Failure to thrive - Feeding tube?

My 8 month old son was just deemed malnourished and isn’t thriving. He has struggled with eating since he was about 5 months old. He was exclusively breastfed until a month ago, not by choice but because we could never get him to take or figure out a bottle or sippy.

Most every professional I talked to brushed me aside. They told me it would get better once he could start solids. He still has very little interest in solids or purées. The only thing we’ve found he likes are the infant puffs snacks and pancakes. But even then, he doesn’t want to breastfeed or have formula either.

It started as him not eating from 8 am until about 3 pm when he was around 4 and a half months old. And then the intake lessened by the month. Finally my pediatrician realized that he hasn’t gained any weight in three months and dropped to the 6% so he sent me to occupational therapy.

The feeding specialist believes it’s a swallowing issue and he’s become uncomfortable/ scared of eating. So we came up with some tactics and a great game plan. I was energized and felt good. For the first time since he was five months old, my son at 20 oz in a day. And he did it two days in a row! But then it came to a screeching halt. Since Wednesday, (today is Sunday) we’re lucky to get 14 oz in. It’s almost like he wakes up one morning and has forgotten how to swallow. Or has no appetite until 4 or 5 pm. It doesn’t matter how often or what I offer him. He doesn’t want more than an ounce at a time. Then at night he’s screaming because he’s starving.

I talked to the on call therapist last night because it’s getting really bad and he’s refusing everything. We have an appointment tomorrow to follow up. But they mentioned maybe having to do a feeding tube through his nose.

I’m terrified. I don’t know how to help him. And I have no idea how to care for a child that has a feeding tube. I have another child who is 7 who I have to take care of as well and my husband travels for weeks at a time for work. I’m essentially solo parenting it. I feel so out of my depth. But also panicking as I’m watching my beautiful baby slowly diminish. I’m so overwhelmed and don’t know how to move forward.

Has anyone else experienced anything like this or have any comforting words?

additional info -He has been on reflux medicine since about two months old. I see a SIGNIFICANT decline when we try to take him off of it.

-No currently allergies that we know of.

-He has only ever taken one formula, kendamil. (which surprise, surprise is currently going through a shortage 😩😒) He gags and refuses every other formula we’ve tried.

-I have tried cutting out dairy from my diet and didn’t see much difference.

-We’ve found one or two bottles before, where he would take them for a week or so. Only to then completely forget how to use it a week later. Gagging, spitting up, unable to swallow.

-He doesn’t trust feeding with anyone other than me. Which has put a huge mental strain on me. it’s not because of lack of trying. He just won’t.

*****A quick update to anyone following:****

Thank you so much for all of your words of wisdom. It’s been what I needed. Things took an unexpected turn and we had to go to the ER for dehydration. So a feeding tube is in the talks currently with the doctor. I will give another update once we have further info. And I will respond to everyone once I get a second to breathe! Thank you!!