What to do When a G-Tube Falls Out and the Hole is Too Small to Replace it?

If you’ve ever been the caretaker for a tubie (someone who has a gastrotomy, a.k.a. g-tube), you’ve wondered what happens if it falls out.  In the back of your mind you fear that it’ll fall out and you won’t notice before the stoma (hole) closes.  I know this is many of our worries, because it just happened to me and many people responded with, “that’s one of my biggest fears!”

Some days I wonder, “does this crap happen to me just to give me something to write about?”

That may be, but since it did happen and I learned a thing or two I wished I had known in advance, I thought I’d share so others can hopefully benefit and avoid a drive to the ER wondering if your child is going to need surgery.  Note, I did not say you can avoid a trip to the ER.  I’d still recommend going in, but you just may have a better idea on the surgery or no surgery question.

Disclaimers:

Owen has a Mic-Key button so this information best fits this button.

Regardless of the type of g-tube your child has, please review your emergency plan with your doctor.  I’m sharing what was recommended as “rule of thumb” but every patient is different and has unique circumstances.

If the stoma is less than six weeks old, do not attempt to replace a g-tube.  Cover the stoma and get to a doctor as quickly as possible.

This information assumes you have been trained to replace a g-tube by a medical professional.  If you have not been trained to change g-tubes, cover the stoma and go to the doctor.

Emergency Kit:  You will want to keep this emergency kit with you at all times.  If at any time you try to replace a g-tube and can’t fit the tube into the stoma, this will be your back up plan.

  • 1-2 sizes of foley catheters that are smaller than your child’s g-tube.  (For example, Owen has a 12 French g-tube.  My kit has a 6 french and an 8 french foley catheter.  French measurement is the diameter of catheter.  Each unit is 1/3 mm).  To the right is an example of a Foley catheter. You should be able to get catheters from the same provider who supplies your g-tube replacements.
  • 5 ml syringe (use one from an old g-tube kit)
  • Lubricant (KY Jelly or similar)
  • A small diaper (newborn works best, but any size will do)
  • Tape that will stick to skin
  • Hand sanitizer (in case you’re not near a sink).

How to use your emergency kit when the g-tube won’t fit in the stoma:  The process is very similar to replacing a g-tube, however, you’ll instead use the foley as place holder to keep the stoma open until you can get to the doctor.

  1. With the syringe draw up the amount of water that your child’s g-tube calls for.  (3-5 ml are most common)
  2. Take catheter and dip the deflated balloon (balloon looks just like a g-tube balloon, note picture above) end in lubricant.
  3. Attempt to insert the catheter into the stoma so the balloon is fully inserted.  You may need to try the smaller size if the first one does not work.
    1. If neither size comfortable slides in, cover the stoma and go to the doctor.  Do not force it.
    2. If one fits, move on to step four.
  4. Fill the balloon with the syringe of water using med port.
  5. Wrap the open end of the catheter in the diaper to avoid stomach contents draining out and tape it closed.
  6. Tape the catheter onto the stomach to secure it from moving around or getting pulled.

Now, you can take your child to the doctor knowing that the stoma is still open.  The stoma should open a little wider than the size of the catheter so once you get to the doctor, they can try the next size up and then they will keep moving up the scale until the stoma is large enough to place the correct g-tube.  The process works well and shouldn’t cause much, if any discomfort, to the patient.  Owen did cry when they placed the g-tube but I think that it was more related to medical anxiety than actual pain.

Again, this is the general recommendation from the ER, however, please check with your doctor to make sure there is not a better plan for your child.  I really wish I would have known to have an emergency back up kit.  It would have lessened my fears and made for a much shorter ER visit.

For a tube replacement refresher, here is a great description with diagrams from BC Children’s in Canada.

tubie

Feeding Disorder versus Picky Eater

A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.

There are often two responses that people have regarding Owen’s eating.

  1. When he’s hungry enough, he’ll eat OR
  2. He’s just picky (or stubborn)

In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.

What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.

According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!

Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.

I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.

Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.

So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.

In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.

Click to Pin on Pinterest

Click to Pin on Pinterest

Forward Progress Only, Please

Maybe we jinxed ourselves by being part of a news report on how good he was doing?

Maybe it’s teething?  It’s true, teething can cause regression in other development areas.

Maybe, as was suggested by his doctor today, it’s because of all the gross motor development he’s been doing?

Maybe he was getting bored with the limited varieties of food his allergies allow him to eat.

Maybe he’s not as hungry after we went up on his formula calories?

I don’t know, what’s caused it, but I’m guessing you have already figured out Owen’s not doing so well with eating lately.  Actually, it’s pretty much been since Thanksgiving.  He was orally eating 300-400 calories a day, but now, he’s getting 50-70 on a good day.

We still sit three times a day, but most days he only eats one of the three.  I keep repeating to him (and myself) “I will not give up.  I will not give up.  I will not give up.”

We keep trying new foods.  Pickles, watermelon, apples dipped in caramel, carrots dipped in ranch dressing (allergy note, most ranch dressing brands have eggs), beef jerky, fruit leather.  He even gets Noosa Yoghurt where the frivolous use of the ‘h’ stands for “heck of a lot of money”.  That ‘h’ may also stand for “holy smokes, this is delicious”.  Of the luxury yogHurt, Owen will take a few bites of it, but it’s still not large amounts.

I try to keep focusing on the fact that he is still leaps and bounds ahead of where he was this summer when he wouldn’t swallow.  If I can get the spoon in his mouth before he slaps my hand away, he does swallow it.  He’s continuing to sample new textures and flavors, even if he’s not eating, he does explore foods most of the times that we sit to eat.  Also, each session at the table is great for his fine and gross motor skills.  He’s starting to throw food (not one of my favorite milestones), he’s really got that gravity concept and pincer grasp down.  He pinches food with his thumb and index finger and releases it to the floor with a smile (some milestones are much more exciting to this mom than others) and he’s communicating wonderfully when I say, “Owen do you want to eat?” and he shakes his head emphatically “no” (excuse the mellow drama, but… “just stab me in the heart, Owen”).

Just behind, “I will not give up.  I will not give up.  I will not give up” is “Thank God for g-tubes, Thank God for g-tubes, Thank God for g-tubes”.

I’d been warned by many that this would likely happen several times in his learning to eat.  I do realize that learning is not linear.  I can rationalize it to death.

Truth is, going backwards stinks.  But Owen won’t hear it from me.  “I will not give up.  I will not give up.  I will not give up…..”