Today we’re talking about what happens when a feeding tube is placed (also known as gtube placement) and what to expect the first couple of weeks after surgery, from a parent’s perspective.
Placing that feeding tube is done a few different ways, so I will talk about our particular experience. At the hospital, our son was given some sedation and a pediatric surgeon performed a procedure which was fairly quick- about 30-45 minutes. I am simplifying some details, but the doctor used a scope down my son’s mouth to look at the inside of his stomach and then made a small incision in stomach and inserted the feeding tube (after measuring to make sure the right size tube was placed). Our surgeon at this stage inserted a “real” feeding tube. Some surgeons insert a temporary tube, or Malecot, to be followed by a balloon or non-balloon feeding tube. Once the surgery was over, our son had a short stay in the hospital for a couple of days. Because a feeding tube incision is a fairly small incision, we could use Tylenol for pain but within a couple of days he didn’t seem uncomfortable.
There are a few important things to keep in mind during this initial period- one is to get a good “re-feeding plan” from a pediatric gastroenterologist doctor or nurse or a registered dietitian BEFORE you go home. If you’ve ever had a stomach virus then you know what re-feeding is. It’s the process of slowly reintroducing liquids and food to the stomach. That process is going to start in the hospital but the first week or so is going to require more careful feeding because movement in the stomach is decreased after the surgery. For example, you might be told to start with small amounts of water or Pedialyte for 24 hours and then move on to very small, more frequent amounts of formula, increasing gradually the volume over several days. Our son had an additional procedure called a nissen fundoplication (or nissen for short). This is where they wrap the top part of the stomach around the lower part of the esophagus in an effort to prevent reflux. If your child has this additional procedure, it is extra important to follow a re-feeding program because this procedure causes the stomach volume (the amount of liquid or food that the stomach can hold) to decrease. While a re-feeding program is very important, it is not too complicated and your health care practitioner should give you a program to follow- but if they don’t, you must ask. We were not sent home with a re-feeding program and our son ended up back in the hospital.
Second, there are some post-operative wound care instructions for the small incision- some cleaning instructions (wash gently with a gentle soap and water, pat dry). Also, like with a newly pierced ear, the feeding tube needs to be rotated so the healing skin doesn’t adhese or cling to the feeding tube. While you will start doing this just after the surgery, you will need to continue to do this twice a day for as long as your child has the feeding tube. Luckily, we did not have any complications, but some can occur of course, like with any surgery, so you should know what to look for (bleeding, a lot of oozing, redness or fever).
Third, and I feel really one of the most important things, is to make sure the “stomasite” or the hole that holds the feeding tube, heals well. And in order to do this you have to make sure that the feeding tube is secured to the stomach with split gauze and tape so that the feeding tube itself doesn’t move too much and continually irritate that new skin until the stoma is completely healed. A doctor or nurse in the GI practice can show you how to do this, and we actually did this for several months after my son’s feeding tube was placed. If the tube site doesn’t heal well, complications can develop and again, it’s not hard to do this, but it requires a small amount of effort- about 5 minutes twice a day, after you rotate the feeding tube, as discussed earlier.
Fourth, you are going to need some medical supplies with a feeding tube. Someone in the GI doctor or pediatric surgeon’s office is supposed to order these for you through a pediatric medical supply company. First, you want to make sure this is done before you leave the hospital. Understand that you do have a choice which medical supply company you use and some are better than others, so it will be helpful to speak with a nurse in the practice before the supplies are ordered (because the nurses generally the best information about which supply companies are going to provide the best service). You will typically receive the standard amount of each supply that is allowable under your insurance. If you find that you need more of a particular supply, you should talk to your doctor and explain what is going on and they can write a letter of medical necessity for the insurance company. This is a document which can override a typical allocation of a supply so that you can get a greater amount if needed.
I’ll go through each of the supplies and show you what they do.
Split gauze and tape – the video shows how those are used to dress the feeding tube and stoma. Within a few months (at least) of the surgery, you can start using something called a “button buddy” instead. Button buddies are small circular pads that snap or velcro around the feeding tube and keep the skin dry and cushioned around the feeding tube. Caregivers need to buy button buddies as they’re not considered a “medical supply” but there are several sellers on Etsy and I will link to a couple below.
