What happens if the button, tube, or NG gets pulled out?
- If your child has an NG, this is likely to happen, even with the best taping job. Your Tubie’s doctor should teach you how to reinsert the tube and check for placement. If they have not, they should instruct you on where to take your child for help (their office, the ER, etc.). It’s good to have a plan ahead of time.
- If your child has a balloon button or long tube, it is also very likely to happen. Either your child will pull it out, or you or another caregiver will. Extensions get caught when you are lifting your child (i.e. out of a crib or car seat), or can just get tangled and catch on something. And balloons do sometimes break.
- Talk with your Tubie’s doctor for instructions on what to do if the button/tube is pulled out in the first few months after surgery. In most cases, your child will need an X-ray to confirm proper placement if it is pulled out within the first 6-12 weeks after placement. Past the first few months, your child's doctor should teach you how to change the button yourself, and you should always have an extra button kit available.
- Depending on the situation, you can re-insert the button or tube that was pulled out. The stomach is not sterile, so a good rinse is all you need before putting it back in. Or you can use a new button/tube. But the stoma will start to close quickly, so you want to work fast to get something in. If you do not have a spare, the button that came out is missing, or the stoma has closed too much already, another backup option is to insert a Foley catheter, if you happen to have one. Suction catheters and NG tubes work too. Then you will likely need to visit the ER for help to get a new button in.
- A tip for helping to get a button back in after the stoma has started to close is to stick a Q-tip (with the cotton removed) into the button before putting the button in. This makes the “stem” portion of the button more rigid and easier to replace. Use lots of lubricant!
- If your child has a GJ and that comes out, you should have a spare G button, tube, or Foley you can insert to keep the stoma open. Then will need to contact your Tubie’s doctor ASAP to get a new GJ placed.
- Children with separate J tubes/buttons may or may not be able to replace these at home. Your doctor should let you know the protocol for your type of tube, which often depends on the type of surgery performed to place the tube.
- Children with long tubes or buttons that do not have a balloon will need to get to the doctor's office or the ER to have the tube/button replaced as soon as possible. Keep a spare Foley catheter around to hold the stoma open in the interim.
How do you tape an NG tube?
- There will be some trial and error to find a system that works best for you and your Tubie. One method is to use Tegaderm tape as close to the nose as possible, then put Steri-strips diagonally across the nose. You can also use Steri-strips to secure the tube close to the ear.
- Another method is to swipe Cavilon no-sting wipes on the cheek, then twist a piece of tape around the tube to keep it closer to the nose. Place a Tegaderm on the tube and cheek over the tape. The Cavilon helps the tape to stick, yet protects the skin when you take the tape off.
- You can also use Duoderm under the tape, so you aren’t peeling the tape itself directly off the skin as often.
- At night, try putting mitts or socks on your child’s hands to keep him from pulling the tube out.
The button is clogged! How do I unclog it?
- Some families use carbonated beverages like Coke or Sprite to try to unclog the tube, but there are mixed views about this being helpful. Oftentimes you will find that very hot water is more effective. Flush with soda or hot water, just like you would if you were administering medication. If you choose to try the soda, be sure to follow up with a flush of water so you are not leaving the sugar behind in the tube.
- Sometimes it is useful to try different size syringes, as you may be able to pull back with more force depending on the type of syringe. Try alternately pushing and pulling on the syringe to try to clear the blockage.
- For severe blockages, especially in children with GJ tubes or tubes that cannot be changed out, your doctor can prescribe pancreatic enzymes to put into the tube. The enzymes literally “eat” away the blockage.
What does Granulation Tissue look like and how can I avoid it?
- Granulation tissue is typically red or pink soft tissue that is bumpy or almost bubbly in nature. It is the body's attempt to “heal” the tube site. It bleeds very easily and may grow quite rapidly. You should check with your child's doctor if you see anything like this:
- To get rid of it, your doctor can use Silver Nitrate or may prescribe creams, such as Triamcinolone (Kenalog). There are several different strengths of Triamcinolone cream, so ask for a stronger version if the low strength does not work. Silver nitrate chemically “burns” off the granulation tissue already there, but does not prevent it from growing back. Make sure to cover the unaffected tissue around the stoma with petroleum jelly or a barrier cream to prevent damaging the healthy skin. It is normal for the granulation tissue to look brown and quite awful after having Silver Nitrate applied.
