My 9-year-old adoptive daughter, Lauren, recently was diagnosed with Lyme disease, an illness usually caused by a tick bite. This week I write about the serendipitous events that led to the diagnosis, as we thought we were headed to the hospital to diagnose a ligament strain or something similar. Next week I’ll write more about Lyme disease itself.
It’s far more widespread than I’d realized. According to the Centers for Disease Control and Prevention (CDC), in 2014, more than 25,000 people in the United States were diagnosed with Lyme; another 8,000-plus probably had it. From 2001-2010, more than 6,000 10-year-old girls were among the more than 232,000 Americans diagnosed with the illness. For thorough information about Lyme, see the CDC’s Web site at http://www.cdc.gov/lyme/index.html.
And here, writing as a parent, I offer an unrestrained thank you to and endorsement of Dr. Algis Baliunas and all the staff of the Memorial Hospital of South Bend Emergency Care Center; Dr. James Flynn of South Bend Orthopaedics; and the pediatric hospitalists and residents as well as pediatric nurses and child-life specialists at Memorial Children’s Hospital.
We have a diagnosis: Lyme disease.
Yeah, I wasn’t headed to the diagnosis Lyme disease when I took my 9-year-old daughter, Lauren, to the ER to get her hip examined. She’d fallen, she told me, tripping over the trundle bed — or, more likely, some Barbie head or lethal Lego contraption that shouldn’t have been on the floor anyway — and her hip really hurt.
Now, children of ER nurses know if ain’t no blood nor bone in sight, mama don’t take you to no hospital. You walk it off. Well, Lauren was walking, but limping weirder and weirder, clearly compensating for hip pain that seemed to be getting worse, not better as expected, with time.
I examined her again two days after the fall. Still no bruising, swelling or obvious deformity, but something was not right. One leg was three inches longer than the other, and I was horrified to think I’d missed a glaring displacement or fracture.
One of my favorite doctors — favored because he’s smart, fast, thorough and compassionate — ordered an x-ray. Negative, nothing broken. While that was a “whew” moment, it was unsettling still. Something was wrong, and we remained uncertain.
Now, I’ve been to dozens of ultrasounds assessing babies in bellies — enough to know the very basics, like black is fluid. I saw it — the fluid pocket — right away when the staff put the transducer on Lauren’s hip. Egg-shaped ball of black. “Cyst?” I thought. “What IS that?”
Turns out it was synovial fluid, the “water” in your joints, only this was too much fluid. The extra fluid was either blood or fluid brought on by some kind of microorganism — ew, pus — in the joint space. If it was blood, there likely was a fracture not seen on x-ray. If there was ew, pus, then some sort of bug got in there somehow.
In short order I was signing consents I usually hand out to patients myself. Lauren would be sedated, and a doctor would be pulling the fluid from the joint with a big needle. It’s called “joint aspiration,” what people mean when they say they get the water taken off their knee, for example.
I choked up for a moment when I handed Lauren off to capable hands, realizing then it’s harder to be the patient’s parent than it is to be her nurse. I vowed to be a better nurse to my patients’ parents.
The doc showed me the fluid — thick, yellow ew, pus and a whole 5-mL syringe full of it to boot. Lauren, who had been premature, isn’t even 50 pounds. That much fluid in a joint? Wow. No blood, though, so no fracture. But clearly — infection.
“Weird,” I thought. “Now what?”
The joint would need some serious cleaning, the kind of scouring only surgery can accomplish. No way would you want to leave the little “bugs” in the joint space. So, late into the night, a beloved child-life specialist hauled Lauren to the operating room in a wagon. A kind and capable orthopedic doctor, who has restored my faith in “informed consent” by carefully explaining the how-to and every risk and benefit to his surgery, opened the joint, cleaned it out and sewed it back up.
The surgery took about an hour.
Lauren was admitted to the hospital and would receive high doses of antibiotics while we waited to find out, via a series of lab tests, what little bug had gotten in there.
The first test came back positive for Borrelia burgdorferi, a bacteria carried by infected deer ticks and transmitted to others via a bite. No official confirmation, however, until a more sensitive lab test could be performed, but we were on to something.
A couple days later, we took Lauren home awaiting results. I did not call the day I could have to hear the word. Looking back, I think I was too stressed to consider it, thankful just to have her home where I could tailor her care the way a nurse-mother does, hopeful the antibiotics she was taking would just kill whatever it was, and we could put this behind us.
But you must know what’s wrong to fix what’s wrong, and I eventually heard the confirmation from the second lab test. We have a diagnosis: Lyme disease.