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Post by Shawna on May 27, 2009 7:28:50 GMT -5
My son Dylan is alomst 7 and he has late infantile. He went to see his pulmonolgist recently because he has been fightning respiratory infections and pneumonia since last october. His doctor said that there really isnt anything for us to do, unless we want to give him trach. I honestly feel like he wouldnt want to live that way. He is almost always partially or completely obstructed when breathing. I want to make the best and right decision, but I also dont want to be a terrible mother. I really am torn on what is the best thing to do for my baby. I really am looking at not doing it, and I have talked to his Neurologist and his Primary care doctor, but if any of you from batten family have any suggestions or thoughts, they would be very helpful. Thanks a bunch.
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Post by katarina calderon on May 27, 2009 22:46:21 GMT -5
Shawna, I am very sorry that you are faced with making such a decision. It is very difficult. But I do think that only you and your immediate family can make it. You must trust your heart, and listen to it. If you know your boy wouldn't want to live with a trach then you have an answer, no matter how tough it is. We had to make a decision to take our 91/2 year old daughter off life support because we knew how she wanted to live her life. She was very clear about it, what was acceptable to her, and what wasn't. Each family needs to do what is right for them. There is no judgement, how could there be? We are all in the same lake, but the vessels we choose to build and sail are very different. I wish you peace.
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Post by Tanya on May 29, 2009 17:31:17 GMT -5
Our son is going on 8 years old and he has had a trach for just over a year. It definitely was a scary and tough decision to make. Our main goal is to make his life a comfortable as possible and our pediatrician had told us that it would make it more work for us but easier on him. That is what made us decide to do so. I am sure that I am not the only parent that second guesses our decisions when dealing with such choices, but I always remind myself about what he told me. I know this doesn't give you an answer, but hopefully it will help in some way. He was having difficulty breathing without it. He is still breathing just room air. Take care!!!
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Post by Trichelle Watkins on Jun 2, 2009 8:49:29 GMT -5
We too had a daughter that had a trach put in when she was 6 1/2. It was a scarry thing and I was adimant that it would never happen. I thought that would be prolonging her suffering. After speaking with several of her doctor's and also my brother-in-law who is a doctor. We made the decision that it was the best thing for her. It doesn't prolong life all it does is bring comfort in breathing. It makes it easy for you as the parent to get at the secreations they are unable to cough up. Before Hunter had the surgery she was on 4 liters of oxygen constantly. After the surgery she was on room air unless she was sick. I only wish I would have done it earlier. I know that I can't tell you what to do but that was our experience and I would do it again if I needed to. Good Luck!
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