Tuesday July 16, 2013
Aaron had his appointment with Dr M (GI Dr) today. He is having such a difficult time with granulation. Dr S burned it off once but it came right back. It looks so bad. Dr M was not very happy about Aaron's surgery. He did not understand why a fundal was not done. Even though he has a feeding tube and is on 60 ml/hr he can still vomit and aspirate. He said he was not consulted about the feeding tube at all. I guess I just assumed he had been consulted when they told me that they all thought this was in his best interest. He said he thinks a fundal should be done now but Aaron can't be put under again. The last 2 times he had problems with the last being the worst. I can see it from both sides. I wish he didn't have the tube because of all of the problems we are having and the fact that he is hooked to a IV pole 24 hours a day. I also wish that he could have bolus feedings instead of the continuous feed. On the other hand I am thankful that he has it because I am sure he is getting enough calories and I know he is getting all of his meds. I also know that has the Lennox Gastaut Syndrome progresses he will lose more motor function and it would have most likely be needed in the future and maybe he would have not been strong enough for the surgery at that point. I just need to let it go and trust that I made the right decision for Aaron. He looks so much healthier and is so much happier. I love this little boy and made the decision that I thought was best for him.
No comments:
Post a Comment