G Feedings, Biopsies Results, Botox Update & Never Ending Vomiting

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.

Feeding Appointment, Botox and a New GJ

So, Noah had his Feeding Team appointment today....it went ok. The dr called him "complexed." No one ever has, I suppose he is being as no one can figure him out. He still has no diagnosis besides delayed emptying which his GI said he "failed badly." His emptying has been worse this past month. I am not sure why or what is going on in that tummy. He goes thru spells and this is a long one. His small bolus of food is sitting for over 5 hrs at a time. He can't get his calories in and in that he hasn't gained a single ounce in ONE YR. Noah is no longer Failure to Thrive, but he needs to gain weight and one year is just not ok without any gain.

 He is STILL vomiting no matter what we try. This past month he has vomited most feeds, a few times each. So he is puking anywhere from 2-10 times a day. Still. It sucks. He is now saying his tummy hurts and will then projectile vomit and he won't stop vomiting until every drop of food is up. It's painful to watch, much less to go thru. Can you imagine throwing up your b-fast, lunch, dinner, snacks, everyday, multiple times each every day? It has to be painful.

Our plan for now is to get a GJ placed. He is currently sporting a regular G tube. It's not working. He is vomiting so much and is miserable. We are to stop bolusing and to put him on continuous feeds. This is a step backwards, but it's the only way he doesn't throw up as much and he seems to be much happier. The problem with G feeding continuous for Noah is his emptying. It just doesn't empty so it sits and we can't run him very fast bc it just sits in his tummy. This leads to a few issues. 1) He can't get in what he needs calorie wise to grow, 2) he pukes it up then once again, losing calories, no growth. 3) He has to be hooked up 24 hrs a day and even at 50mls/hr that is only 1,200cals/mls not his goal of 1,400. We can run his G no more than 50mls/hr and that is pushing his tummy. {that's less than 2 oz an hr} I fought against a Gj bc it's really hard on Noah to get one places. He is hysterical. Screams, cries, shakes, gags, vomits, starts wheezing . He now sees anything that looks like an x ray and he flips out & if you touch his tube he freaks out and panics. He freaks out over anything medical, from weight checks, to anything, no matter how non-invasive. He is tramatized from Gj changes. I requested for him to be sedated to get it done. They agreed and that's great. I hate him being sedated, but I hate even more for him to go through all that for 15-20 mins, it's to the point where he is gasping for air. It's so hard for him and for momma to hold him down. Hurts to watch.

Our next stop is in IR to get another scope to look around and to do a dialtion and botox to his pylorus to keep it open in hopes it will help his empyting. They are now able to do all this in one stop, which is fantastic. We thought it was going to have to be 2 different visits, 2 sedations, but with it a one stop shop, that's much better. Anything to make is easier for Noah. With the botox GI said it could work for a few weeks, months or not at all. Nothing thus far has worked on Noah, we have tried several meds with no help at all, well maybe for a few days and then nada. IF Botox works then he would need to do it every 4 months, if it doesn't work then we are being refered to the motility clinic and do more testing there. The tentative date is set for next Wednesday the 22nd, they will call tomorrow to confirm this after getting it approve with his insurance of course, until then we are on continuous G feeds.

So, that's where we are now. Wish us luck and for Noah to feel better.