Out on the Oregon Trail

Ever since Ellie was born, I have been paranoid about RSV. It is a respiratory virus that, for most kids and adults, presents as a cold. For babies, older people or people with compromised medical systems, it can be really bad. It can be so bad that the illness could even result in death.

For the first two years of her life, Ellie qualified for some immune boosting shots that helped protect her from RSV and other respiratory infections that could further compromise her already compromised lungs.

Ellie loves a photo filter.

The shots are about $7,000 each and our insurance company gets to decide whether or not the shot – that her pediatrician and cardiologist would prefer she get – is necessary. We were told that this year she has “aged out.”

Illnesses like RSV and hand, foot and mouth are running rampant in Arkansas this summer, and so I have been even more worried about her getting sick.

At the end of May it was a parainfluenza turned pneumonia that landed her in the hospital in Colorado Springs during our big western driving family adventure. When we started climbing in altitude, her lungs couldn’t take it and, once she was stable, we had to cut vacation short and turn around to drive out of the mountains.

After we all got over the respiratory virus, the stomach virus hit the house. Next was hand, foot and mouth irritating the kids and giving them all fevers over the same weekend. A little snotty nose here and cough there followed, but nothing to be too worried over.

Last week, though, Ellie just didn’t seem herself. We kept her home from school a couple of days, thinking that she just needed the rest. On Wednesday, she spiked a fever of 105 and her fingers and toes turned blue.

Blue extremities are pretty normal for Ellie. Her cardiologist says it will just be part of who she is from time to time throughout her life. But when I pulled up her shirt to look at her work of breathing, I could tell – even with my crash-course medical degree – she was struggling.

I called my husband at work. He was on a deadline with depositions that were scheduled for the next morning.

“Call the doctor,” he said. “See if we can get her in there this afternoon.”

Her pediatrician couldn’t see her but another doctor in the practice could. For either of my other two kids, this wouldn’t be an issue, but it just didn’t sit right with me for Ellie.

She’s complex and unless they are familiar with her history, its easy for medical professionals to overreact, looking towards the worst-case scenario, or to underreact, pulling from experience with typical kids who don’t have underlying conditions.

I didn’t think we had the time to play the game with a new doctor and thought it would be better to take her straight to her second home – the children’s hospital. They could do an x-ray right there and her cardiologist was upstairs.

When we got to the ER, the waiting room was empty except for a little boy, who shared my birthday, that had put a rock in his ear.

I thought, “This isn’t going to be so bad.” I had been worried that we would share the room with a bunch of people who were sick since all I had seen in the news was the spike in COVID cases in kids and respiratory viruses.

The nurse called us back and started asking questions. Ellie’s oxygen saturation was lower than it had been on our home pulse oximeter, meaning that she was likely just getting worse. The fever hadn’t broken any with the ibuprofen or Tylenol I had given her at home. She was red and clammy and was whimpering as she tried to breathe.

The nurse listened through her stethoscope and hit the call button to the back.

At the ER. She wanted every sticker on her shirt.

“Is room 5 clean? I have a suspected sepsis here and we need to get back now,” she said as she grabbed Ellie’s backpack out of the chair and told me to follow her.

I held Ellie as she wrapped her arms and legs tighter around me. She doesn’t need to be reminded where we are and its scary when everyone is moving around so fast. There were sick people everywhere. Every room was full and every nook and cranny in the hallway held a child who needed some sort of medical attention.

After running some tests and giving her some medicine, they decided it wasn’t sepsis, but was that RSV I had been fearing. Her lungs looked good and didn’t appear to have any pneumonia. But, she was very sick, and honestly, I had seen her hospitalized for less.

The doctor came in and talked to me about how she was doing and what our circumstances were like at home. She wanted to know how far we lived from the hospital.

We have home oxygen and know how to use it. We can monitor her vitals at home. We have a good sense of when Ellie is in distress. They wanted us to try to handle it from home, she explained.

They didn’t turn us away, but they turned us away.

“If the fever stays over 105 for more than 5 days or if she doesn’t have any wet diapers in an 8-hour period,” is what I told my husband that the nurse told me would constitute a return visit to the ER.  

“Well, that’s kind of a low bar,” he said.

“There are a lot of kids in the hospital, and they are understaffed. They think she will fare better at home. It will be less likely for her to catch something else if she is home, and she will be more comfortable,” I told him, just repeating what I had been told.

She has been sick for a week now. She hasn’t hit any of the milestones that the nurse told me, so we haven’t taken her back to the hospital. Every day does show some improvement. She is now on home oxygen and we are monitoring her the best way we know how.

I do believe that she is going to be fine and that we are doing a good job, but I can’t help but feel a little like we are alone out on the Oregon Trail. I bet the staff at the hospital feels like that a little bit too.

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