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When Alex was four days old, we noticed that his breathing was so loud that you could hear it all over the house. and that he had a sunken chest. The pediatrician assured us that he was fine. By the time he was two years old, he was diagnosed with asthma after making many trips to the ER. These visits continued along with hospital admissions throughout the years. Alex was ten years old the first time that he had a problem swallowing. He was in pain and there was frothy saliva coming from his mouth along with mucus. The doctors did an endoscopy. They told us that it was a small plum seed and that his esophagus was inflamed with strictures and he should see a pediatric gastroenterologist. We were referred, and shortly after that he developed an ulceration in his esophagus. That was his first of multiple blood transfusions. He was put on many different medications, we bought him an electric bed to keep his head up all night, and there was one more chronic illness to take care of. It is rare that one is not helped by at least one of these medication. I asked the Allergist if he believed there was a correlation between his asthma and the GERD. “Of course,” he said. He told me that if he was a 50-year-old man, he would have known right away. What? Alex eventually had a Laproscopic Nissan Fundoplication, and soon learned that the surgery had failed. It fell apart in three weeks. It was not long before we found another specialist that did the same surgery but open. It was not long before he was not able to swallow at all and he was found to have Barrett’s esophagus. He was scheduled for an esophagectomy with a colonic interposition. As usual, I thought this would be it, the answer to our prayers. He did better for about a year, until there were more transfusions, visits to the E.R., stays in the hospital, and endless procedures. They were not able to continue with the endoscopies and Alex was unable to swallow. I was told by his doctor that he needed a PICC line. In his case they were used for TPN. He went through clotting and infections in the lines. Later they put a permanent G-Tube in his stomach to deliver cans of formula. His mental status was failing. Then his doctor told me that Alex was eligible for hospice. I couldn’t process that. That couldn’t be possible. It was two weeks after that I took Alex to the Emergency Room for the last time. I went to his room to wake him up the next morning. He was cold, his lips were blue and I started CPR and called 911. This time there wasn’t an ambulance to race him to the hospital. Instead my house was filled with policemen, firemen and the coroner.

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