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.

How My Body Responds to My Daughter's Illnesses

I don't know what it's like to have a surgery. I'm never had one myself.

I don't know what it's like to be a small child in the hospital for an illness. I was a senior in high school the first (and only) time I was in the hospital for an illness.

I certainly don't know what it's like to be taken to the emergency room in the middle of the night due to respiratory distress. That's never happened to me.

I don't know how any of these things feel for my daughter, who has experienced them all many times, but I DO know what it's like for the helpless parent in this scenario.

Whatever I have experienced in a health crisis is nothing compared to my daughter. I want to make that clear. I can't imagine what her post-hospital thoughts and problems are. With her limited verbal skills, I can only glean from the behaviors she displays later on.

As my daughter's caregiver though, I have had my own set of problems that stem from caring for a child with chronic health problems. I have been reluctant to share them because I don't want to seem like I'm trying to make her experiences about me. But, this is the side of the story I personally know. My body and mind have been changed forever from Jaycee's surgeries, emergency respiratory crises, and over 30 hospital admissions. Here's some things I have experienced from my daughter's health issues:


Hearing Beeps and Alarms
When Jaycee left the NICU after a 10 day stay, I came home "hearing" the beeps, dings, and alarms that I had been listening to nonstop at the hospital. There were no monitors at home, so there was absolutely nothing making these sounds. My brain got accustomed to the constant noises in the NICU and had to adjust back to silence. I thought it was such an odd phenomenon of hearing things that weren't real that first time, but it's happen several times to me after subsequent hospital stays with Jaycee. Now, I know that I may come home hearing beeps and alarms that aren't there, but they will leave in a day or two.

My Son Talking to Jaycee while she's in ICU on Day Time Bi-Pap Use

Nightmares
After an unplanned hospital stay, it is not uncommon for me to have nightmares about the hospital once we get home. Generally, the scarier the hospital stay the more intense the nightmares are and the longer I tend to have them. After a few days in the hospital for a less severe respiratory issue, I might have a nightmare or two within a week of being home. My nightmares aren't about serial killers or monsters. They are usually intense dreams about some aspect of the hospital.

After a few of Jaycee's very intense ICU stays that required a ventilator, I have had nightmares on and off for months. Most of them were hospital scene based. Many of them involved Jaycee being in the hospital struggling to breathe while I was lost in the hallways, trying to find her room. (If you are a dream analyst, feel free to message the meaning of that dream to me.) Sometimes, I have woken up from these dreams with a racing heart and fast breathing. Sometimes, I wake up confused about where I'm at, especially if we have just gotten home from the hospital. I have to remind myself that she and I are both safe at home.

I learned too that watching movies or television shows that are hospital based can trigger nightmares. For awhile, I was watching reruns of the sitcom "Scrubs" before bed. I started having nightmares again out of the blue. Even though nothing scary was happening in the comedic show, something about seeing the hospital scenes depicted triggered something in my brain.

Muscle Aches and Tightness
This is the most frequent and long term issue I have. The muscles in my arms, neck, and shoulders get unbelievably tight. At first, I blamed the tightness on the lifting and moving I did with Jaycee during an admission. It took me months and months (maybe a year) to realize my tight muscles were a result of the stress of caring for someone in the hospital so much. My muscles became so tight that I physically could not make them relax. I tried a technique called progressive relaxation where you tighten and relax your muscles in a certain sequence to get your whole body in a state of relaxation. I literally could not relax certain muscles no matter how focused I was.

The tightness eventually led to my left hand going numb, and that's when I started to understand I had a real problem. I lived on nightly Bio Freeze or Icy Hot applications. For a time in my life, I made weekly massage therapy appointments. These were not luxurious appointments, these were a necessity. Every therapist commented on my knots and the extreme tightness of my muscles. All of them asked me if I had stress in my life. One described massaging my neck and shoulders as pressing against a hard rock. I finally got to a place where my muscles could relax. I won't say I'm a 100% better, but I can recognize the tightness quicker now and try to take a more proactive approach.

Teeth Grinding
At one dental appointment, I was asked if I was aware of my nighttime tooth grinding. I wasn't. The dentist showed me the places on my mouth which indicated some serious grinding. After he made me aware, I did catch myself sometimes grinding when I was just starting to wake up. I ended up getting a night guard made from my dentist, because clearly I had a problem. I'm not sure when it started, but I can tell you the grinding gets worse with the stress I feel during illnesses with Jaycee.

The night guard has helped, but I don't always remember to pack it when an emergent illness arises. There have been times in the hospital that I have woken up in pain from intense grinding and jaw clenching. This is a problem for Jaycee too. When we drive to the hospital, sit in the emergency room, or wait for a doctor, she will grind her teeth SO LOUDLY!! She does this during the day while awake, but my problem happens at night when I can't control it.



There you go. Now, you know how my body has responded to my child's chronic health issues. I often wonder if she hears beeps and alarms that aren't there. I wonder if she is having nightmares about the hospital we just left. I wonder if she gets aches and pains from tight muscles after being stressed in the hospital. If I am a by-stander in this story, I wonder what all is happening to her. Perhaps, one day she'll be able to verbalize it to me. Until then, we'll just continue on and hope that the next illness is a long way off.

