Kahner Stewart – Living with Cystic Fibrosis

NORTH BEND – It’s been over one year now that our Kahner David was admitted to Geisinger Medical Center for an enlarged abdomen and no stool passed in the first 24 hours of life, cause unknown. On October 5th, just two days after birth, Kahner underwent his first surgery to explore the cause of his signs and symptoms. The surgeon would find a volvulus, Kahner’s intestines had made a knot in his stomach. Because of this volvulus, 20 centimeters of his small intestines were removed where the knot had been and a jejunostomy was made (both ends of the cut out part of his stomach were put on the surface of his skin in order for his intestines to heal). This is how he lived for 4 weeks. As a parent, this is your worst nightmare. I can only imagine what Kyle (Kahner’s father) was thinking. But as a nurse, I saw this as a step in the right direction. I was happy even, because I knew that all of this had needed to be done and now that it was over, I could breathe. Little did I know that this was only one part of our story.

There was a cause for all of this, a medical reasoning for what had happened to Kahner. At first, the doctors had thought Kahner had Hirschsprung disease, but after several biopsies were negative, that was crossed off the list. Then a call came from Kahner’s pediatrician’s office that said Kahner’s newborn screening blood work showed that he was a carrier of the Cystic Fibrosis gene. A carrier? No big deal, I thought. No one in either of our families has Cystic Fibrosis, and I know that that is hereditary! Initially, I felt another sigh of relief. I was convinced that this was all just some horrible coincidence, but the doctors didn’t seem so sure. I started to question myself as to why this would have happened. There had to be a reason, right? On October 25th, 2012, Kahner was given a sweat test to rule out Cystic Fibrosis.

I found my little guy’s arms wrapped in heat packs trying to make him sweat. We were told that babies don’t usually sweat, so it was a long shot. I had this horrible gut feeling that day. I asked the doctor when we would find out the results of the test (thinking he would say “In a couple of weeks.”) only for him to reply, “In about an hour.” I sank in my seat. I’ll never forget that day, October 25th 2012, when doctors, nurses, and a social worker came to Kahner’s bedside where I was holding him to tell me the news. “Kahner’s test came back positive for Cystic Fibrosis.” All I could think of in that moment was “I want to die, I can’t live to go through this.” Kyle was so strong that day, and I’ll always remember him calming me down, rubbing my back, telling me that “It’s going to be okay.” It would take weeks for both of us to take all of this in.

This isn’t your everyday new parent information, this is life long care information for our child with a chronic disease. I would be lying if I said that I took all of it well. It was a hard two months, and at times it’s still hard. It’s hard enough having a baby, let alone one that needs as much care as Kahner.

It’s a daily routine now that consists of a breathing treatment twice daily with chest physiotherapy (beating Kahner’s chest and back to help break up the mucus build up), multivitamins, enzymes with each meal to help break down the food he eats, extra salt in his bottles due to the extra salt that he sweats out, and medicine twice daily for indigestion. And with all that being said, Kyle and I wouldn’t trade our little guy in for the world! Kahner is alive today, he’s living! I was told that there was a possibility that Kahner would not make it through his first surgery over one year ago, but he did! He’s here with us today, and we’d do anything if it meant keeping him here with us.

On November 6th, 2012 Kahner had his second surgery to reconnect his bowel. The surgery went well and 3 days later Kahner would have his first bowel movement! Kahner will get sick just like any other child. For him though, it will take longer for him to get better. Kahner has been a very healthy and happy little boy, like any other 12 month old.

He is walking, almost running, bumping into things and is very curious! He has 9 teeth currently and can say momma, dada, bad, ruff, truck, duck, buck, and hot! He loves to play peek-a-boo and “I’m gonna get ya!” He points, claps, and waves bye-bye. He loves to eat peaches, bananas, and mashed potatoes and drink smoothies. We love everything about him and think that every day with him is a blessing! He’s our little miracle baby that God gave us for a reason.

Thank you to all who care for Kahner and have prayed for him along his journey! We are thankful to our families for the love and support through all of this and for the unconditional love they all have for Kahner” If you’d like to find out more about Cystic Fibrosis or if you would like to know how you can help the cause, please go to www.cff.org.

Also join Kahner’s Krew in Lock Haven, PA for the first annual Great Strides walk on May 3rd, 2014! More information on the walk can also be seen on the foundation website.