The "Oh, It's just GERD" Kid

The "Oh, it's just GERD" Kid

At 2 months after a pyloric stenosis ultrasound was clear, we were told our child who projectile vomited and was more than thriving "Just had GERD".  Oh how the words haunt me.  By 3 months, Noah had chronic congestion.  By 5 months, we realized he had sleep apnea and a pH probe showed severe reflux.  By 7 months, he was adenoid free but we saw no relief with the congestion.  The reflux rollercoaster seemed to be at a peak and times were up and other than the congestion seemed to improve. 

By 12 months, we noticed Noah's lips changing colors.  Our ENT suggested he might be aspirating and that he was indeed.  We attempted to thicken his feeds.  We ran loads of tests to rule out other causes for his aspiration.  We ran other tests to explain the reflux such as a gastric emptying study (that's a whole different contest).  We ran an impedence pH probe that linked aspiration to medicines (he was maxxed out on erythormycin, reglan, and prevacid) and also to reflux events.  At the end of the day my prayer had been answered.  We had no other options available and our doctor told us we couldn't leave the hospital until we did surgery and we were lucky we had made it to the hospital without him dying from an aspiration pneumonia.  Did I mention he'd never had chest xrays, wheezed, or ran fever?  Noah underwent his nissen fundoplication on July 1, 2006.  It was a holiday Saturday.  A special team was called in for his surgery.   

I wish I could say we were in the 90% of children who do well and have no complications post-operatively, but we are not.  Our road has been long.  Rather, we are in the 3% who have life-long complications because Noah had an underlying motility problem (Delayed Gastric Emptying that our first test missed and Intestinal Pseudo Obstruction) and he has had to continue to use his feeding tube, takes several medicines, and has led us to comprise a medical team that is located throughout the South East and all over an hour away.    The surgery was successful for Noah in that it saved his life.  The "wrap" works.  He doesn't reflux, but in his case he now has no way to empty his stomach contents when they are slow. 

Noah's situation isn't the norm.  His symptoms weren't the norm.  It wasn't "Just GERD", it was his life that we almost lost due to this disease.  The biggest thing I learned as a mother, a mentor, and a person was that you have instincts for a reason.  I had so many doctors laugh at me and tell me there was nothing wrong with him.  "Oh, that's rare" they would say.  But I persisted and I was right.  You don't have to have a medical degree or even a medical background to know your child better than anyone.  GERD changed our lives, but despite our current problems we're thankful this Thanksgiving and every day we still have our Noah and that our Nissen saved his life from "Just GERD".