The Notebook
We’re seeing a patient on endocrine consults who can’t regulate his sodium following brain surgery. I’m taking care of adults this month but he’s only 20 and his Mom does most of the talking in the room. The first day I meet them we’re only a few minutes into our conversation when she pulls out a worn spiral-bound notebook that I can see from across the room is full of pages and pages of cramped, furiously-scribbled notations. I’m surprised by how viscerally I react.
I know this notebook well. Last month I spent 6 straight weeks in the PICU. I conclude at the end of the month that there’s no place in the hospital as full of suffering as the pediatric intensive care unit. The parents are devastated: they shriek and panic and fall apart in front of me. I become adept at placing one comforting hand on a shoulder and using the other to grab the nearest chair, gently guiding the parent to seated (syncope is a common and generally avoidable occurrence here). One morning we round for hours with the steady wailing of a brand-new mother in the background. She delivered without ever attending a prenatal appointment. I find that parents’ grief is almost always flavored with anger, or guilt, or some confusing, human combination of the two.
The parents’ suffering is unmistakable. They do not ‘give up’ on their children-- they cannot. For 6 weeks I watch the vigil one Mom keeps over her 5-year-old. Her respiratory failure is so severe that even the ventilator can’t keep up. In some cases, we offer ECMO, which uses two surgically-placed catheters to drain the blood from the body, oxygenate it using a machine, and then return it to circulation, effectively bypassing the lungs. The decision to offer ECMO is a complicated one. It is an incredibly money- and resource-intensive intervention with significant morbidity, and most critically ill patients will die on it. The prevailing logic is that it should only be offered when we anticipate patients have a ‘reversible’ injury that they will recover from in a relatively short period of time (the longer a patient remains on ECMO the more likely they are to have a stroke, or other kinds of organ failure). We don’t know the cause of this 5yo’s respiratory failure so the argument is made that it could be reversible and that ECMO should be offered. It is, and she’s on it for 6 weeks. The team is divided. She shows no signs of getting better. We order medicines and infusions that cost thousands and tens-of-thousands of dollars apiece. Statistically, no one think she will survive this. We bicker over her lab values, her treatments, her oxygen and CRRT goals. The phrase “arranging the desk chairs on the Titanic” etches itself into my skull those 6 weeks. But her mother can’t give up. She won’t. The dynamic between the family and the team becomes vaguely adversarial at times. We often feel like we are being forced to torture a child that we know is almost certainly going to die. But children are difficulty to prognosticate about, and every so often they make miraculous recoveries, and so the parents hold out hope. And we consider that there is some sliver of a chance that she recovers. And so we do as we are told. One late night on my way to the cafeteria I see the child’s mother hunched in the hallway, bolting down a hot-dog just outside the doors to our PICU (food isn’t allowed inside, and there are no bathrooms for family inside the badge-swipe-gated doors either). She looks exhausted and famished and oddly guilty when our eyes meet, mid-bite. My heart breaks. The mother suffers. The child suffers. We press on, presenting our numbers and vent settings and rattling off the mile-long list of medicines she’s on every morning, resenting the Unit and the Family but probably mostly just resenting God and this God-forsaken place.
The parents suffer. The child suffers, in spite of but often because of us. With adults there is sometimes a moment of relief when we switch from aggressive interventions to comfort-focused care. After years of hospitalizations and side-effect-laden medicines and painful procedures, the patient rests. I get to see the family exhale. The patient opens their eyes, in a moment of lucidity, and says, softy “no more.” We listen. We are liberated from our treatment goals.
This moment rarely comes for children. There is no exhale. There is only a white-knuckled do-everything that seems to last until the very end.
And so I meet The Notebook. It usually sits on the bedside table, within easy reach of the parents. When we mention new medicines, changed doses, or trending lab values, the notebook comes out. My words get transcribed word-for-word often, and if there’s time I pause, spelling things and repeating phrases. Most families with chronically sick kids are well-accustomed to the frantic pace at which we conduct rounds and so their scribbles are hazy, misspelled, phonetic interpretations of the bizarre medical language we speak and only sometimes translate.
They flip back nervously, looking for evidence that their child has been on this medicine before. They know the patience of the medical team wears thin and so the page-turning becomes frantic. Somewhere in their notebook they are sure they have an answer to whatever today’s issue is: uncontrolled secretions, vomiting with the tube feeds, flushing skin after an antibiotic. It’s hard to watch.
The parents of chronically-ill children are often the most complete medical records we have. They know this and so police our treatments carefully, quick to interject if their child has had a problem with our proposed treatments. As the medical team, we feel complicated: we rely on these parents and their exhaustive lists. They coordinate the 15 specialists, fill the meds, know how their child best tolerates their feeds, know which meds best control secretions. But like all people, they are prone to all kinds of bias. My criteria for an ‘allergic reaction’ is strictly defined by a histamine-mediated response causing a certain set of symptoms. My patients’ parents criteria often feels like anything that correlates to a bad day, a weird look on their face, or an unexplained episodes of vomiting. They collect all of the information meticulously, scribbling in their notebooks, but it’s not always clear which information is important.
On bad, cynical days, I often think that we create monsters in the parents of chronically-ill children. They have learned that making demands, throwing tantrums, and raising their voice tends to bludgeon the team into doing what they what: prescribing antibiotics we feel are unnecessarily, keeping patients in the hospital who are ready for discharge, avoiding treatments that could be beneficial. If a patient’s safety is truly being compromised usually someone puts their foot down, but we make compromises all the time that feel ridiculous. At one rapid response, we can’t get a 7-yo neurologically devastated child’s oxygen saturation up out of the mid-80s. The primary and intensivist team quickly runs through the utility of different interventions in a medically urgent scenario-- if her oxygen saturation continues to fall, she could die in minutes. Upset that she’s not being listened to, the Mom piercingly dog-whistles at us to give us a piece of information that is irrelevant and unhelpful. We listen, calmly, placate her, and continue on with our discussion.
Afterwards, on returning to the PICU, I get angry. I do not intend to be whistled at like a dog in my adult life: not by men, not by strangers, not by my patients. 6 weeks of being treated poorly by parents starts to wear you thin. Their frustration and poor behavior is explainable, and each time I reach inside my reservoir of patience (filled on the occasional day off and unfortunately hoarded for my patients at the expense of those I love) and smile calmly, waiting for the tirade to end, but it gets old.
So when my patient’s mother pulls out the notebook, I both flinch and tear up. I can read her anxiety from across the door. I know intimately this impulse to record as an attempt to exercise control over the situation, control which I know will not be afforded to her this hospital stay. Her child’s short-term memory has not been the same since the surgery and he looks at her, worried, when we ask him basic questions. She rushes to answer them, trying to soothe him, promising over and over that it’s just temporary, that he’s still recovering. I don’t know that it is. I don’t know that he will. I know that there will be many, many questions that come from this notebook that we will patiently answer, and that our answers won’t change a thing.












