Will’s smile can melt your heart and brighten you day. He played flag football for the first time last fall and is SO excited that he is old enough to play tackle football this fall. When I told him I signed him up for football, he asked, “Does this mean I get to be on TV?!”
Will was born at 9 lbs. 4 oz. He weighed almost 14 lbs. when he was two months old. But one weekend, something changed. He wouldn’t eat. He slept for two days straight. We couldn’t wake him up for more than a few moments. Finally, on a Sunday night, he woke up smiling. But, something was different.
Will started throwing up a number of times every day. He always ate again to fill his stomach back up and was always happy, but kept throwing up. This went on for two months. We were sent to a gastroenterologist to check for severe reflux. They treated him for reflux, but nothing changed. Tyler and I never felt settled that reflux was the root problem.
At Will’s four month check-up, he had only gained a couple of ounces. Our doctor realized that Will was breathing more than twice as fast as normal. She listened to his lungs and heard significant “crackles.” She sent us straight to the hospital.
When we got to the hospital, they took an x-ray of Will’s lungs. Both lungs were completely clouded. When they checked his oxygen levels, his oxygen saturation was 78. (Normal is around 95.) They immediately started him on oxygen. Once he was on oxygen, he never threw up again.
Will was diagnosed with a rare lung disease called Neuroendocrine Cell Hyperplasia of Infancy, or NEHI, an interstitial lung disease. This disease comes on suddenly, thus the change in Will when he was two months old.
The first few years of Will’s life were particularly difficult. We spent a lot of time at the hospital. He received many types of extra medicines and extra immunizations to try to prevent him from getting sick. He wore oxygen 24/7 for two years. Then he went to wearing oxygen only at night and when he was sick. Will still wears oxygen when he sleeps and he wears oxygen when he is at his desk at school. Some physical activities prove more difficult for him, but he keeps trying.
Our pediatrician thinks part of the reason we never thought to check Will for something really serious when he was two to four months old was because he was so happy and always smiling. He is a sweet boy who loves life. I am blessed to be part of his journey.
You can learn more about NEHI and other interstitial lung disease by clicking on the CHILD logo below.