Feeding Tubes and Swimming

Feeding Tubes and Swimming

It’s a common question. “My child has a surgically placed feeding tube. Can they go in the water?” To answer there’s some context required so it’s best to consult with your physician. This is especially true if the tube site is less than 6 months old. Assuming the tube site has completely healed from the surgery and the stoma is well established, the rest of the post applies to you.

If your child gets in the water and the water goes through his stoma it lands in his stomach which is the exact same place it would end up with any other child. There are plenty of places where swimming is simply a bad idea. Lakes can grow many different types of bacteria which can make you sick. If you’ve been swimming in a lake your whole life you’ve probably already been exposed to whatever is in it and it’s unlikely you’ll get sick. A child who has never swum there before might get very sick from that same bacteria.

Continue reading

Life with a Tubie

Life with a Tubie

In honor of Feeding Tube Awareness Week, I thought it would be interesting to share what it’s like to have a child with a feeding tube. Yes, there are differences in how we do things sometimes but not as many as you might think. Not every family’s experience is the same so there may be some significant differences between our routine and someone else’s.

The first thing we do when our son wakes up is feed him. We have a schedule but it’s flexible enough we don’t need to wake him earlier than he’s ready to get up. He still drinks from a bottle even though he’s almost 2 years old because, typically, kids drink less when they transition from a bottle. Once he’s eaten as much as he wants we vent the air out of his tube. After, we feed him the rest of his food by gravity. We attach a syringe to his feeding tube without the plunger and pour his formula into the syringe. We allow his stomach to accept the food at whatever rate it’s comfortable and read books while he’s being fed. For most of this process, he sits or lays in my lap. We read two to three books during the remainder of the feeding keeping him relaxed and comfortable. We repeat the feeding process every three to four hours.

Continue reading

Teaching a Tubie to Eat

Teaching a Tubie to Eat

I’ve come to realize parents whose children don’t have feeding difficulties take a lot of the learning process around eating for granted. Opening your mouth for food when it’s given to you is a learned behavior. Not choking on it once it’s in your mouth is a skill acquired through placing things in your mouth over and over again until your gag reflex is pushed back to its appropriate location. Chewing is a learned behavior as well as moving your tongue from side to side in order to place it appropriately between your teeth.

Motivation is the key to helping this process along and many children enjoy eating. They like the taste of food and they like the feeling they get when their belly is full. When a child’s tummy is frequently upset or it hurts to swallow they lose the motivation to swallow their food. Sometimes that causes children not to want anything in their mouth at all. Other times a child who loves to taste food will refuse to swallow and spits it back out once they’re finished with it. One thing I can guarantee, if you try to force a child to eat who isn’t eating because of pain or discomfort they will most certainly be one who does not permit anything in their mouth whatsoever.

Continue reading

Taking a Step Back

Having a child on a feeding tube is an emotionally difficult thing at times. No matter how hard I try, I’m frequently plagued by mom guilt about my child being unable to eat enough to keep himself alive. All of the feelings tangled up around our son’s feeding difficulties came out into the open today. There was no gentleness about it, the scab was ripped clear off the wound without mercy. There was a ton of notice it was coming, leaving the discomfort to steadily build alongside the anticipation.

Continue reading

What to Expect Before and After Your Child’s G-Tube Surgery

What to Expect Before and After Your Child’s G-Tube Surgery

Everyone’s experience is slightly different. Expect there to be some variation between your experiences and mine. Please, do not take any information in this post as medical advice. Any suggestions are simply that. Please do not take anything written here as reason to go against orders of your child’s doctor or nurse.

Before you leave home, I recommend taking the following with you:

  • Any medical supplies your child may need in case of an emergency on the way to the hospital.
  • Two days worth of clothes, and anything else you want to bring to stay the night. If there’s any concern about whether or not your child is developing an infection they may not discharge you after the first night.
  • A can of formula if your child is on something uncommon. If you can’t walk into your local grocery store and buy it, the hospital may not have it either.
  • Familiar cups / bottles / etc.

When you arrive at the hospital you’ll sign in and be invited to have a seat in the waiting room. The time of your surgery depends upon the age of your child. The youngest go in earliest in the morning. They’ll call you back when they’re ready to start with the paperwork and introductions.

Continue reading

Information to Share with Family Members and Friends

Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.

Continue reading

Eating Problems Requiring a G or JTube are More than Picky Eating

Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”

Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).

The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).

Continue reading

Eating Out with a Tubie

Waiter/Waitress: “Would you like a meal for him/her?”
Parent(s): “No thanks, he already ate before we left home. He’ll share with us if he wants something.”

This is an all too familiar experience for parents with children that either can’t or don’t want to eat. Continue reading

<span>%d</span> bloggers like this: