New GI Doc

Mom and I took Tucker to his new GI doctor last Thursday. Background Story: Tucker has had feeding issues since birth, of course, anyone who has met him knows that. However, he has never seemed to have any GI issues, such as problems digesting food or absorbing nutrients. Preemies are often at risk for all kinds of intestinal and digestive problems, so we felt very lucky. Tucker got a trach at 3 months old, along with a g-button to make sure he got nutrition, and a nissen fundoapplication to prevent any reflux or aspiration. The nissen was the most invasive surgery he had at that point, the surgeon wrapped his tummy up around the esophagus (kind 0f) because the risk of reflux was so bad and could be so harmful to his lungs. So for the last almost 4 years, Tucker has almost never spit up, vomited, or even burped! Kids can grow out of a nissen, but Tucker never seems to have done that. About 2 years ago Tucker gagged hard enough to spit up a little formula, and we totally freaked out. We took him to the surgeon, and they performed an XRay with barium liquid, which showed that his stomach emptied its contents very well, and that the nissen was still in place. Since then we have had no other issues. So the point of saying all this is....he has never really shown any discomfort from feeding. Some kids retch or try to vomit, even though they can't, when they eat too much, or eat certain foods. Tucker has taken everything and anything we give him, and since he never shows any outward signs of pain, we just assumed he is fine. Well, fast forward to last summer, he was 3 years old then. He was eating a little food by mouth, such as yogurt and applesauce, but hating every bit of it. We heard of this amazing doctor who could get any tube-fed kid to eat, so Mom and I took Tucker to see him. Well, he was hilarious, first of all! He joked throughout the whole appointment, and then said he had every hope that Tucker would be eating by mouth very soon. He looked through Tuck's chart and saw that he never had any GI issues, so he thought he would be an "easy" case. We put Tucker's feedings towards the evening, at 2pm, 6pm, and 10pm (with added calories) instead of the 4 feedings he has gotten since he came home from the NICU (8am, 12pm, 4pm, and 8pm). He also started him on Megace, which is an appetite stimulant. I fed Tucker by mouth several times each day, all summer! This may sound easy, but every single feeding is such a fight:( So anyways, he got much better, he wanted the food so much more. He started licking chips, especially! But he never seemed to actually swallow any food, no matter how hard he tried. I kept in contact with Dr Khoshoo the whole time through email, he was very easy to talk to and contact, and he told us to stick with the plan. Once Tucker got his trach out and we went back to 4 feedings a day (due to his need for nourishment in case of mitochondrial disorder) feeding progress backtracked. So we have been meaning to get back to Dr K, but we wanted a true mito answer first. So of course in March we found out that we will not get that answer for quite a while! As it turns out, tragically, Dr K died in a car accident in February. So we had to find a new GI doctor. We decided to go with one at Ochsner since Tucker has so many other docs there already. The Appointment: Tucker seemed to like his new GI doc, especially her legs (he loves legs, he is kind of embarassing at times)! She ordered an endoscopy, meaning that she will put a camera down his throat, look at his esophagus, stomach, and small intestine, along with taking biopsies of each part. She is looking for inflamed cells to indicate reflux and to make sure that his digestive system is absorbing all of the nutrients that we are giving him. Tucker's tummy has always been large and round, while his little bottom and legs are so skinny! She said that could be a sign that he is not absorbing all of his nutrients. I have asked other docs about this in the past, and they just said that was how he was built. He is very hard to buy clothes for! He currently wears about a 4T shirt, but he could fit into 12months shorts if they weren't so short on him! I started Tucker on a blended diet a few months ago. He has had only formula in his g-button since he got the g-button. Kids can live on formula forever, but we have always wanted to feed him "real" food. So a few months ago I found another MOD mom who started her daughter on a blended diet with great results, and I decided to try it. Tucker used to fall asleep after all 4 of his formula feedings, which made scheduling his day challenging! So since I started blending food for him to eat, he has gained about 3 pounds and he no longer fights me for his tube feedings. For those of you who don't know my family, we are all very short, small people! Tucker is still the smallest kid in his class, but to my family, lately he looks like some giant toddler:) A great change is that his food actually gives him energy instead of knocking him out. I can feed him and then go on to other activities instead of waiting for him to have a quick nap. The hard part for us is that we did not realize how hard it would be to get Tucker to bed at night, since his formula feeding obviously played such a big part into why he was so easy at bedtime! So many doctors do not like blended diets, and the new GI doctor was not super pleased about it. She said that most doctors agree that formula provides everything growing kids need, and she is in that camp. She thinks blending up Tuck's food is a lot of work for no real reason. Well, I agree, it is a TON of work! But at this point it seems to be helping him so much. She said she is fine with it, as long as we consult a dietician and go over every nutrient he is getting, which is fine with me. We also complained about Tucker's gassiness. Not the nicest topic, to be sure, but Oh my Goodness, this child is gassy! It is just something that we have always known, but I thought it was normal I guess. We attribute it to his nissen, and the fact that he can't burp, so it has to come out somewhere! His teachers have been really commenting about it lately, and saying how uncomfortable he seems. Now that we are thinking about it, we remember the NICU nurses commenting on how smelly Tucker was. They had to vent his g-button constantly, and even though they did that, he was very fussy and had gas pains all the time. So the doctor said we will look into that as well, but her first step is to have the endoscopy. So that is scheduled for next Monday (not tomorrow, but the next) so hopefully that will give us some answers.