Well, It's been a week since Noah's procedures with the botox. It's been a crazy week at best.
He had a GJ Tube placed while he was under & I SPECIFICALLY asked his GI if the chances of it curling up back into his belly was increased bc of the botox, he assured me that is was rare. Well, guess who's tube coiled back up THURSDAY? Yep, it sure did. I was so angry and sad. So I spoke with his feeding team Friday and we agree that we would sedate him and get it put back in. Well, come to find out they won't sedate him to replace it. {we agreed to sedation because he is a really tough time getting it changed. He is hysterical and is traumatized by it, they strap him to a table and do it that way, which messes with his sensory issues and he HATES the X Ray machine over him....HATES.....} It was either do it awake on Friday or do it Saturday under general anesthesia. After thinking about it, we decided to do it awake. It sucked and was horrible and I will never do that to him again. There were tears all around. Noah walked into the room and lost all baby control. It was super fast, about 8 mins, but its so very hard to see your baby strapped to a table and them poking wires in and out of your babies belly.He did ok really, he didn't cry too much and was pretty still which made it go by fast. I am not gonna lie, I totally cried. Strong momma.....nope.......Anyway, it got replaced and so far so good.
We started G feeds Monday. They were going ok. He is digesting better. Food is not sitting around like it use to. He was digesting so fast, it's had me worried honestly..lol....I worried about dumping. He was empty in about 1.5 hrs. During that time, we tried small boluses, about 2 oz. About 30 mins after we would finish a feed he would start swallowing really loudly and a lot over and over and over.......he would burp a ton and bend over forward, like belly to thighs and get spacey, like he was doped up. It was very odd, the swallowing he has done before, but the spacey and bending over was all new. Like he was there, but not there at the same time. I am not sure what that was about, that has gotten better. Also, when I would vent him even an hr after a feed I couldn't get anything out.....ne food, ne spit bubbles, nada. That was so odd....we would have to let him vent for 5-10 mins before it would come out. Before the botox, it would just roll out of the extension no problem.....so weird. Monday he did well. Tues, same volume, but he threw up once. Humm..ok, still digesting ok, he threw up again, right after a feed.....and once more.....wth. Today, we have tried slower small boluses, 2 oz, and he has puked EVERY SINGLE ONE AT LEAST 2 TIMES!!!!!! GRRR---So I did his backpack on continuous for a few hrs, he was ok, then blah, up it all came. I don't know why he can't tolerate food into his belly. I simply don't get it. It doesn't matter if it's blenderized food, elecare, even water gets puked up most days. It doesn't seem to matter how fast it goes, how slow it goes...it comes up. His last small bolus was at 12, and at 3 he still had a small amount come out. Today has been a huge fail. He will see me grab his syringes and cry bc he says, "no I get sick...no." Then runs away. :( It SUCKS. So I am going back to J feeds for a few days. He isn't sick or act like he is getting sick, so it's not because he is ill. I just don't understand. Oh, his Biopsies came back on Friday, super fast hu....I was surprised, and they were all clear. Nothing abnormal, everything was perfect and his scope was clear and looked great. Not even irritation from his continuing vomiting. It's not normal, his vomiting & unable to tolorate food into his belly. Not that I want something wrong, but it's just so weird to me everything always comes back ok.When he is hooked up to J feeds, he is happy, funny, a goofy lil 2.5 yr old....I feed him into his belly and he is fussy, crabby, extra whiney....that tells me he is not comfortable, something is bugging him....WHY? I have no idea. I wish I had the reasons.......He is digesting better, but he won't stop vomiting and who knows how long the botox it going to stick around, could be weeks, days or months....we will have to wait and see. I am happy he is digesting better, but the vomiting is not better at all. What good is having better digestion when he can't keep food in there?
My searching continues.
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