What I Fear When Driving my Child to the ER

The automatic door slides open. I push my daughter in her wheelchair into the building, sometimes tugging an oxygen tank behind us. The bright lights hit my tired eyes while my feet walk in a fast pace up to a counter. The staff in nursing uniforms greet me and take down my daughter's information.

I hate that I have to go to emergency rooms. Unfortunately, I have had to use them multiple times with my daughter over the years. Jaycee's combination of health problems have resulted in dozens hospital admissions for respiratory issues that have all began in emergency rooms (ER).

The biggest challenge with ERs is that the doctor doesn't know my daughter or my family personally. I have found that some doctors or staff assume that I am just some paranoid parent overreacting or that I'm at the ER for ulterior motives. Some doctors don't take the time to review my daughter's extensive history or listen to my concerns. When this occurs, my daughter doesn't get the care she desperately needs.

I have had some terrible experiences in the ER. Several years ago, Jaycee's breathing became labored while we were coming home from an outing. We stopped by a local ER on a Friday night to get her checked out and possibly get medications. We met with a doctor for a couple of minutes and an x-ray was completed. Nothing else was done. We sat there watching Jaycee's vitals on a monitor. Her heart rate was extremely high and her oxygen saturations were low. There was no breathing treatment given. No oxygen. Nothing. We sat in a small room inside a busy ER being ignored. Finally, a nurse showed up with discharge papers because Jaycee didn't have an appendicitis. Talk about confusing!

We demanded to speak to the doctor who never bothered to come talk to us again, but her shift was over. The doctor who took her place was just as confused as we were but looked at her vitals, listened to us, and called for a transport to a children's hospital. A helicopter came, oxygen was given, and Jaycee finally got the help she needed.

Even the ER at the children's hospital has gotten it wrong. A couple of years back, we took Jaycee to the ER late one night because she had a junky cough, and her oxygen saturation levels kept dropping at home. I will admit that Jaycee didn't look sick and that was part of the problem I am sure. When Jaycee quickly went through triage at the ER, her vitals were on the borderline of needing oxygen. At home, her numbers were bouncing around so staff had to watch it for more than 30 seconds to see the problem. We were escorted back to a treatment room and an x-ray was taken to investigate the cough. Jaycee was never given a breathing treatment. She was never placed on the monitor, which was highly unusual, given we had concerns about her breathing. Nothing happened! All the while, my husband and I grew anxious that Jaycee wasn't being helped!

A few hours after arriving, a doctor came into the room to discharge Jaycee. My husband and I were furious, and my husband said he wanted to talk to someone else. The next doctor entered to give us reasons why Jaycee was fine. We disagreed. He humored us and placed Jaycee on the monitor. It was then that he realized that Jaycee needed oxygen...and a breathing treatment...and ICU!

I can give you a half dozen stories that exemplify the worst of our ER experiences. I mean, let's not forget the local ER doctor who asked if my child with Down syndrome was a "mongoloid."

On the other hand, I can give you a half dozen stories in the ER that went extremely well. The last couple of ER trips have been near perfect. We were seen soon after arrival, the doctors listened to me, and Jaycee was promptly diagnosed and admitted for treatment. The nurses and doctors were all kind and tried to make Jaycee feel comfortable. These good experiences are how I wish it was every time I enter an ER.

The problem is I never know what I'm going to get. I don't know if I'm going to have to convince the doctor that my child is sick. I don't know if I'll need to take our own inhalers inside because they won't give her a breathing treatment. I don't know if I'll need to ask the doctor to put my child on a monitor or do basic tests. I don't know how the doctor will respond to me, my daughter, or my situation. All of the unknowns make me even more anxious in a situation that is already stressful.

On the drive to any ER, I get fearful and worry about my daughter's health as I try to get her medical care as soon as possible. I also worry about what will happen when we arrive. I never breathe a sigh of relief until the process has started at the ER and I can tell that Jaycee will get the treatment she needs. If not, I'll speak up and be her voice.

But, I'd rather someone take my voice seriously the first time.