Feeding Porter

Author:  Sarah

Ever since Porter's first bout with hyperammonemia he has been a sub-awesome eater.  I suppose that can mostly be attributed to the fact that we began a strict micromanaging of Porter's food consumption immediately after his OTC diagnosis.  Not only did he have to drink a nasty-tasting metabolic formula but the nitrogen scavenger medication had the unfortunate side effect of decreasing his appetite.  Add to that the rigorous feeding schedule which stressed us all out and who can blame him for avoiding food?

One of the things that has always annoyed me about the way we had to feed Porter was how unnatural it is.  My reality check (when I got really frustrated and tired) was that his survival was pretty "unnatural" and the whole crazy process of feeding him was how we kept him safe and alive.

In the spring after his diagnosis Porter's formula consumption started to drop off.  At first it was just an ounce or two here and there but eventually he was eating far less than he should which lead to concerns about dehydration, failure to thrive, and the dreaded catabolism.  Porter had a few rapid-re-admissions between April and May of 2016.  After that we had a relatively quiet summer thanks to the placement of a gastrostomy tube (G-tube).

A naso-gastric tube was placed when Porter was admitted to UVM prior to the placement of the G-tube

When our medical team suggested that Porter would benefit from a feeding tube Chris and I both balked at the idea.  My first thought was that feeding tubes are for people with severe disabilities; and while not being able to metabolize protein properly is a pretty HUGE disability it didn't seem to qualify in my mind.  I've since learned to love Porter's G-tube because it has allowed him to grow and thrive.  With the G-tube there was no more waking him in the middle of the night to eat or take medications, we could simply put it through his tube.  He packed on the pounds over the summer.  Suddenly folks were using words like "solid", "chunky", and my favorite phrase "he's all there" to describe him.  Our metabolic team wanted Porter to have extra reserves because "fat babies with OTC are healthy babies with OTC."   The G-tube allowed us to get there.

Do you eat while you sleep? If yes, then you probably have a G-tube.

Now, don't get me wrong.  G-tubes aren't all sunshine and rainbows.  Just ask Chris; he has at least one tubie nightmare per week.  One day Porter pulled his G-button completely out! A handful of times we either forgot to fully clamp the tube or it accidentally opened during his sleep or in the car seat and drained his entire full stomach. And, don't get us started on the automatic food pump. We've learned more about the physics of fluid dynamics than we ever thought we would. But, ultimately, the tube saved Porter's life so we try not to complain too much.

The consequence of the G-tube that we tried quite unsuccessfully to avoid was the development of an oral aversion.  It's sort of a blur now how it all happened.  The original plan after Porter's G-tube was placed was for us to offer him a bottle at each scheduled feeding and only use the G-tube if he didn't finish what we offered.  I honestly don't remember the transition.  All of a sudden Porter just wouldn't take a bottle any more.  We tried sippy cups and straw cups but he wasn't interested.  And why would he be?  Given the choice between tasting the yucky formula/doing the work of eating vs. just having that stuff pumped into your stomach so you can go about your day playing and exploring?  I think we'd all choose the latter.

Thanks to the guidance of our occupational therapist we were able to avoid a total oral aversion.  Porter would put non-food items in his mouth all the time and would occasionally (usually only for the OT) put a food item in his mouth or taste juice from a spoon.  Porter's muscle tone is good despite not having much experience with eating because of the exercises she prescribed.  All of that work and then actually feeding Porter through his tube took a lot of time.  Most of the fall and all the way up until transplant we were spending almost 8 hours a day feeding Porter.  THAT is a full time job.

We've made major gains in the eating department over the last week and a half.  We finally realized that the pre-transplant feeding schedule we were using for Porter was unnecessary.  It is safe for him to go without food for more than 6 hours now and we've been dying to eliminate the 10 pm feeding.  So one night we just didn't do it.  Lights out for us at 10:00 instead of 12:00 and it was fabulous!  We've reduced Porter's formula volume throughout the day by about half and are supplementing those calories and nutrients with real food.  By reducing the volume of formula we stimulated his appetite and now Porter is interested in eating.  He's been doing great so far even taking food off of Katie's plate when she's not looking!  The tricky part is helping him figure out how to move the food to the back of his mouth and swallow.  We've found that offering him frequent drinks helps wash things down.  He's still not eating enough food on his own so once he's decided he's had enough we throw the remaining food in the blender and make a puree that goes through the tube. More on Porter's "food smoothies" in a future post!

Fork skills

Scrambled Eggs!

I think I'll just finish this yogurt Katie left on the table.