Enterovirus D68: How Mother’s Intuition (and Medical Doctors) Saved My Son’s Life.

As parents gear up to send their kids back to school, I find it important to share this story. The absolute scariest time of my life (and there have been a lot of scary times).

I remember it like it was yesterday. Tuesday, September 2, 2014. My son, Caleb, was completely healthy. He was a very busy 3 year-old. We had gone to the park with his friend: they were laughing, climbing, and playing.

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Caleb had only been to the doctor, aside from his routine check-ups, 1x and it was for eczema when he was 14 weeks old. He has always been very independent. At 12 weeks old, he started sleeping through the night. He didn’t like to sleep near us. He liked HIS room, HIS bed, and HE chose his bedtime of 7:00pm.

On Wednesday, September 3, 2014, Caleb started his first day of preschool. He was very excited! However, when he got home from school, at 2pm, he had a cough. I didn’t think much about it at first because he was still acting like himself. Then he just kept getting worse. By the time his dad got home, around 6:30pm he was ready for bed, so we put him in our bed to be near him, and he was okay with that. At first, we thought he might have bronchitis. We decided I would take him in first thing in the morning if he wasn’t feeling any better.

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I LISTED TO MY MOTHER’S INTUITION

I kept a close eye on him. As I lay with him, I started googling his symptoms. I was reading through pages and pages of articles, and I came upon this small news article from Kansas City, on the 3rd page of results, talking about something called Enterovirus D68. I believed Caleb was showing similar symptoms: coughing a lot then later a wheezing sound started. Caleb has what is called Pectus Excavatum, and his chest normally dips really far in, but I was noticing his chest pull in deeper. At 11pm, I called ask a nurse through our insurance because I was starting to feel uneasy, and my mom gut was telling me this was serious. On the phone with the nurse, she had me count his breaths. She told me I should call the On Call Doctor at our Clinic, and if the doctor didn’t return our call within 4 hours to call her back. I DID NOT LIKE THIS ANSWER.

I called the On Call Doctor and left a message. I then decided to call Amplatz Children’s Hospital (now named University of Minnesota Masonic Children’s Hospital) because I believed I needed to go to the Emergency Room.  I wanted to make sure I wasn’t overreacting before I took him in. I told the nurse the Insurance Ask-a-Nurse had me count his breaths, he was at 61 breaths per minute. The nurse calmly told me, “ma’am, I don’t want you to freak out, but you need to hang up the phone and dial 911. Your child’s breaths are double the maximum they should be for a resting heart rate.”

My son was awake and I told him we were going to the hospital. He agreed to go but only if I allowed him to get dressed and not wear his pajamas. I decided to drive him since we were close to the hospital, and it was late so there would be no traffic. My husband called the hospital to tell them we were coming in. I pulled up and my son wanted to walk in, not be carried. At this point, I thought maybe he was having an asthma attack (my husband and his sister are both asthmatic). I thought we’d get a nebulizer and go home.

WE WERE GETTING TRANSFERRED TO THE PICU

They brought us into a room and started getting all of his stats. They immediately hooked him up to a nebulizer. The nurses told me how good it was that I trusted my gut and didn’t listen to the Insurance Ask-a-Nurse. I was told he would’ve been dead if we had waited 4 hours. I mentioned how I read this article on Enterovirus D68 from Kansas City. They had no idea what I was talking about and I think brushed it off due to me being another mom playing Dr. WebMD. THEN…. At 3am… the nurses came in and told me, “WE ARE MOVING YOU TO THE ICU.” I was not prepared for this. I thought after his series of nebulizers we would go home. My husband was at home with our 1 year old daughter. I thought we’d be home before my husband would go to work in the morning. I left my husband a voicemail and texted him telling him we were being transferred to the pediatric intensive care unit.

I called my dad, a nurse who at the time worked overnights. He started asking me what all of Caleb’s numbers were. I remember him asking what the blood oxygen level was. The nurse told me 76 (I now know how to check all of these numbers). My dad told me if it got any lower to call him and he’d be on a plane. At that point, I didn’t know you want a blood oxygen level of 97-100% saturation, and anything below 90% is considered low. I texted my sisters and my in-laws; I called my mom, she had the stomach flu. My mother-in-law sent me a text, “I can be there in 8 hours, do you want me to come?” I took a deep breath, started to cry, and responded that we needed her there. She told my husband and me that she’d leave immediately. She had 500 mile drive ahead of her.  My sister, her sister-in-law, and my son’s godfather took shifts watching our daughter that day so my husband could be at the hospital with Caleb and me.

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DOCTORS IN HAZMAT SUITS

Doctors and nurses entered our room in the pediatric intensive care unit in hazmat suits. NO ONE knew what Caleb had, but he was very sick. He was hooked up to so many cords. I mentioned a few other times to the doctors about the Enterovirus D68. Again, they disregarded my Dr. Google status. Caleb’s blood work came back. Negative for everything, but he tested positive for rhinovirus, the common cold. THAT’S IT! My 3 year old was on 8L of oxygen due to the common cold.

