I received our first U.S. post mail letter from a prospective preschool. I knew it couldn’t possibly be an acceptance letter so early in the year, but, nevertheless, I opened it with excitement. Bleh. Thank you for your donation (application fee) to our scholarship fund and here are (like six) reasons your child is unlikely to be admitted (legacy, not the right diversity fit, etc.). You will be hearing from us. Ahem, I think we already did.
This whole preschool business is not what I really want to talk about, though. This week foremost on my mind is the complexity of navigating the medical system as an advocate for my child, when communication with my child’s medical team goes awry. Let me try to tell this convoluted story.
First a little history on my search for a good pediatric practice. Post-birth Papaya was seen at a small family practice near my then-work, about 45 minutes away from home. The distance from home and the fact that Papaya frequently required out-of-network services made it necessary to change practices. Papaya’s second pediatric doctor was at a practice only ten minutes from home, but she conducted appointments standing and with a laptop in her hands; she looked at the laptop as she asked questions, as well as when she listened to answers. Papaya’s third and current doctor is in a practice twenty minutes away. She squats in order to greet Papaya, has lots of toys in her bright and inviting office, and takes time to sit and talk.
As a baby Papaya’s medical history was complicated. At the age of six months she suddenly developed GI problems and was frequently seen at a children’s hospital for unremitting vomiting and diarrhea. During the course of this illness she also experienced urinary tract infections and was discovered with development dysplasia of the hip (for which she wore a rhino brace for many months). We landed at our current practice when Papaya was eighteen months old. She immediately underwent an invasive procedure called fluoroscopic voiding cystourethrogram (VCUG) to determine whether her bladder was anatomically correct because by that age she had already been diagnosed twice with UTIs. UTIs in babies are rare and a red flag for vesicoureteral reflux (VUR, or, in lay person’s terms, urinary reflux). Fortunately Papaya does not have that condition. Her UTIs were attributed to the chronic diarrhea she was experiencing.
Now a little subtext on ADLs. In the mental health and medical fields, ADLs is short for “activities of daily living.” This is almost always code for poor personal hygiene. I remember ADL conversations that I used to have with a schizophrenic client of whom I was particularly fond. Because she was delusional at baseline, our therapy was focused on skills-based education. This client of mine, in her 50s, had a serious ADL problem; she came to therapy sessions in clothes stained with dried feces and urine. Fortunately, our therapeutic relationship was a good one, and even in her delusional state she could hear my straight-talk about her personal hygiene. Although it hurt her feelings, she could stay in a conversation with me about it and then attend to her ADLs for periods of time until the delusions got the better of her again (and we would start over).
I haven’t thought much about “ADLs” since I stopped working outside the home as a social worker. Then today my child’s pediatrician challenged me about my daughter’s ADLs. Whoa.
Papaya decided after Christmas that she was going to start wearing big girl underpants. Her self-initiated potty training took off at home. However, by the beginning of February she began complaining intermittently of pain after peeing. My husband called the doctor, who wasn’t available, so he spoke to the nurse. She informed him that this kind of pain complaint is common among toddler girls who are potty training. She explained that it is typically caused by either too much cleaning or too little cleaning of the inside of the vagina. We didn’t think either excesses were happening at home but worried that under-cleaning might be happening at her home-based toddler program; the teacher is an advocate of a toddler’s complete self-reliance regarding potty training.
The nurse said not to pressure Papaya to potty train. My husband explained that we have never pressured her about it and that Papaya had initiated her own potty training. She advised giving Papaya multiple baths throughout the day and bringing her in for examination the next morning if by that time Papaya’s complaints of pain still persisted. Since Papaya stopped complaining of pain after a couple of baths, we didn’t bring her in the next day, which was a Sunday.
We sent Papaya to school on Monday morning hopeful that she was on the mend, but at school she seemed to experience urinary incontinence all morning. The loss of bladder control didn’t resolve despite many baths that afternoon and night, so the first thing Tuesday morning I called the doctor. I didn’t get a call back. I called at noon again and left another message. I still didn’t hear back.
Then late in the afternoon I finally heard back from the nurse. I explained that I had been waiting all day to hear back from either her or the doctor. She responded sharply that I had not brought Papaya in on Sunday for a urinalysis or returned her phone calls. I explained that neither my husband nor I had scheduled an appointment for Sunday or any other day yet, and that I had not received any calls from her. She said she had told my husband on Saturday to bring Papaya in on Sunday and had followed up with two phone calls that were never returned. I answered that I had heard my husband’s end of his conversation with her on Saturday and nothing he had said then indicated an appointment was expected the next morning; in fact, I distinctly remembered him saying to her that it was his understanding that he did not have to call the next day if Papaya’s complaints stopped after the baths. As for not returning her calls, I reiterated that I hadn’t received any, at which point she said she had probably left them on my husband’s phone. (Later I learned from my husband that the phone messages she had left him had not required responses: her first message was one sentence announcing her arrival at the clinic; her second message was one sentence announcing her departure.)
I described Papaya’s lack of bladder control the day before and also some during the morning. She said I was describing urinary incontinence and needed to rush Papaya in for urinalysis. She asked me to bring Papaya’s pee. That wasn’t going to happen: Papaya was sound asleep (afternoon nap) and also didn’t pee on demand. She asked me to stuff Papaya’s diaper with cotton balls so that urine could be squeezed out of those cotton balls and used for urinalysis.
