...And its Back to Full Tube Feeds

Both the kid saw their GI doctor today.  One was quick - K.  Still having her bad constipation issues, but found out we were doing her Miralax wrong.  Her favorite way to have it was in chocolate milk...and it doesn't work well in milk.  So now we'll be giving it in orange juice or gatorade and hope it cooperates better.

Then there was Beans.  We knew there was a problem from the first.  Weigh in showed him down 2 pounds since last time - 2 months ago.  This was with him eating 2 meals a day plus snacks, tubing 3+ feeds a day and drinking 3+ feeds a day.  Not what we expected at all.

This has happened every time in his life where we try to go to more oral eating.  Theoretically, calories are calories regardless of the type of food or the route (tube or oral) they come from.  Reality with Blade shows us this isn't the case for some reason.  This could be because his eosinophilic esophagitis is flaring due to something he's eating or the formula he's receiving, or because for some reason the oral calories are either being burned faster or not being absorbed.  Time will tell.

This leads us to our current plan.  Beans will be receiving 6 tube feeds a day of 8 oz each of his PediaSmart formula.  Anything he take by mouth - drinking his formula, eating a snack - anything will be extra calories.  Follow up in 2 months and hopefully see weight gain then.  Regardless he'll be having another endoscopy to check the state of things.  We're also trying to get him in to see an allergist in the meantime.  He has a few signs (a rash on his face, a cough that won't go away, etc) that something he's eating isn't agreeing with him and we haven't been able to figure it out.

At least he hasn't lost his food.  That's his biggest fear.  We'll see where all this goes but cross your fingers that he can gain weight and that the doctor doesn't have to take his foods away when she gets all the results over the next few months.