I’ve had a lot of people ask about Kylan’s health and how he’s been doing since his hospitalization last year. I’m happy to report that we haven’t had to go back to administering IV medication at home nor have we had to get another picc line since his was removed in December.

As you can probably imagine, we had complications with his insurance throughout his entire illness. The only hospital that actually took his symptoms seriously was a children’s hospital 40 miles away. They didn’t accept our insurance and the doctors that cared for him while he was hospitalized (the infectious disease doctor and the orthopedic surgeon) didn’t accept it either. However, following his hospitalization, due to the severity of his illness, both physicians had every visit waived for us and we were only responsible for copays at each appointment.

Every time we were scheduled for an MRI, someone from the hospital admissions department would call and tell us they had to cancel our appointment because insurance wouldn’t cover the costs. I remember two times in particular that I sat at work crying because I was so frustrated. I even offered to pay out of pocket because I would have done whatever needed to be done for Kylan’s health. Before every scheduled MRI, we would have to call his insurance company and the infectious disease doctor to have him preauthorize the appointment. However, things weren’t that simple for our May 22 appointment.

When the hospital called regarding the appointment, they kept insisting that the procedure couldn’t take place. When we heard from the office of the ID doctor, they mentioned that Kylan’s insurance would not cover another MRI, but that it would cover an xray. From what we were told, if the xray showed any possibility of infection, they would be obligated to cover the MRI.

On May 22, in the midst of the COVID-19 pandemic, I took Kylan to his appointment at the hospital. We were anxious to get the results because he had only been taking by mouth antibiotics since his picc line was removed. I kept thinking, “If these antibiotics haven’t worked, we will have to go back to IV medication and have another picc line. If the infection is still as aggressive as it was, will he be hospitalized again? Will the xray results be as in depth as an MRI? What if the xray misses something like it did when he was first hospitalized? What will our next steps be if the infection hasn’t regressed at all?”

That same day around 1 o’clock, the infectious disease doctor’s office called my husband with the results of the xray. They said everything appeared to be normal and that they were canceling Kylan’s appointment for the following week. After a long ten months, we were released from their care. Reliving that moment has brought tears to my eyes because as a mama, when your baby goes through something as scary as this, you can’t help but to feel so incredibly grateful for each day you have with them.

Since he had his picc line removed in December, Kylan was fortunate enough to play basketball last season and to live a normal life. He went to school each day, spent the night with friends, and he currently goes walking with his best friend and his family 4 to 5 nights a week. He runs all over the yard with our puppies and we’re taking a family hike this week. Until you’ve heard doctors say that it’s miraculous that your child is doing those things, it might be easy to take each step they take for granted. But me? Not a day goes by that I don’t think about the struggles Kylan faced. He couldn’t stand up, he couldn’t walk, he couldn’t even roll over in the bed on his own. As an 11 year old boy, the last thing you want is for your parents to take you to the bathroom, to shower you, and to dress you. We had to plan an extra 45 minutes before any of his follow up appointments because it took him 30 minutes to walk to the car and it took two people to help him down into the front seat. Those are things that I will never take for granted again.

As we approach the one year anniversary of Kylan’s illness this week, I just want to say THANK YOU to those of you who prayed fiercely for our boy and his recovery. I wasn’t sure if his life would ever be the same, but God has moved mountains for our family. Thank you to the children’s hospital and the incredible nurses and doctors that took the absolute best care of our boy during his hospital stay. A BIG thank you to Dr. Mac and Dr. Green, our family will never forget how great you were during some of the hardest days of our lives. If we didn’t have doctors as amazing as you, I’m not sure that we would be where we are today. Most importantly, a big thank you to the God we serve for hearing our prayers, guiding the doctors in their decisions, and opening our eyes to the things that matter most on this earth. And to my sweet boy Kylan, you are a warrior. You are so strong and everything that I wish I could be. What you had to go through physically and emotionally, others cannot fathom. Watching you lay in the hospital bed literally clinging to life as the team of doctors told us that you weren’t getting any better and that your kidneys and liver were failing was a gut wrenching feeling that I can’t put into words. You make my days brighter and my heart happier than it’s ever been before. I will cherish every day that I have with you, whether we’re sitting on the patio eating chips and dip or sneaking out for a coke float. You inspire me and I am so blessed to be your mom.