Surgery, Docs & Hospitalizations
What questions should I ask before getting a G tube placed?
What is the recovery for a G tube surgery? What can I expect? 
We are moving from a G to a GJ. What can I expect? 
What should we bring to the hospital?  
Do I need a pediatric gastroenterologist for my tube fed child, even if the main condition isn't GI-related?
Who else should be on my child's medical team? 
What about a Nissen Fundoplication?

What questions should I ask before getting a G tube placed?
The following are some questions you may want to ask your surgeon, GI, or interventional radiologist before getting a G tube placed:
  • Is this an open or laproscopic surgery procedure, or will it be performed by endoscope?
  • Will my child be receiving a long tube or button? If a long tube, when can we change to a button? If a button, what kind/brand? (such as AMT Mini, Mickey, Bard, balloon, no balloon)
  • What should I expect as far as recovery? How long do you expect my child to be in the hospital?
  • What is your plan for pain management after surgery? What pain meds will be given, and will they be given continuously (slow drip all the time) or as a bolus (a certain amount every few hours)? Adequate pain management after surgery is very important and will lessen recovery time. Do not be afraid to be an advocate for your child to make sure their pain is well controlled, and having a plan ahead of time is especially helpful.  
  • How soon after surgery should we expect to start feeding through the tube? 
  • Who will determine the feeding plan, and can I be a part of those decisions? Especially if you have been doing NG feeds for a while, you know what your child can tolerate, and you know what to watch for in terms of signs of discomfort. Some Tubies need to start out slower or in smaller amounts, especially if they have had a Nissen, and it is important to try to avoid causing retching from going too fast.
  • If we have problems once we get home, who do we contact? 
  • Who will provide ongoing care? Some Pediatric Surgeons are the go-to doctors for any complications or questions, or you may be referred to the GI doctor for any follow up care or questions.
  • What do I do if the button is accidentally pulled out prior to the stoma healing?
  • When will I learn to change the button myself?
  • How do I obtain a backup button kit to keep on hand?
  • What other supplies do I need, such as extension sets, syringes, adaptors, feeding bags, or feeding pump? Where do I get them?

What is the recovery for a G tube surgery? What can I expect? 
  • The G tube surgery can be performed in three ways: surgically through small incisions using a laparoscope, surgically using a larger open incision, or endoscopically using a scope into the stomach to create the stoma from the inside. The endoscopic method has become the method of choice at many hospitals; however, some institutions still place tubes surgically, and children with anatomic abnormalities or needing multiple procedures may require a surgical placement.  
  • Some hospitals will give Tylenol for pain, some Tylenol with codeine, and some will give narcotics. It depends on the specifics of your child’s surgery..
  • Your child will likely only need to be in the hospital for a day or two, depending upon how well he tolerates his feeds after, as well as your familiarity with tube feeding. The stay will be longer if a Nissen fundoplication is also performed.
  • The nurses or someone from your DME supply company should train you on how to do everything before your child is discharged. Be sure to try everything yourself, and to ask lots of questions to make sure you are comfortable.
  • Your child’s tummy may be a little sensitive for a while, maybe up to a few weeks. But once the stoma has healed, your child should be able to do tummy time again with no problems.

We are moving from a G to a GJ. What can I expect? 
  • In the vast majority of cases the same stoma is used to convert a G to a GJ.
  • GJ changes are done in Interventional Radiology using continuous X-rays (fluoroscopy) to place the GJ tube into the intestines. Many hospitals use a light sedative such as Versed to perform GJ changes. There is no pain in placing a GJ, but children often are not able to keep still for the procedure. Older children typically do not need sedation. Larger children’s hospitals who conduct a lot of GJ changes may not use any anesthetics or sedatives to perform the change.
  • The recovery is only due to any sedatives that may have been used. Feeding can typically begin shortly after the change. 
  • Start slow when feeding to the J and slowly increase rates as your child adjusts to J feeding. Children on J feeds need slow, continuous feeds over 16-24 hours per day.

What should we bring to the hospital?  
  • Small toys and DVDs. Nearly all hospitals will have access to some type of DVD player. Child Life staff will also have toys, games and DVDs available. 
  • Overnight diapers. Nurses will let you use overnight diapers as long as you have an extra one for them to weigh if they need to monitor output.
  • Wipes. They may not always have them, even at a pediatric hospital. 
  • Formula and medications. Contact the hospital in advance to find out if they stock your exact formula, as well as all your child’s medications. You may need to bring formula with you. Bring your own medications just in case.
  • Pajamas and bedding. If your child has highly sensitive skin or severe allergies, consider bringing their own pajamas and bedding. Some children also prefer their own familiar items.
  • Slippers and comfy clothing for you.
  • Snacks or food for you. There should be a community fridge, or possibly one in your child’s room. You won’t always have time to run to the cafeteria.
  • Something light to read. If your child is going to be sleeping a lot, you will need something to do. But you will likely be interrupted often by nurses or doctors checking in, so pick something easy.

Do I need a pediatric gastroenterologist for my Tubie, even if the main condition isn't GI-related?
  • It depends. Some feel strongly that a GI should be part of your child's team, even if the primary condition is cardiac, pulmonary, genetic, etc. Tubes get pulled out, they need to be changed, brands can change, equipment can change, and although other specialists may be aware, they don't have the same level of expertise. The vast majority of Tubies have GIs.
  • But there are also other doctors that can manage tubes, such as a pediatric surgeon. They may prefer to be the one to manage tube care directly, as far as button changes, equipment orders, and problems such as leaking or granulation tissue. When the tube is placed, ask the doctor who you should follow up with on these issues. Some hospitals have tube feeding teams, usually made up of a nurse and specialists from several disciplines, who provide follow up care.
  • Some pediatricians are comfortable managing the intake amounts and volumes of a Tubie. But that doesn’t mean they are the most familiar with things common in the Tubie world, such as volume intolerance or severe GERD. If your Tubie is having trouble tolerating feeds or is not growing properly, it may be time to consult with a pediatric GI.

Who else should be on my child's medical team? 
  • In addition to doctors, a lot of Tubie parents benefit from having interaction with a nutritionist or dietitian to help determine appropriate calorie and liquid intakes. Nutritional needs change depending if you are trying to have your child "catch up" on weight, maintain or cut back on gaining. There are also a wide variety of formula options for kids who tube fed and a nutritionist can help find what is right for your child. 
  • Another possible member of the team is a feeding therapist. Your Tubie may have an oral aversion or may associate eating with pain (from GERD, motility problems, or food intolerances, or even just gagging). Tubies often need help to learn that eating can be pleasurable, or in the case of aspiration, may need help learning to do it properly. Feeding therapists can be Speech Language Pathologists or Occupational Therapists. Feeding therapy may be offered through your hospital or through Early Intervention. If your child is older, some therapy may be provided at school. It can be more challenging to find feeding resources over the age of 3. 

​What about Nissen Fundplication? 
Click here for more information on Nissen Fundoplication.