Papaya arrived to the appointment with a dry diaper. She was given water to drink and, to my relief, urinated a small amount relatively quickly. The nurse removed a few wet cotton balls from her diaper and then asked me to wait with Papaya until the results were known. Sometime later she returned with the results, as well as with Papaya’s doctor. Both women looked grim. The nurse stated that the urine test showed a high bacteria count. She said it was essential to get a clean catch sample of Papaya’s urine in order to rule out UTI. Papaya’s doctor shook her head in agreement. Her expression was solemn.
Their concern was reasonable given Papaya’s history, but I vacillated about whether to try to get the clean catch at home (the doctor suggested locking myself and a naked Papaya into the bathroom and playing for a couple of hours until she peed) or have Papaya catheterized there. On the one hand the doctor expressed support for the idea of taking her home to try to get the clean catch urine, and on the other hand the doctor stated that I needed to be aware that even if I was able to get a clean catch from her, if that clean catch showed a high bacteria count, they would have to catheterize her anyway. Well, put that way, it seemed like a no brainer to have her catheterized then.
As I sat there thinking about what to do, the two women reiterated that I should back off on potty training. Regrettably, I didn’t have the wherewithal to ask them about their continued talk about Papaya being pressured to potty train. I was solely focused on the decision I had to make. I didn’t want to subject Papaya to the terribly invasive procedure again, but I had no confidence that I could get a clean catch from her at home, and I didn’t want to have to bring her back for a repeat of this agonizing process. So, I gave consent. It was predictably awful.
And maybe unnecessary, too, since urine squeezed out of cotton balls stuffed into a used diaper was bound to show a high bacteria count. My husband disagrees with me on this point. He thinks a catheterization was necessary to rule out UTI. I am comforted by his confidence in this medical decision. He called forty-eight hours later to learn the test result. The nurse informed him that it was negative and instructed him to start washing the inside of Papaya’s vagina with soap and to stop potty training. My husband was surprised all over again by her feedback.
When my husband reported this conversation to me, the good news about Papaya not having a UTI was overshadowed by my upset over their continued insistence on viewing the situation contrary to our reporting about it.
The next day Papaya spiked a high fever (103, which actually isn’t that high for her, given her history of climbing right shy of 105). That night Papaya woke up in the middle of the night saying she had to pee in the potty. She did, and then she began screaming. “Help! Help! My vagina hurts!” Her body was shaking. Using hot baths and Tylenol, we saw her though the night.
In the morning I spoke to Papaya’s doctor, who responded, “We know she doesn’t have a UTI, so that changes everything.”
She said urethritis and vaginitis were causing the pain and advised the use of 1% Hydrocortisone inside Papaya’s vagina, salve on the external parts, and baths throughout the day, as well as (drum roll…) cessation of potty training.
This morning I received an unsolicited phone call from her doctor, who called to check on Papaya. I relayed that Papaya had woken during the early morning hours complaining of pain and requesting a bath again, but overall seemed to be healing, as she had not had another panicked pain meltdown. I asked how long these kinds of symptoms persisted in toddler girls. The doctor answered in a way that blindsided me. She said it could clear up in a matter of days or a lot longer depending on how clean or not I keep her.
I beg your pardon?
Me: “Help me understand what you mean by ‘how clean I keep her’”
Doctor: “Look, she was dirty. Clean her vagina with soap. Make sure you rinse her thoroughly and then have her sit in a bath.”
Me: “I do all these things, except for the soap. My entire life I’ve been told not to put soap into my vagina.”
Doctor: “But Papaya was really dirty down there, which is why soap is warranted.”
Me: “Dirty how? Help me understand what you mean by ‘dirty.’”
Doctor: “There were pieces of toilet paper inside her.”
Me: “But I don’t use toilet paper to clean her. I never have. With her history, I recognize that stuck pieces of toilet paper could collect bacteria and make her sick. Maybe what you saw were pieces of the cotton balls that the nurse had me put in her diaper before arriving that evening?”
Silence, a rather pregnant one.
Doctor: “Ohhh… I forgot about the cotton balls.” Long pause and then: “Yes, I probably did see pieces of cotton ball inside her then. But the point is, she was dirty, and you have to keep her clean.”
Internal dialogue: I do!!! Are pieces of cotton ball the criteria for dirty? Did you notice something else besides cotton balls that made you think Papaya was dirty? My gosh, your treatment advice is based on the belief that my Papaya has poor ADLs!!! You might even be assuming that Papaya got those prior UTIs because I didn’t keep her clean!!!
If you knew me, you’d know that cleanliness is very important to me. My cultural background demands this of me. It is a shoe taking-off and bathing culture. People take their shoes off before they enter schools, hospitals, and government buildings. Public bath houses speckle cities. Bathing in hot tubs is a national ritual. Most Japanese mothers take impeccable physical care of their children, especially in the early years. I was put in a bath every night of my early childhood, just as my daughter is bathed every night. If you knew me you’d know that my child’s hygiene is impeccable and that a negative assumption like this would be deeply insulting.
I think back to those conversations I had with my schizophrenic client and remember her upset. I had gently and accurately described what I saw and smelled on her person, and it still had hurt her. I could not imagine addressing ADLs in any way but accurately and gently, yet today I was addressed inaccurately on my daughter’s ADLs. As for pediatric practices, I am learning that good parental communication skills and advocacy are paramount. My husband and I have not yet decided how we will address our concerns, but rest assured that we will. There is much that is good about this doctor and the practice, but it will take further communication for my confidence to be restored. Meanwhile, Papaya is doing much better, thank you.