Tuesday, September 22, 2009

Quality of Life

Abraham saw Gi doctor on Friday. The doctor felt that he is well nourished and if he gets too many fat rolls on him then that is not healthy either. His recommendation was to keep NG tube in until after winter months due to RSV season. Also to give Periactin twice daily and encourage oral feeds. Abraham has had a runny nose and cough. Is he not wanting to eat because he does not feel good or because the more mature portions of the brain would be taking over such as suck/swallow, ect at this point in time. If he gets to a point where he needs a G-tube (surgically implanted tube that feeds directly into the stomach) and is a complete vegetable I question why would keep going. He is responsive to sound/touch and is interactive at times however will this also become just a memory. If he won't have any quality of life then I question why spend all the energy and effort for him to stay here on earth. At least in heaven he would his quality of life would be much better. We are not at this point yet however in May 2010 we will have a better idea.May 2010 will be when he will be 12 months corrected age, 15 months actual. No medical professional is pushing us this way as they "see many kids with G-tubes" "many kids/people with different qualities of life". It becomes the normal when you work in that environment however in the community this is not the normal. I have meet former premature babies that walk, talk and play and have a good quality of life. If my son is dependent on diapers and artificial force feeding and not interactive with his world for the rest of his life, which might be 80 plus years, then why continue with all the procedures and interventions. We are not at this point yet however there is potential that we will be faced with such a decision.

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