Sunday, July 29, 2007
Let me start by saying that I am not a blogger so forgive my rough edges. I am faced with deciding if my child will have life changing surgery. Ben has been hospitalized many times but 2 stays with bronchialitis and 4 for pneumonia. We have also had pneumonia's that didn't require hospitalization plus mysterious night vomiting. When our pneumonia's gained the label of recurrent we finally found a doc that agreed that it may be reflux that he is aspirating. Thee months ago we had an upper GI which showed CONSTANT reflux. A month later we had a Ph probe and bronchoscopy done. At the time of the studies, 3, yes 3, pulmonologists said that his lungs sounded clear with a bit of superficial congestion. One of those docs did the bronc and came out looking very grave and said "Well, his lungs are full of slop.". He went on to tell us that his lungs were literally full of puss and as quickly as they could suction it out they would fill back up. We stayed the night for the Ph probe and could see that Ben was refluxing almost all the time. He has never complained about pain. His upper probe was measuring 2.2, 2.1, and 1.8. The results came back that there were high levels of stomach enzymes in his lungs and Ph probe was the "worst" our doc had "ever seen". So we were sent to see a surgeon who suggested that we try meds first. Ben had a slight reaction so discontinued taking Raglan but started taking Prilosec. We are seeing a huge decrease in aspiration coughing, but it hasn't stopped. All of the docs that I have surrounded us with because I trust their opinions are saying that this is our best choice for Ben. All of them. The thing is we have been living with this for 4 1/2 years. Not teetering on death. Living! With a few very sad and dramatic hospital stays. I look at my HEALTHY and happy growing boy and can't imagine putting him through a procedure that will change his anatomy for the rest of his life. If we do this it will be the worst year of his life. And that is the best case scenario. On the other hand the next lung infection that he gets could cause long term lung damage or kill him. How can this be the best that they can do for my beautiful child?