I didn’t even want to look at her. Less than two weeks ago, we received shocking news that it seemed her PLE was gone. Or at least at bay for a long, bright foreseeable future. Decades even without those three ugly letters echoing haunting in our heads.
Wednesday morning that healthful future changed.
January 4, she visited her cardiologist for a checkup. While we waited patiently in the clinic room, we watched cement trucks out the window pouring ground for more floors of a new medical care center. We remembered that view from years back, when that very spot was Potbelly’s sandwich shop. We’d walk across for sandwiches and a little sunlight during our month-long stay while Annie lay sick in her ICU bed.
Audrey’s routine order was day-old bread. What she didn’t eat, she tore into crumbs to draw a hungry pigeon crowd. She called them chickens.
I remember those lunches I chewed numbly, trying to silence the morning rounds report in my mind: “She’s not getting better. We’re still trying. But we’re not really sure.” I leaned in and put my cheek next to Annie’s almost 5-year-old cheek, hugging her from behind as she window watched all the street walkers. I’m so thankful they kept trying.
A knock at the door interrupted my reminiscing. Annie’s kind doctor entered with a smile. Annie matched puzzle shapes and worked a sticker book to distract herself from his care.
It had been an entire year and four days to be exact since Annie was discharged from CHOP for her PLE diagnosis and treatment in January 2018. On every one of those 369 days, her body was asymptomatic of its new disease. Her blood maintained normal Albumin levels all on its own. Her sweet face stayed slim with cheeks pulled tight. Her once round, fluid-filled belly stayed trim. Her weight remained stable.
She’s happy. She loves preschool. She’s learning to read. She never wins the races down sidewalks with her friends, but she tries. We kept reporting these details to each other. I finally asked the obvious question.
“Does she still have PLE?”
“She had PLE,” her doctor replied cautiously. “I don’t see anything in her body right now that would say she actively has it today. We’ve been collectively waiting for Annie to fail, but trying to give her time not to. I think at this point we can change our mindset to watching her thrive, with cautious realism anchored in a lot of hope and support in the back of our minds.”
We continued in talking about medication changes of options that will be ready in about a decade. Our previous conversations had the same time frame, but had sounded differently. “We’d likely only be able to manage the PLE, at most, for about a decade.” The prognosis was changing.
Could it be true? We all wanted it to be. And it seemed symptomatically viable. We all four split a chocolate dessert that night in celebration. We felt like we could breathe again.
Until last Wednesday.
Annie stumbled to the breakfast table, complaining about the crust in her eyes. She was diagnosed with pink eye the day before. “Momma, I need my drops!” she mumbled. I turned to look at her. What I saw took everything in me to hide my shock and give her a smile.
Her right eye was almost swollen shut. Her right cheek puffed out round. Her lips were full and plump.
A delicate, difficult art of being a mother like this is smiling and nodding into your child’s eyes when you feel like gasping and crying instead. I pulled her close so I wouldn’t have to look anymore and whispered that I’d get the drops. I wished with everything in me that a swollen face was a pink eye symptom. Even WebMD knows it’s not, but I put some hope in administering those antibiotic eye drops anyway.
I also snapped a picture and emailed her cardiologist. He was equally disheartened and “concerned but not alarmed.” He is hoping–we’re all hoping–that it is just associated with the cold virus plus pink eye. That her body is just responding to a sickness in a way that is within normal range for someone with her heart physiology.
Then he ordered her back on diuretics that she just came off of, plus doubled the dose. I wonder if a delicate, difficult art of being a doctor like this is affirming, nodding, and gently prescribing when a scared mother calls you crying. Thankfully both of Annie’s cardiologists have this down.
Her doctor wrote an official note to ground my weekend plans and has checked in with me throughout the last several days. Annie has seemed like her normal self some. The eye drops cleared her eye infection. The oils cleared her viral infection. She’s still tired though.
Today I have the honor and responsibility of driving her to Labquest, holding her down, wiping her tears, shhhhshing her cries, and watching a vile fill with her blood. All the while I’ll be praying that vile is FULL of Albumin. That her body is still somehow able to sustain a normal level, even though she woke up with mildly puffy eyelids this morning.
Right now we are considering three theories of Annie’s recent swelling.
1- Her cold virus just made her body respond that way for a short time. And once she’s completely over it, her body will go back to slim, trim, PLE-less Annie.
2- We miscommunicated about a medicine for her to stop. One that doctors theorize helps manage the body’s inflammatory response to PLE. So she had been off of that for 2 weeks, but restarted it yesterday. What if that was it?
3- She still has PLE. More than that, her body is right now (mildly) sick from the disease. No one wants to say it out loud, so I’ll type it instead. We kind of all think this theory is the most reasonable right now. Could it be true?
But the Albumin levels in her blood test results will tell the truth that no one wants to hear.