PATIENT EDUCATION PAMPHLET | Jenny Eleanor
Patient Education: Caring for your toddler with a rare medical illness as a pediatrician mom.
What is a pediatrician mom?
A pediatrician mom (PM) is someone who has studied medicine, can treat children of all ages, and is a mother.
What symptoms are associated with being a PM of a sick child?
PMs have confusion regarding their role in caring for their child. This may present as:
Subconsciously downplaying serious symptoms in her own child.
Compulsion to be the “good patient.”
Feeling shame and ambivalence about accessing care that is not as readily available to her own patients.
How can I care for my child as a PM?
Stay home with your child when febrile.
Early on this is challenging. Many PMs remain noncompliant with step 1.
You will not remember a single one of the 20 patients you treat if you go to work. You will remember the look of his glassy blue eyes following your path out the door from the couch, where he lay slumped, too weak to hold his pudgy head up, or even verbalize a resistance to your departure. When you drive the 30 minutes to the clinic, remember to suppress the tears so the highway isn't rendered blurry. Sobbing in your office, door closed, before seeing your first patient is acceptable. Your co-worker might wonder aloud if you should be there. But you both know she would do the same. There are more hospitalizations coming, perhaps even tomorrow, so you need to show up when you can.
Later in the day, when your favorite medical assistant casually asks, “How's your son?” as you are walking between the printer and room 5 you will start to feel like a two-year dormant labor contraction resurrected to ripple through you and detour to the back corner of the nursing station to blot your eyes with gauze (the first absorbent material you'll find there), pressing your back up against the cabinet with the syringes and vials of lidocaine, just so you don't fall over. Don't check your phone in that corner, because your partner will have texted back to your guilty, “How is he doing? Don't forget to redose the tylenol,” with “He’s ok mostly sad and asking for you.”
If your partner is not a pediatrician dad (PD) or mom, they will have trouble getting a toddler to swallow the Tylenol and continue sips of Pedialyte. (Aim the syringe to the back of mouth! Bribe him with gummy bears! No, it’s not ok that he has not urinated!) You'll be worried your partner will not recognize signs of sepsis or decompensation.
If not a PD/PM, your partner will not feel as qualified to talk to the surgeon, so you'll give the answering service your cell phone as the call back number, even though you are the one going to work. Recite a small prayer, or really a gamble, that the call back comes when you are between patient rooms, or at least not in the middle of a pelvic exam. When your cell phone finally vibrates in your pocket, ask the medical student to please check on the patient needing Albuterol in room 3, because if you don't pick up this call right now it could be four more hours before the surgeon can talk. You need to discuss if your own child needs to go to the emergency room for IV antibiotics and drainage, or if the surgeon is comfortable monitoring your child on oral antibiotics a few more days at home.
PMs will always feel the need to be the one to make these shared decisions with the surgeon, so if step 1 is not feasible for you, at least try to always choose a spot in the hallway with good reception.
Call in your child's antibiotics—no PM guilt.
You know what his infections look like. You know what antibiotic they will send. Just prescribe it yourself.
I am aware that others in the medical field and professional organizations will be aghast with this, and they will probably prohibit the publication of this pamphlet unless I remove this dubious recommendation. But when, for example, the on-call doctor sends the prescription to a pharmacy that is out of the antibiotic Augmentin (there could be a nationwide shortage!), you don't need to wait on hold in the nurse triage after hours to update your pharmacy on file. Order the Augmentin directly to another pharmacy yourself and have your child on the path to healing hours faster.
Stop waiting for after-hours nursing to return your call when your child is sick. Especially on the weekends. Untreated infections make surgery more challenging—don’t delay his care.
This part won’t seem morally compromising in retrospect, I promise.
Change your child’s primary care provider (PCP) to the most senior person in the practice.
You feel an alliance toward the young graduates. You identify with the younger doctors and recognize that older physicians have full panels already. It feels entitled to ask the senior physician to make an exception for your child, but you need to call in the favor, quickly.
While your child is on antibiotics for an infection and awaiting his third surgery, you will notice an engorged tick snuggled at the base of his posterior hairline, just as you are leaving for work. You will think I CAN’T HANDLE LYME DISEASE NOW TOO while calmly pulling it out with your red facial tweezers. You will call his doctor’s office to ask if he should start yet another antibiotic to prevent Lyme disease. The triage nurse will call back and report that the young graduate said, “It's up to mom; she's a doctor.” But a PM has decision fatigue and yet a boundless drive to research any additional treatment being offered to their own child. As such, you'll spend five hours after work hunched over your laptop at the kitchen table investigating if there is any data that Augmentin (which he is already on) can prevent Lyme disease as well as Doxycycline (which you could additionally start), and then reviewing the risks of chronic multiple antibiotics in young children (Diarrhea! Resistant infections! Inflammatory bowel disease later in life!).
