A Year Later, Still Tube Feeding....

LJ still hasn't progressed with his oral intake.  His food aversion is still definitely alive and kicking. But, he at least shows interest in food and by that I mean he tolerates food, he just refuses to swallow it.  We've been talking to some new doctors about whether LJ is a candidate for a tube weaning program and we have a second opinion with a GI doctor about our options regarding his Mic-Key button.  This other doctor supposedly works with a nutritionist who is much more compassionate about their approach to finding the right recipe of calories from tube feedings and calories from pureed table foods fed (this would add bulk and also really help on the severe reflux-front) via syringe into the tube. The ultimate equation would actually be a recipe for calorie reduction so that Noodles can actually experience hunger and getting us closer to having his Gtube removed.

For those of you that don't know, LJ's button has been leaking every time he has a bolus feeding and causes great discomfort when the stomach acids touch his skin.

Our GI doctor thinks the hole is too big, and since he's in the correct size Mic-Key button he should be admitted to the hospital so they can take out the Mic-Key button and watch the hole close up- putting a button back in at the very last possible second. That makes me way too nervous.  If it doesn't work, he'd have to have another surgery and get a G-J Tube.  G-J Tubes are aptly named because there are two separate routes included inside the feeding tube.  One route is delivered into the stomach (gastrostomy) and one goes directly to the small intestines (jejunum).  This entails that all feedings be done on a 24 continuous (much slower speed than what we currently experience) basis though since you can't overload the small intestines without a complete catastrophe. We're so NOT interested in taking backward steps; we hope LJ can become an eater, so you can assume why we are seeking another opinion.

We have been grateful for the dialogue with Dr. Markus Wilken in Germany and fellow blogland friend, Jenny, in Seattle who's beautiful, little boy Heath has officially become an eater.  Markus says that the earlier a child can control his own needs, the better the self-regulation in many other areas as well.  The first step to helping prepare your child for a tube wean is making sure your child is not afraid of food.  He also says "on the other side, an interest in food, eating, being fed is always a good sign your child is ready though not in all cases an inclusion criteria." There are lots more influencing factors.  Unfortunately we just missed Markus' visit to Seattle two weeks ago, so we are trying to "virtually" work with him and finding new members for our local team to better understand (affirm) LJ's aversion. Jenny gave me such wonderful words of wisdom, "All we can do is respect that battle and create the conditions for him to make his choice by allowing him to be genuinely hungry, and supporting what comes as a result of hunger." I think as tough as this is for Josh an I, it's got to be 100 times tougher for LJ.

Here's a journal of one of our food playtimes: we tried 5 different types of food- applesauce, pureed carrots, diced avocado, french fries and apple rings. LJ still would much rather feed others than be fed himself. There's also some video of him playing with his iPad and pretend food.  He prefers the latter!


Play With Your Food, LJ from Jenn S on Vimeo.

LJ Using iPad to Choose Play Food from Jenn S on Vimeo.