeon, but I knew that the more damage to her brain, the less it would recover. I knew that he had to do the surgery now. But he wouldn’t. I argued. I told them I felt like I was in the movie awakenings. I learned everything I could about NPH. I asked questions, I listened, I read, I did everything I could. But the answer was “wait and see”. Wait and see what? To see if she will die?
Then I demanded she be moved to another hospital.
Once she got to the next hospital, the doctor took one look at her, and said “Why hasn’t she had surgery?”.
“I don’t know.”
“I know a doctor who can do this surgery. He’s very good, and he likes to do shunts. Can I contact him?”
“Yes”.
Within a week it was decided she would have the surgery.
___
100 days after Mom entered the first hospital, she left the second hospital able to walk, and resume the life she had left a year before.
The fight to get her better was over.
____
The fight may have been over, but she will still have regular shunt adjustments with the second neurosurgeon. She will need to see him all her life, but she’s not bedridden. And that is so much better.
_
Why am I telling you this very shortened version of one of my mother’s medical stories?
Because last week I realized that in many of my blog posts I talk about “fighting” with doctors and being an “advocate” for patients (myself and family).
Those are adversarial words, and I realized that with those words, I might be pushing away the very people I want to read this blog.
I’m sorry. I’m sorry to anybody who has read those words and statements and have been offended. I’m sorry for anybody who read them and thought “I’m doing the best I can.”
I know there is doctor burnout, and I know that when you are dealing with a patient, you might be thinking about what goes on at home, or you might be so drained from something unrelated to the patient, that you just can’t think. You might need to go away and think or cry or vent to somebody else.
I get that. As I said in one of my previous posts, I understand, just a tiny bit of what it’s like to work with dying patients.
And I’m sorry, that sometimes it seems those very patients are fighting against you.
I’m sorry and I don’t know what to do about it, because if I had to go back in time, I would do that very same thing again. I would change just one thing: I would evict the junior resident sooner.
____
My Dad is dying. The tears are so close to my eyes now, and it seems it doesn’t take much to make me cry. I love my father, and I don’t want him to die.
I don’t want fight with any doctors or medical personal. I want to work with them.
And right now, as I write this I don’t have the answers. I’m hurt and in pain.
And I don’t know what else to say or do.
———
If you want to see an animation I made about my mother’s medical story, see this link: https://youtu.be/uRox_Wnv6zQ
Christmas in the ICU 