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.