Feeding struggles continue

Macsen is the strongest kid I know. Because my milk is drying up (Hello - 3 years pumping is enough!) I am having to give him more and more "chocolate milk" (at this point this consists of 3 scoops carnation instant breakfast and 1 scoop of IQ'd.) He is not going along with this plan and instead just holds out for his 1 bottle of breastmilk. He has cut down form 4-6 8 oz bottles to 1 of breastmilk and maybe 8 oz over the course of the ENTIRE day of the chocolate milk. We have played around with so many variations of mixes and nothing makes a difference - he is also refusing to drink it in his sleep which used to work. On the plus side he loves his speech therapist and asks me to "Eat!!!" several times a day. We sit down and go through several choices like he has at his feeding therapy but he still is only able to swallow the tiniest nibbles. Once he gets a teaspoon or 2 in, 1 nibble at a time, he's done and ready to get down. He can't go on like this. Something has to give. Watching him eat it is clear he likes to eat - likes the flavors- but he still gags on anything more than 1/8 of a teaspoon. If he would eat 1/8 of a teaspoon of yogurt consistently I would sit there for the hour it would take to eat 4 oz - but it doesn't work that way with him. A few bites in and he is done. I am very frustrated and worried and I know we need to keep pushing to find some answers. He has lost a whole pound - from his almost 30 lbs- in the past 5 days.
I am reading a lot about the vagus nerve - it can be damaged during heart surgery. If it is damaged it can cause all kinds of symptoms like nausea, vomiting, trouble swallowing, slow stomach emptying, constipation, pain. Sounds just like Macsen. There is a doctor out of Shands in Gainesville, Fl who uses a pacemaker to stimulate the stomach to contract since the nerve is not telling the stomach or intestines to contract enabling proper digestion. A friend's little boy is undergoing that surgery in a week. I am going to contact the doctor and will bring M to see him. Finding a GI that takes Macsen's unique circulation and possible side effects from the surgeries into account has been impossible for us so I hope this guy is "the one." His hospital is in Gainesville which is 6 hours away but he does have a satellite office that is a mere 2 hours. We need to also probably try to find a new endocrinologist as well bc little man is absolutely not growing. Today he was in 24 month pants and they were a little long.
In the meantime I think I will restart his Periactin - we stopped using it bc it no longer seemed effective for him. Maybe now, with such a big break, it will work again. Also his dose prescribed by his Atlanta GI is very low apparently and may be why it wasn't effective for him after the first month. He can't continue on 8-16 oz  of milk a day. He'll waste away. We would need to put in a feeding tube - and may still. If 2 years of feeding therapy can't help him learn to eat what can we do?
I think we are going to have to get some more specialists on board - doctors who don't say "He'll eat if he gets hungry." "Or my favorite "it's behavioral." Like an 8 month baby has learned if he gags on everything but milk he can manipulate his parents into doing what he wants. Right.
I am not looking forward to more getting to know you meetings with new doctors - I wish I could say "Here's my blog. Here's everything we have tried. Here's what's going on." Lol - if only. It's time though. Sadly, this last surgery wasn't the immediate, miraculous answer to Macsen's eating and growing problems despite my many prayers that it would fix those things.
He IS more pink and has better stamina. And he is talking up a storm which is the biggest, most drastic change from a month ago.  New Words - he can say many of his colors and he knows which family member likes which colors which is adorable and sweet. "Dadda - Boo-wa (blue.)" He points to himself and says "Waa (red)" and "Mama - bup-ple (purple.)" He says "He-whoa RoRo" for Hiro the dog. An improvement on just "roro" that he was saying last week. He says "Mummy (yummy.)" He says "Poo Poo Pee Pee" and can tell you which is which - "Whoa (no) PooPoo Mama - PeePee." And I've gotten him to say "MeMeMe" which is helpful bc he can't say his own name and never picked a sign like he did for each of his sisters so having a way for him to get across that he is talking about himself has been so helpful. I hope it starts helping him to cut out some of his frustrated screaming jags he goes on. He also is really responding to play therapy where he wasn't before - he now regularly mimics your sounds and attempts to sing songs where he never would before. The flip side of that is he is  rejecting the card based speech therapy aids that worked with him before. He completely shuts down when he sees them. He likes to keep us on our toes :)