I am sorry to hear about this unfortunate situation.
I really don't have any new or insightful suggestions to help with this case. If there is continued difficulty in enteral nutrition, you can consider going with a parenteral route (i.e. either partial or total IV route of nutrition). This should be considered long term, but until your surgeon or GI doc can figure out what can be done to help with the J- or G-tube this can be considered as temporizing measure.
I would also suggest another option - possibly at a second major academic medical facility.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
I also had a son 22 with servere reflux and gastro problems since birth. In May of 2004 my son started vomiting here and there. He had a G-tube placed when he was 3 and until he turned 16. It was removed and he ate pureed food and had no episodes of vomiting and had gained weight appropriately for his size. He was 54 inches and weighed 92 pounds in October 2004. He was born blind, CP, serverly mentally challanged, non verbal, and non ambulatory. He also was total care. He did well for 6 yrs. and then all of a sudden he started with the vomiting. He became so ill during labor day weekend I brought him to the ER. He was admitted and test were run. He had a nasel tube placed and they at first did not know what was happening. They claimed my son had a ileus. He stayed in that hospital for 1 1/2 weeks and they was transmitted to a Universtity hospital, better quailfied to have more tests to diagnose his problems. He also had a slow gastric emptying study then which showed he had severe gastroperisis. They then needed to get nutrition in him and placed a TPN tube in main artery for feedings. He came home after 54 days in the hospitals and from the day he was home he continued to vomit green bile. Some days every 15 minutes for 12 hours. I called and called the doctors and they just said we dont know why he is doing it and it is something that just is happening with him. He was seen for follow ups but on inital issues they would not see him when I called continuiously with this vomiting.
March 5th, 2005 he woke me at an early 3 am. He was not feeling so well and was moaning. I had shut his tube feedings off. He did ok until 6 am but when awakening he started vomitting, first claer then green then brown. I called the gastro doctor the first time and he said lets watch him. The second call 1 hour later he states it seems like his ileus is back. The third time I said I heard air coming from his stomach (j-Tube site) and when rolling him over his stoamch was like a hard basketball. He was picked up by ambulance 5 minutes later. They did tests, Xrays etc.... They ended up doing emergency surgery. They needed to remove 14 inches of his intestine and when reconnecting the good part it discinagrated. We had to wait 24 hrs, to see if indeed the tissue took. It didnt and his small, large intestine to his rectum was black due to NO blood supply. We then needed to take him off life support. He passed away 32 minutes after discontinuing the life support. He fought like a trooper til the end and had to make that discission in the matter of minutes. It was the hardest thing I ever had to do. He is no longer suffering but is saddly m issed everyday.
He ended up with a perferated bowel due to malrotation and sepsis syndrome. He was the best thing that ever happened to me and I personally would have as many tests done as possible, make sure he does not have an obstruction or ilues or anything that he can not tell you about. Doctors sometimes it is a guess to them also.
I wished there was more everyone could have done, of course. Maybe it was my sons time, part of me believe that they could have done something for him from Oct-March and they did not.
I wish you well and empithize and sympathize with you.
Good LUCK in all you do for your child. God Bless you all!