Levi’s Story

Site created on September 9, 2016

On Thursday, Sept. 8, 2016, Levi was taken by helicopter to Arkansas Children's Hospital, where he was diagnosed with double pneumonia and Guillain Barre syndrome. He was admitted to the PICU and put on a ventilator. He was in the hospital for seven months. He is now at home and regularly receives OT, PT and speech therapy. His right side remains weak, but has improved. He is still on a ventilator at night. We are using this site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Melissa Varner

I haven't updated this site in years. I prefer quick and easy updates, and Facebook seems to work just fine for those. But since so much time has passed, I figured it was time for a longer post. 

Levi had a rough start to 2022. In December, just after finals, he got sicker than he had been in a long time. After 10 days of antibiotics combined with 5 days of steroids, he was still not back to his normal. Both his primary care doc and his pulmonologist were on vacation at that point because it was the week after Christmas. We had canceled our trip to see my family in Arizona.

Since his oxygen was still hovering low and we couldn't see his doc, we asked the on call pulmonologist to order an xray. We took him to Arkansas Children's Northwest. We got back home and got a call from the on-call doc telling us to take him to the ER. The pneumonia we had tried so hard to get rid of was not gone. They can't admit a child with a trach, so they told us they'd try to avoid having to fly us to Little Rock. Instead they gave him two shots of a strong antibiotic in his little legs and told us to bring him back for more the next two days. We did. Poor Levi was a tough little guy. His request late one night after a set of shots was bacon, so I drove through the McDonald's drive-thru at 10 p.m. to order bacon. He was thrilled. 

The shots did work, but Levi still took a long time to recover and we had to do extra breathing treatments. It was a difficult time. Then when school restarted, Levi got another cold. He seemed better after a couple days, and then as things usually go with Levi, he woke up with a high fever after the good day. We took him to the doc the next day, but he tested negative for covid and the flu. When we got him home from the doctor, he seemed so much better. It was like a switch was flipped. And suddenly, I was miserable. after coming home from the doc, I had to go straight to bed and I spiked a 102 fever. Gregory had done that the previous weekend, but seemed better. A few days later, I tested positive for COVID. I continued to have positive tests, and finally got released on Feb. 5. No one else in our family ever tested positive, despite Gregory and Levi both having symptoms similar to me and testing multiple times. I got a double ear infection, and I felt like it took forever to get my ears back to normal.

And here we are today (Feb. 15). I took Levi to the doc again after he had a fever all weekend. He seemed better yesterday, but his secretions out his trach became colored, which is usually an indication that all is not well. He has bronchitis, but we are hoping it will not turn into pneumonia. 

2021 was hard for our family, but Levi continued to make progress. He graduated after speech/feeding therapy and continues to need less formula through his gtube. He happily eats a variety of foods and textures. But we are thankful for the gtube, especially when it comes to hydration while he is sick. 

For the first time last fall, Levi participated in Miracle League Baseball in Northwest Arkansas. The organizers said it was a little different than usual because of COVID, but Levi loved it and loved to brag to everyone about how many home runs he had hit.

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