Save yourself the five hours. You need your child’s PCP to be a confident older doctor who makes a firm recommendation, even to a PM. Perhaps you can then relieve yourself that night submerged in a bubble bath. With wine. Red. Big glass.
Consider leaving AMA (against medical advice).
The surgeon will start to hope if she leaves the surgical drain in his neck longer after the surgeries that the outcomes will be better. Though this is not evidence based, you appreciate the idea. Any idea to cure him! But if the suction isn't holding, and his drain is barely filling up, why are you still there? Hospitalized longer for a treatment that isn’t even functioning? Among all the buzzings and ringings and not sleeping? There is no expedited healing from a longer time attached to a malfunctioning post-surgical drain!
Let’s be honest—you’ll never leave AMA. As a PM, the roof would have to be actively falling on your child for you to do the unthinkable. AMA is the ultimate breakdown in the family-physician relationship. It's ethically distressing to medical teams when patients leave AMA. Will your child’s care suffer if you become “a difficult family?”
You will be the mother of a “good patient.” You will stay, even though this pamphlet has counseled you otherwise.
Ask the surgeon how many patients like your child she has treated.
If the answer is less than two, start looking for second opinions. Even though you know women surgeons have better outcomes (it's been scientifically studied!), and you, as a woman in medicine yourself, want to support women in medicine and give her that second and third chance at operating on your son, you should find someone well-versed in your child’s condition.
Your surgeon may encourage you to seek guidance elsewhere after surgery #4. This discussion should occur sooner. Maybe she doesn’t want to disappoint you, and you don’t want to insult her surgical abilities. (Bad outcomes could have happened with any surgeon! She came highly recommended by friends of friends!)
It’s a very nuanced conversation, but please attempt.
Find the world’s expert in your child’s condition.
Doing so may require using your PM connections—it's okay. Your uncle was a mechanic and used to fix your family’s car for free and even plowed the driveway for a mere cup of hot chocolate! Professional advantages and benefits are not unique to your career. Embrace insider access to second opinions.
If a doctor friend attends a conference where one of the world’s experts in your child’s condition is speaking and is able to curbside the doctor after his lecture, and the doctor not only gives him seasoned advice about your child, but also his personal cell phone should you have follow-up questions, call him! Call one of the world's experts!
Let your partner sleep in the hospital.
If your partner is the stronger sleeper and offers to let you leave the hospital after bedtime, enjoy a good night’s sleep.
You may fondly remember your years as a resident pre-rounding in the quiet morning hours, when the hospital was just beginning to bubble. A warmth used to infuse your tired body as you maneuvered quietly around the still sleeping parents, spooned tightly in their day clothes on the too small foldout sleeper chair by their child's bedside. You were probably single (or in one of those on-again-off-again romances of youth) and thought these glimpses of clinging intimacy aspirational.
But actually, your partner offering to sleep in the hospital alone, under the scratchy thin hospital blanket, and walk your whimpering child—leashed awkwardly by his securely attached IV pole slowly dispensing its antibiotics, as he tries not to trip over his too large hospital gown, while ignoring the incessant beeping of the now disconnected heart rate monitor, which flashes its alert throughout the dark room like some mutant disco ball—from the toddler bed to the bathroom at 3 a.m., and then hold up his gown and the dangling lead wires attached to his little chest, as he pees and cries simultaneously, “these hurt me Dada,” while you sleep soundly in the old attic of a friend’s parents’ house, and then, months later, soundly at the Ronald McDonald house—when you fly halfway across the country for a cure—is an intimacy of its own genre.
Can any of the PM anxiety be prevented?
Yes. There are ways to mitigate the associated symptoms. The best things you can do are:
Call your best friend daily to check in.
Find a good therapist.
Consider a sleep medicine and/or antidepressant.
Exercise as able.
Take a writing class.
Disclaimer: This information is a limited summary of diagnosis, treatment and prevention information. It is not meant to be comprehensive and does NOT include all information about this condition, its treatment or the risks that may apply to the specific mother. It is not intended to be medical advice or a substitute for a health care provider's examination and assessment of a PM’s specific and unique circumstances.
Jenny Eleanor is a pediatrician mom writing and reading about the intersection of motherhood and doctoring. She is working on essays about navigating the duality of being a pediatrician and having a son with a complicated medical illness. She also likes thinking about the complexity of human relationships, and making some meaning and art out of our messy and transient time here on earth.