- Home remedies that may help include Tea Tree Oil, Maalox or another antacid, aloe vera (fresh or gel form), and Calmoseptine Ointment.
- Stabilizing the extensions by taping them to the tummy or pinning them can help by reducing friction.
- Keeping the area dry is extremely important. Some families prefer to keep the tube site open to air. At first, the site may leak, but after a month or so the leakage should diminish. Using G tube pads (see Products) can also help reduce friction and absorb leaks to keep the area dry. Certain types of dressings, such as Mepilex, may also be helpful.
- Have your doctor check sizing of the feeding tube as the wrong size or style can make granulation tissue worse.
What is causing this leakage around the tube site (stoma) or from the button?
- If your Tubie has a balloon button, check the balloon to see if it has the correct amount of water. If it is leaking, the button could be loose and could cause leakage around the stoma. If you still see leaking around the stoma after correcting the amount of water in the balloon, check with your Tubie’s doctor to confirm that the button is the right size.
- Check the connection between the button and extension. If that is leaking, it may be time for a new extension or even a new button. Note that many buttons have anti-reflux valves that break quite quickly, sometimes within days or hours. If the button leaks every time you open it, try flushing with warm water to see if that stops it. If you give meds directly into the button, sometimes the syringes cause the valve to be stuck open, which can also be fixed with flushing. If flushing does not help, the anti-reflux valve may be worn out and it may be time for a new button. Children whose anti-reflux valves wear out quickly may require you to put your finger over the opening in the button when connecting and disconnecting the extension set to prevent leakage.
- If you can’t tell where the leaking is coming from, or if it’s excessive or causing irritation, be sure to check with your Tubie’s doctor for help.
Is the stoma/tube site infected?
The signs of infection are as follows:
- Stoma is angry and red, weepy or oozing
- Pain or sensitivity when the feeding tube is touched
- Child starts to run a fever
Sometimes stomas can be infected in the tract on the inside, so there may be less visible signs other than pain and tenderness.
Consult your child's doctor if you suspect an infection. The doctor may perform a culture of the site, and will likely prescribe topical antibiotics, and in some cases oral antibiotics to treat the infection.
Why is my child retching?
- Retching occurs when a child tries to vomit but can't (as in children who have had a Nissen or fundoplication surgery), or when a child tries to vomit but has nothing to vomit. If retching is occurring, you may need to vent the stomach more often. Click here to see video tutorials that show how to vent
- Farrell bags allow for venting the stomach while feeding. Moreover, these bags gives formula a place to go until the stomach is better able to handle it. The food enters the bag and then is gravity fed back into the stomach.
How do I keep my child's GJ tube from migrating out of place?
- A common problem with GJ tubes is that the J part of the tube moves out of the small intestine and coils up in the belly. It may even move backwards into the esophagus. This is more likely to happen if a child has severe motility problems or frequent retching and vomiting. The easiest solution to this problem is to place a tube with a longer J tube length, particularly the 45cm length.
- If the tube is migrating due to frequent vomiting, retching, or spasms, medication may be used to reduce the symptoms causing migration. Some hospitals are also experimenting with anchoring the J portion of the tube using clips and other devices. This is not widely available currently.
- If the tube continues to migrate out of place, it may be wise to consider placing a separate J button directly into the small intestine.
How can I tell if the GJ tube is out of place?
- Common symptoms of a GJ tube being out of place include vomiting formula, feeding intolerance, GI pain, or formula coming out the G port.
- If you suspect your child's GJ tube may be out of place, the best way to determine if this is the case is to have the tube X-rayed using contrast or dye. You can also do an at home study using food dye or Kool Aid. Simply insert about 15ml of dyed formula or Kool Aid into the J tube and allow the G tube to drain into a diaper, basin, or bag. If the colored formula or Kool Aid immediately flows out of the G port, the tube may be out of place. It is possible, however, for formula to back flow into the stomach due to severe dysmotility in some children, which may cause this at home test to be invalid.
Why is my child vomiting?
- There are a number of variables to consider. The first is whether or not the child is sick. Feeds often need to be adjusted. See our blog post on the Joys of Cold and Flu Season
- Other variables include the feed schedule, how much is being fed, how fast, the caloric concentration and medical conditions. Make sure to read our blog post, Why is My Kid Vomiting?
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