Just 2 weeks after I learned about the newest in preventative surgeries for Eosinophillic Esophagitis, we were in the car driving over to the hospital. It happened faster than I even had time to worry about it! Quick and to the point! I like things that way. Gabriel's surgery was scheduled for Wednesday, Novermber 10.
The pediatric gastroentologist let me know about the newest advances in Gabriel's disorder. We will be performing surges, with a scope and biopsies, annually at the least. The procedure is fairly simple, but still includes anethesia, and all the surgical risks that go with it. Biopsies of the esophageal tissue are the only way to check for eosinophils (or, white blood cells, that don't normally live in the esophagus.) The doctor explained research is showing that inhalants, and airborne allergens are effecting the esophagus(something I already knew, from Gabriel's experience). The newest in medical research recommends yearly surgeries with biopsies of the esophagus to look for changes that can't be seen externally. These biopsies are so important because what we cant see on the outside, can be causing permanent damage in the future. I work terribly hard to keep Gabriel off a feeding tube today, but the doctors are most worried about tomorrow. Long term affects could be esophageal narrowing, inability to swallow, and long term inflammation related pain. I drove to the hospital crossing my fingers. A bad biopsy would mean a surgery every 3 months, until we could create a good one.
Two years ago, when Gabriel had this procedure the first time we learned much about his health. Following the results, the doctor recommended drinking steroids that are made to be inhaled, twice a day. These steroids caused water retention, loss of bone density, extreme hyperactivity, hormonal changes, and everything you imagine steroids to effect. I knew there had to be a better way. Maybe instead of covering, or treating the symptoms, eliminate the cause!
The doctor call me this evening. Knowing the statistics, and impact this disorder can have on a life, a took a deep breathe and prepared myself for what the doctor had to say. The doctor said, in a surprised tone "Gabriel's biopsies came out normal. What medicines is he taking daily." My answer? "For his esophagus, Dr. xxxx? None. He takes many daily meeds for his allergies and asthma, but I chose to control these symptoms with diet, rather than your drug recommendations." The doctor answered, "Well, wow, keep doing exactly what your doing. Because its working, and its working well. "
I was a bit frozen, in the superstore parkinglot. I wasn't able to fully digest what he said, before I called my sister. She was ready to throw a party. She has said only positive, encouraging things out loud for the last 2 weeks, but today she was honest. She found it hard to believe based on statistics, and other kids with this disorder. She said that she imagined happy things, but never predicted a positive end result. She was right. Based on the history of the disease, the odds were against us. I love beating the odds.
Gabriels diet is so specific and so extreme because he would otherwise fight against symptoms of vomiting, diarrhea, asthma, chocking, impaction, weight loss, and nutrient deficiency everyday. I am beyond proud to say that removing him from environments where inhalants like peanuts exist, turning his diet into a science, keeping my home clean of allergens, and visiting his doctors regularly has prevented the use of daily oral steroids, and kept him safe of white blood cell invasions in his esophagus walls. To an outsider, our life can seem chaotic, obsessive, and over the top. Today, I was reminded why I do everything that I do. I still believe that removing dangerous foods, before treating with strong, adult strength medicines is a safer option. I believe that Gabriel has grown 3 inches in the last 2 months because I work so hard to keep him healthy, and, in the words of the pediatric gastroentologist, I will "keep doing what Im doing, because its working."
So very proud of you!
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