11 year old girl, cerebral palsy secondary to anoxic injury at birth, history of seizures and mental retardation, at baseline smiles and looks and makes her likes and dislikes known, but not much else. Now here because she's been throwing up after her G-tube feeds, tachypneic, and maybe has a little left lower lobe infiltrate on chest X-ray. The ER didn't do anything else. They were going to send her home except she was hypoxic on room air.
Walked into the room, mom was there and ready to answer questions. She looked sick but not sick to me, although things didn't look so hot - breathing 60 times a minute (try it, O Best Beloved), blood pressure low, in the 60-70 range, arms and legs a little cool. I got her started on antibiotics, drew catheterized urine, blood cultures, blood counts and electrolytes, asked them to call me when results were in.
I went home.
I was home for three hours before I went back in to transfer her to the ICU. Blood pressure not coming back up, labs in the basement - kidney failure, mostly - what sounded like a whopping urinary tract infection with 600 some white cells in the sample, still tachypneic and not responding to fluid boluses like she should. Heart rate 150's, too fast. I told them to call the attending. She called the intensivist. He declined to come in and see the kid, so at 2 AM she came in to help me.
We debated whether to intubate - decided not to, as long as she was maintaining her respirations - called the intensivist again. Again, he told us he'd be in if we intubated or if she deteriorated. As it was, she was stably critically ill. I drew another set of labs following her fluid boluses. Worse. Despite having had plenty of fluids, her kidney function was decreasing. She had a stomach full of coffee-ground residue and her hemoglobin was decreasing every few hours - likely because of her renal failure causing failure of everything else. Kidneys, after all, are possibly the most essential organ we possess. And the only thing to do for recalcitrant renal failure is dialyze.
It was 8 or 9 AM before we got hold of her mother. The telephone conversation was short: "K's not doing so well. She's in the ICU. Please come in." And here, O Best Beloved, is the hard part.
We do not do pediatric dialysis at our hospital. In order to dialyse a child, we have to send them to one of three hospitals, all 2-4 hours away. We should do pediatric dialysis. We have the equipment. It is, apparently, tied up in the bureaucracy.
They arrived from home, 45 minutes away, 30 minutes later. We took them into a little room and laid it all out. Her kidneys were failing. They weren't responding to the treatments we could offer. She had an infection, somewhere, we weren't sure where yet, but it was severe. We were treating it with antibiotics but she wasn't responding. She was still breathing hard, and eventually her breathing muscles were going to wear out. The situation was grim, and there were two ways we could go.
Option one: Intubate her, put her on blood pressure elevating drugs, call $childrens_hospital and get her on the ambulance down there for dialysis immediately. The likelihood, given her clinical situation and what we knew of it, that she would recover normal kidney function and not require long-term dialysis or transplant was small. The likelihood that she would be able to come off the ventilator was about even-odds. The probability of a full recovery was unknown. This, after all, is a child who is chronically ill enough to require G-tube feedings, cannot swallow without choking or aspirating, cannot control her bowel or her bladder. She is not well at baseline.
Option two: Continue present management - antibiotics, IV fluids at just enough to replace her normal fluid losses plus whatever urine she put out, oxygen and morphine for comfort - and stop escalating care. Make her a no code, make her comfortable, and wait.
We made a presentation of both options to the family, gave them the choice. Laid it out. We stepped out then, left them to talk. Within twenty minutes they'd called for the nurse.
She was staying here. To die.
It took two days, in the end; we called hospice and began setting up procedures to get her home with her family, but she died before we had it all set up. That morning I had transitioned her from IV fluids and morphine to G-tube fluids and morphine. We'd stopped the antibiotics that day. Cultures were negative. She wasn't getting any better - one more lab showed that, confirmed her critically ill status. It was all about waiting - getting her home if we could.
They called me that evening after clinic to let me know. I went back over to the hospital, sat down with the family, awaited the attending's arrival. We talked about the negative cultures and the lack of answers, the fact that we felt they'd made the right decisions, and the questions they had. The attending came in. We talked about organ donation.
Her father is a cop, has seen autopsies, feels - as many people not medical do - that they're brutal and dehumanizing. He's afraid of organ donation. He doesn't want it. But his brother died on the same day K was born, at 27, from heart failure - he couldn't get a transplant. He needed a transplant because he couldn't get a valve. Organ donation folks on the line - she's eligible to donate corneas and heart valves.
It was long and agonizing, watching him struggle, watching this grown man talk about seeing his comrades on the autopsy table, crying, talking about his daughter. But in the end, he signed the paperwork. "She should be allowed to do something good."
I don't know what to think, O Best Beloved. If she had been a "normal" child, O Best Beloved, things would have potentially played out quite differently. After all, for eleven years K's parents have been grieving the loss of the idealized "perfect daughter". Nothing is the same when you have children with chronic illnesses. Don't get me wrong - this is a girl who is clearly loved and cared for and adored by her family - but things are different, somehow. And they end differently. And how do you comfort parents when you understand something they don't?
For me, when they elected not to transfer her, it was not a bad decision. This was a child whose future was uncertain in the best of circumstances, and whose outcomes were dicy in this circumstance. By electing not to continue, they were electing not to continue to make the life she had miserable. She would never understand dialysis or the need for it. She would never be able to make a decision about her own options.
For her parents, it was tantamount to saying "We're going to let our daughter die" - which, somewhere in the depths of the mind, translates to killing her themselves. And that guilt can tear a family apart. It's not an easy decision, O Best Beloved, but I stand firm to what I told them - I think they made the right decision.
I'm going to stop here - before I detract from K's story by talking about my beliefs. I think it stands on its own. Rest in peace.