 

For 36 hours, Caleb was on 8L of oxygen. As he started showing progress, they started to lower the oxygen. I posted on Facebook how Caleb had been sick. I started getting tons of private messages about Enterovirus D68 because it had hit mainstream news, the same thing I had been telling the doctors about the entire time, including the Pulmonologist who saw Caleb in the PICU. Caleb was eventually transferred to a regular hospital room and off of oxygen. Saturday, September 6, we were discharged from the hospital. I don’t think I’ve ever been so relieved in my life. When we left the hospital, Enterovirus D68 was the number 1 article on CNN. At least 4 children died of Enterovirus D68, more than Ebola… the disease most of the country was freaking out about.  On September 9, 2014, I had a message from Caleb’s pediatrician (she had also personally called me while we were in the PICU). In the message she quoted the pulmonologist saying, “I don’t think we are currently checking for Enterovirus D68, but I wonder if we might start.”

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HE DID HAVE ENTEROVIRUS D68

2 months after Caleb was in the hospital, I was at the doctor with my daughter for pink eye. Their pediatrician told me the doctors had decided to recheck Caleb’s blood work and it was INDEED Enterovirus D68. Apparently Rhinovirus and Enterovirus D68 looked similar under the microscope. Caleb was apparently one of the first cases (if not the first case) of Enterovirus D68 in Minnesota, and that is why no one knew what it was. Since Caleb was so sick at the hospital, they diagnosed him with asthma. We proceeded to meet with the pulmonologist, we saw in the PICU, for over a year. We also had him see an asthma/allergy specialist. His allergy panel came back with him having MANY environmental allergies. It was determined by his allergist/pulmonologist/pediatrician he had experienced the perfect trifecta… Ragweed season + asthma + Enterovirus D68 = PICU.

My son is now in 2nd grade. He has allergy and viral induced cough variant asthma. He takes daily allergy medication. We carry a rescue inhaler and spacer with us. We have a nebulizer and prescribed meds to help keep him out of the hospital. So far, he hasn’t had another hospital stay and we hope to keep it that way.

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I will leave you with this: MOM GUT IS REAL. Trust your instincts!

Making Memories: How Entering a Facebook Contest Allowed for My Daughter to See Her Favorite Band.

Do you ever wonder if anyone ever wins the contests on Facebook? I tend to like, follow, share because I love the thrill of entering contests, and I believe if I win it is meant to be. One contest I recently entered was by a local event promoter, Carrie the Moment Sales + Events. The contest was to say something funny or cute that your child says wrong, for a chance to win 2 Okee Dokee Brothers tickets at the Minnesota Zoo. My daughter had recently danced to “Roll on River” by the Okee Dokee Brothers at her Pre-k graduation and really enjoyed their music. I knew immediately I had to enter my favorite thing my daughter says, “cheek butts instead of butt cheeks.” SHE WON!!!! We were so excited!

Carrie was so great to work with, and she was very quick to mail me the tickets. It was going to be such a treat for my daughter and me to have a mother/daughter date night. As we pulled up to the parking lot, my 5 year old daughter exclaims to me, “Mama, I’m so nervous, this is my first concert; I don’t know what to expect!” As we made our way through the gates of the zoo to the amphitheater, there were princesses and face paint. We wanted to get to our seats, so we only had time to meet the princesses, but she was in heaven. My daughter told me, “I know those are just people dressed up as princesses, but that was AMAZING.”

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We took our seats just in time for the Grammy Award Winning, Okee Dokee Brothers to take the stage. The show was amazing. The songs are super fun for both adults and kids. The band was extremely interactive with the crowd, and with the lack of breakdowns by the children (or adults) in attendance you would have had no idea the concert was taking place during most of these children’s bedtimes. I promised my daughter a CD at the end of the show, and she b-lined it to the merch table after her favorite song, “Roll on River” was played during the encore. After we got her CD, she wanted to wait in line to get it signed. As we walked to the car, my daughter was on cloud nine. She clenched her new, signed CD, bouncing up and down to the car proclaiming, “I’m so excited! I’m so excited!”

Everything about the night was so fun. It was also very bittersweet because I drop my daughter off at Kindergarten, next week, so it was extra special to have this time with her. I am so glad I entered the contest because I will forever have the memories of the entire experience. So, if you also wonder if anyone ever really wins those contests, THEY DO! It could be you next. I absolutely recommend following Carrie the Moment Sales + Events on Facebook. She always has tons of discounts for fun events to do with your kids, and often she is having giveaways, just like we won. I also absolutely say to check out the Okee Dokee Brothers, especially if you have kids or grand-kids. My daughter has already listened to the CD and watched the DVD, which came with her CD, and she wants to get the rest of the CDs. She has also asked if we could go to another one of their concerts. In addition, Music in the Zoo at the Minnesota Zoo was amazing. There is seriously not a bad seat, and it is a very intimate concert setting.

Remember to Like, Share, Comment when you see a contest and YOU could be the next winner!

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