Keeping My Sanity

When you have a child with complex medical or developmental needs, there are many, many more responsibilities for the mom. Over the years, there are things I have done to help maintain some order to the tasks and information that can seem overwhelming. Here's some things that help me:

1. An appointment book: This is the most obvious on my list. If your child has several appointments, a calendar or appointment book is a must. Don't waste brain space on days and times. Leave it to the book or electronic device.

2. A written health history: A few years ago, I decided I could no longer remember all of Jaycee's diagnoses, surgeries, and previous admission information. When we took Jaycee to the emergency room, it's hard to answer easy questions when you are under stress and no sleep. I would forget to tell the doctor she had Down syndrome and then they would gently ask me if she had a genetic condition. Whoops! Well, I remembered the asthma, obstructive sleep apnea, AV canal heart repair, and Wolff-Parkinson-White syndrome.

Jaycee is typically in the hospital for lung issues, so common questions are: when was your last admissions, how many times has she been in the ICU for breathing problems, and when was the last time she was in the hospital? When she was in the hospital once or twice, these were easy. Then it became hard. That's when I wrote up the health history that contains her diagnosis list, surgery list, and hospital admission date/diagnosis/and if she went to the ICU. I keep this saved on my computer and update it as needed. I keep a copy of it in my purse, so I always have it with me.

I have to admit that the first time I used this health history at the emergency room I felt strange. I didn't want to see compulsive. But the doctor remarked that other moms do this and the doctors like have an easy medical history to quickly read through.

3. A written medication list: When at appointments or filling out papers, I pull out Jaycee's written medicine list so I don't have to rely on my memory. When there were just 3 or 4 medicines, it was easier. But now, 9 medications when healthy and a few more when she's sick is just too many for me to remember. So, it's all on a nice chart that I carry in my purse.

4. Assigning tasks for a certain day: There are many extra tasks I have as Jaycee's caregiver, so I try to do certain things the same day of the week in order to help me remember. I clean Jaycee's foot braces on Friday afternoons. I clean her bi-pap parts, nebulizer masks, and aero chambers on Friday mornings. I check all of Jaycee's medications and get refills on Fridays. (Can you tell I'm off work on Friday?) I make sure Jaycee has her bath with bleach water, which kills the staph infection on her skin, on Monday or Tuesday night. I check her night diaper count on Thursdays. Anyway, you get the idea.

5. Keep a folder with records: I have a small folder I keep important medical reports and information in. At first, I kept everything. Now, I pretty much know if I really need something or not. My folder is pretty thin because I go through it regularly. There is the current school IEP, hearing tests, and the genetics yearly report in this folder. By keeping this information all together, I can access it easily.

6. File System for Medical Receipts: For tax purposes, I keep all medical related receipts. I started using a file folder system to make it easier at the end of the year when I add it all up. I put receipts into the categories: hospital related expenses, doctor/dentist co-pays, medications, medical equipment, hotel expenses, etc.

7. A Medicine Schedule/System: When Jaycee was younger, I had a book that I wrote down the times to give Jaycee medicine because she got several different medicines at 4 different times a day. The book helped me remember because I was suffering from sleep deprivation.

Currently, I give Jaycee medications only twice a day, so I don't need to keep a written log. However, I do lay out all of the medications in a different spot before I start administering. By placing them in a different spot than where I store them, I can clearly see what is done and what needs to be done. Sometimes, you can't remember because it all blurs together, so this is how I keep it straight.

Whenever Jaycee is sick the medication times change and there are more medications to give, so I write the dosage schedule out to keep on track. Sometimes I use the dry-erase board. Sometimes, I use the paper. If we have to run out to the emergency room or go to the doctor, I take a photo of the dry-erase board or grab the paper so I will have all of the information with me.

8. Documenting Illnesses: Remember that appointment book? I document in it the day Jaycee started needed extra breathing treatments, the day she saw a doctor about a respiratory illness, and the day she started a steroid course or antibiotics course. Why? Jaycee sees several specialists who I regularly see for check ups who want this information. If she has back-to-back illnesses, I can clearly see when she was last on steroids or antibiotics.  So it might read: May 10: Local Dr, Steroids 5 days  

9. A Packing List: When Jaycee was younger, I wrote out a list of supplies I needed for travel with her and made several copies of it. I was so paranoid that I would forget her medicine or syringes or bed pads that the list helped decrease my anxiety about forgetting something. I no longer need that "master list" but I used it for several years.

There you have it-- some of the things I do to keep some order in this busy life.

A Photo of our board before an ER dash. Xopenex, Tylenol, and Motrin are some of the meds documented.

Signs Your Kid is Sick Often

Here are signs that your child may be sick often:

-You know what your child's vital signs are. You can rattle off their normal heart rate and oxygen saturation levels without hesitation.
-You notice every sneeze, cough, change in eating, or sleep disturbance that may indicate that there is a problem.
-There are containers in your vehicle in case of vomiting.
-There are other things like towels, spare clothes, or wipes in your car for illnesses.
-When traveling, things like thermometers and Tylenol are a must.
-You know the maximum dosage of medicines to give in case of emergencies.
-You can pack a bag for a hospital admission in less than 5 minutes.
-On call doctors or emergency room staff recognize you or remember you.
-You never plan anything too far ahead because you don't know if your child will be well enough to go. If you do plan something, there is a plan B for every trip or plan.
-Every time your child is sick, you hope and pray it passes quickly and they'll come out OK.