Not our first quarantine

Not our first quarantine

The phone rang. I answered even before the first ring was complete.

Mrs. Werne? You have a very sick little boy. Pack a bag right now and take him to Riley Hospital. Don’t stop for anything.

The date was Saturday, July 25, 2003. The little boy was James. He was only three years old.

Farm boy James

Friday evening, James wasn’t quite right. He threw up (doubly gross because Gary had brought him a blueberry slushy to drink). As I washed James off in the tub, his pee mixed with the running water, which quickly swirled down the drain.

I didn’t notice it was discolored.

As dramatic as this sounds, the fact that he didn’t flush the toilet the next morning may have saved his life.

I called the doctor and they said to bring him right in. Brown pee, they told me, needed immediate attention.

The discoloration could be caused by protein in the urine or blood in the urine. It was both. Not a good combination.

The doctor also noticed tiny bruises on James’s back – no bigger than the tip of a magic marker would make. Apparently, they offered an important clue.

We were sent to the local hospital for an ultrasound test. They sedated James and then took a look at his kidneys.

Afterwards, the technician gave me a hug. “I’ll pray for your son,” she whispered.

“Why? What did you see?!” I knew better than to ask. She couldn’t tell me. We were sent home to wait.

Over the long afternoon, James slept in my arms. When Gary took turns holding our youngest son, I searched WebMD, looking for answers. From descriptions of cancer to bruised kidneys, my anxiety level rose and fell.

And then the phone rang.

We quickly packed a bag and made plans to drive to Indianapolis. John, just 12 at the time, would come with us.

Right before we left, James reached out a little hand to his father. “It’ll be okay, Daddy.”

When you live on a dairy farm, you have a very short leash. Gary, stricken, stood in our driveway as his family drove away. I made a silent promise: Whatever it takes, Gary, I will not bring our son home in a casket.

Three hours later, near midnight, we arrived at the emergency room at Riley Hospital for Children in downtown Indianapolis.

Oh, this is the little boy with kidney failure.

We spent most of the night in the ER. Gary’s sister Sharon and her husband, Mike, joined us, and took John with them to overnight at a nearby hotel. I never let go of James’s hand, even as we both slept fitfully, he on an examination table and me in an easy chair that a kind nurse rolled into the room for me.

Just before dawn, they moved us upstairs to a room. Just in case James was contagious, they enveloped him in sleeping bag of sorts that completely covered him. Even his little face.

I wouldn’t let my brain tell my heart it looked like a body bag. We waited for an empty elevator. It felt like hours.

They settled us into a room. James didn’t have a roommate.

Until we figure this out, you’re under quarantine.

It was hours later, after I’d relayed our “story” to seemingly countless doctors and nurses, that I finally summoned up the courage to ask a nurse if there was a possibility we’d lose James.

Her face nearly melted with empathy as she realized the pain I’d endured not knowing the answer to that horrible question.

You got him here in time. Not everyone does. We’ll take good care of him.

Later, in the privacy of the bathroom, I clutched the cold tile wall and choked down sobs, begging God to save my child. And all the other children at Riley.

We were in isolation. Surrounded by masks, gowns, and gloves.

Quarantine.

In the coming days, I learned a lot about Hemolytic Uremic Syndrome, or H.U.S.

Remember the eColi problem that nearly closed down a west-coast hamburger chain a few decades ago? And the eColi that brought most petting zoos to a close? James had something akin to that.

We never found out what caused it, though, despite more than 600 tests to his blood. It wasn’t undercooked food, it wasn’t stagnant water, it wasn’t the cows at Daddy’s farm.

Two other children were at Riley with H.U.S. when we were there. They were both on dialysis; they were both younger than James.

Despite the “kidney failure” diagnosis, James’s kidneys kept working well enough that we didn’t have to put him on dialysis. At one point, 12 hours went by without him using the potty; our specialist, Dr. Leiser, told us we had two hours to go (literally) and then would need to consider more drastic measures.

There’s nothing like a deadline.

Within 20 minutes, James had produced a remarkable 22 ounces.

Yes, we had to measure it. And I don’t think anyone believed me that this little fellow could produce so much.

They didn’t know my stubborn little guy with the cast-iron bladder the way I did.

Meanwhile, the only treatment available for H.U.S. was “supportive,” meaning a blood transfusion. My hand shook as I signed the paperwork.

I asked the nurse, “Is there any alternative?” She slowly shook her head, no.

Big brother Thomas had just started an intense “Fast Track Calculus” summer program at Rose-Hulman. He took the time to drive over from Terre Haute to see his brother. Tom comforted me as the transfusion began.

In the middle of the night, the nurses came in to check on James and to draw more blood.

“Shhhh!” I heard him admonish them, “My mommy’s asleep.”

I found out later that H.U.S. patients tend to be very irritable.

Early one morning, when nurses were taking James’s blood pressure and drawing blood for the zillionth time, he’d had it. My mild-mannered child threw a good old-fashioned tantrum.

The nurses remained calm and tried to gently soothe him while continuing their work. One of them was particularly dear, “We’re almost done, pumpkin.”

James would have none of it.

The little redhead roared: I! Not! Punkin!

Dr. Leiser later praised that behavior, telling me it was the fighters who got better more quickly.

James in quarantine

After a week, James was finally interested in eating again. Daddy and John came to visit every other day, bringing “commasghetti” and hotdogs.

During those visits, I’d sneak off to do some laundry, just one floor up.

While standing in the elevator, it suddenly hit me. There’s no small talk in a children’s hospital. Worried parents merely nodded at each other, but there was nothing to say.

One evening I decided James needed a sponge bath and shampoo. I asked one of our favorite nurses, Big James, for help. He told me we could unhook Little James from the monitors for a while.

When he brought me the tub of supplies, Big James talked me through all the different types of soaps and shampoos he’d gathered up for us.

“I hope there’s something in here that will make it feel like home for James.”

Tears stung my eyes. Big James really cared. He wanted to comfort my sick little boy who was so far away from his own bathtub.

After a second blood transfusion, James’s numbers turned around. A third unit was canceled. The morning of the tenth day, we were told we were released from quarantine and could go home after lunch.

That morning as I packed, I counted five “Code Blue” calls echoing down the hallway. After each call, there was the sound of running footsteps and then silence.

James and I were going home.

How many families didn’t get that happy ending?

Out of quarantine, James is one happy kid!
A few weeks after we got home, James turned four and we got his portrait taken. Feeling fine now, he clowned around quite a bit. I didn’t care – I told the photographer that this was the exact photo I wanted of my happy, healthy son.

Since those harrowing yet incredible days, Gary and I have made Riley Hospital for Children our charity of choice. We know firsthand how wonderful the staff is — from the nurse who brought me a blanket and literally tucked me in as I cradled my sick boy that first night in the ER to the nurses who never showed any annoyance, to the doctors who took the time to explain H.U.S. to Gary and me until our overwrought brains could take it all in.

And how is James making it through the quarantine of 2020? He’s finishing up his final week of classes (another Rose-Hulman student) here at home. He’ll be embarrassed that I say this, but his lack of complaining has impressed us immensely. I guess as long as I don’t call him punkin, we’ll get through this okay.

James at Rose-Hulman
James would have preferred to finish out the school year on campus. Who could blame him?

Gary and I couldn’t be prouder of how our family has endured the stay-at-home order. Whether deemed essential or non-essential, we’ve all watched out for each other (John and Aubrie even got married!), and look forward to the time when we can all be together again.

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