Owen's Story

 

When Owen was just 5 months old he appeared to have a mild cold.  After several days my husband and I took him to the doctor. The doctor was not alarmed, even though Owen had a low pulse oximeter reading of 80, and confirmed our suspicions that Owen had a cold.  Two days later we visited the pediatrician again. This time Owen’s pulse oximeter value was 70, which is the lower limit of the device and the range which most people begin to show physical signs of hypoxemia (Owen was only slightly tachypneic)  Owen was hospitalized for a week and the doctors suspected he had RSV (his RSV test was negative).  Eventually Owen was released from the hospital even though his oxygen saturation never did fully recover. My husband and I were sent home with an oxygen tank and the advice that Owen would recover fully in a couple of days. Owen’s oxygen saturation did not improve and was hospitalized again a week later at Children’s Hospital in Denver. After about 4 months of tests including a high resolution CT, a bronchoscopy, a swallow test, steroids and several X-rays Owen was diagnosed with Neuroendocrine Cell Hyperplasia of Infancy (NEHI) syndrome.  NEHI is an interstitial lung disease that children usually grow out of by the age of  6 or 7. The treatment of NEHI is suplamental oxygen. Owen quickly adjusted to the cannula/tape, hose and oxygen tank.  We still have our moments when the cannula and hose get caught on things as Owen runs around the house and when the cannula and tape are pulled off.   Owen now tells everyone oxygen is coming in through his cannula to his nose and has been doing well. At 22 months he was able to come off of his daytime oxygen and now mainly only requires supplemental oxygen while he is sleeping.

More information about NEHI can be found here

NEHI information.

If you are interested in donating please go to http://www.firstgiving.com/fundraiser/bethweekley/nehi

these donations are to the ChILD foundation (Childrens Interstitial Lung Disease Foundation) http://www.child-foundation.com/