This week is Feeding Tube Awareness Week. I guess I am so immersed in all of this and have done so much reading, research and hands on learning about tubes that I forget most people don’t know much, if anything about them (I know I didn’t prior to October). The organization Feeding Tube Awareness is an amazing resource for information about tube feeding- I have gone there numerous times to have my questions answered- much quicker (and often better information) than calling the doctor’s office. There is a great article on their site for friends and family of tube fed kids, so if you know Grayson or another Tubie, you might want to check it out.

On their Facebook page this week, Feeding Tube Awareness is posting questions every day for families to answer to raise awareness. I am already a few days behind, but I am going to answer them here on my blog, and will answer the rest later in the week.

Day 1: Why awareness is important to my family – What would be different for me/my child if tube feeding was better understood? 

We have been so blessed that we have not had any real negative experiences with other people regarding the tube. When Grayson had the NG (tube going from his nose to his stomach), we got asked a lot if it was oxygen, but no one was rude or inappropriate. I guess the main thing I want people to know is we have no idea how long/permanent Grayson’s tube feeding will be. Right now, the feeding tube is keeping him alive- he eats almost nothing by mouth.

Also, tube feeding is definitely a last resort. For us, it was not a hard decision- when Grayson was hospitalized in October, he could keep nothing down, was diagnosed failure to thrive, and it was a very scary situation. A child does not get a feeding tube just for picky eating- there has to be a serious medical reason. It was a RELIEF when he was finally getting the amount of calories he needed to grow.

Day 2: Why does your child have a feeding tube?

This is kind of complicated. We think the underlying issue is Mitochondrial Disease, which impacts the energy the body’s cells produce. Mito can affect the functioning of every organ system in the body (right now, it’s affecting G’s muscles, brain, GI system, vision, hearing, and possibly lungs and liver). One of the ways it is impacting Grayson is it’s causing his stomach to empty about 3 times more slowly than it’s supposed to. This gastric emptying delay causes any food in his stomach to sit for hours, and because of his low muscle tone, a lot of times it comes right back up. Grayson is on continuous feeds 22 hours/day- we tried transitioning to bolus (more volume, less time) feeds, but after our GI doctor visit this morning, we are holding off and going back to continuous because of his constant vomiting.

In addition to Gastric Emptying Delay, Grayson has never eaten enough calories. From the time he was a tiny 5 pound newborn, eating has not been his thing. I didn’t realize it then, but his hospitalization at 5 days old due to dehydration was definite foreshadowing of eating issues to come. When he was bottle fed up until a year old, he would never drink more than 3-4 ounces at a time, a lot of times less. Solids never clicked, and eating became a really big stressor in our lives (it’s amazing to me to look back at my blog posts and how many of them dealt with my stress over his eating).

Eating is still stressful. On a good day, Grayson will eat a few bites of solid food, and maybe a cracker. He always eats better when we are at a restaurant or a friend’s house- drives me crazy! We are working in OT right now to try and get him to drink out of a straw. Eating therapy progress is slow, slow, slow, and it’s maddening. We will eventually probably have to get him some intense eating therapy, but right now we are focusing on him being stable and getting the vomiting stopped.

Day 3: What does a day with a tube fed child look like?

Our days are pretty “normal” except Grayson is attached to an IV pole or his backpack all day. He feeds 22 hours a day (his “break” is usually from 4-6 pm). He gets meds through his tube, which is SO easy to do at 6:00 AM, 9:00 AM, 2:00 PM, 6:00 PM and 9:00 PM. All of these times he’s awake except the 9:00 PM time, and I’ve gotten pretty good about giving him meds and not waking him up! We usually put enough formula in the bag for about 4 hours, and Ryan gets up at 1:00 AM and ads enough until the morning.

We usually have no problems with the tube when we are at home and it’s on the IV pole, but sometimes when we are out and we have to use the backpack, the bag moves and air gets in the tube, or it crimps, and it’s just annoying to fix it. But we just deal with it.

Since I know most of you don’t know how the tube works, I took a few pictures after Grayson’s bath tonight.

This is his button, right in the middle of his tummy.

Cute pad underneath, and the tube clips right into the button

There’s a med port right on the side to syringe meds right in

We thread the tube down his pants and it attaches to the pump

And now, instead of bottles, I wash syringes at night

We’ve really gotten into a tube feeding routine and no, it’s not the ideal way to feed my child, but it’s what’s working for now.