G-tube extensions- G-tube extensions are like “straws” that carry food from the feeding syringe down into the feeding tube. There are two types of extensions- “Y” port and “bolus”. I’m going to talk about Y port extensions because that is what we use and is needed if you are giving medications on a regular basis but some parents prefer a bolus extension to give their children “boluses” or a larger volumes of formula or blended food in one setting (like a meal). The extension goes into the feeding tube and snaps in. You want to line up the lines on the extension and the feeding tube and then snap in. Once you snap it in, you want to make sure that you swivel the extension so that the line is opposite the line on the feeding tube. If you don’t do this, the extension will fall out, and if you are pushing food when the extension falls out, you will end up with food (or medication) everywhere but in the stomach. Food goes in the large opening and medications go in the small opening. If you are giving medicine, the food port must be closed and if you are giving medicine the food port must be closed- or else neither will reach the stomach!
Then you will receive syringes. The larger 35 mL syringes are typically used for feeding and venting. I will cover more about this in another video because that is a whole topic in itself. We have found that the best syringes for feeding are the 60 mL “miracle” o-ring syringes. These last the longest and the tip is the least frustrating for getting a good seal on the feeding extension. You will receive other syringes as well – 10 ml, 6 ml and 3 ml for administering medications through the feeding tube.
The feeding extension has a clip to prevent food from leaking back out of the stomach. The syringe is inserted first, the clip undone, the liquid is pushed, the clip is closed and the syringe is removed. I remember when we first got the feeding tube, this was a frustrating aspect because if you do the sequence out of order you will likely have a big mess on your hands. I have developed a pneumonic to make it easier to remember the order. SCPCS – syringe clip press clip syringe - say this like 30 times- you will be glad you did!
You also must have a back-up feeding tube. Regardless of whether you choose a balloon or non-balloon button (as discussed more below), you will need a back up BALLOON button at home so that a parent or caregiver can insert another feeding tube if the current feeding tube needs to be changed out or comes out for some other reason.
One more note about medical supplies, and I will do a separate video on medical supplies, but you will typically receive supplies on a monthly basis. They will typically be sent to your home. You cannot rely completely on the medical supply company to deliver your supplies on time each month. You must keep track of when your order is due and what you are supposed to get- if there’s a problem or you didn’t get your supplies (or all of your supplies), call the supply company right away. You do not want to get into a situation where you run out of medical supplies and typically it takes several business days to straighten out a missing or overdue supply order.
Lastly, many children, particularly infants and toddlers go home with a machine called a feeding pump and feeding bags that go with the feeding pump. Parents pour formula in a feeding bag and hook it up to the feeding pump. One end of the bag goes into the feeding extension which is attached to the feeding tube and the pump pushes formula into the feeding tube over a certain amount of time at a certain rate. This machine and the bags are provided by the medical supply company. If your child is going to be using a feeding pump, typically a nurse will teach you how to use the pump before you leave the hospital. If you end up using a different brand of feeding pump than you had in the hospital, the supply company representative will teach you how to use the new pump.
Some GI’s or pediatric surgeons insert a non-balloon feeding tube during the surgery and after eight weeks or so, change it out for a balloon button, once the stomasite has healed. Then parents are trained on how to change a balloon button. The balloon button is inserted into the stomach and then water (about 4-5 mL is typical, but the maximum amount that the balloon holds is printed on the port) is pushed into the port outside the stomach which fills a small balloon about the size of a grape inside the stomach and that is what keeps the gtube in place. Parents will then need to check the water once or twice a week (by inserting a syringe to the water port and pulling back to see how much water is left in the balloon) and if there is not enough, top off the balloon with additional water. When the parents change the balloon, which occurs every 2-3 months) they will drain the balloon, remove the feeding tube from the stomach, insert another feeding tube and refill the balloon on the new tube. Then they will need to put a feeding extension on the feeding tube and insert a syringe into the extension, pulling back on the plunger to see if stomach contents are filling the syringe- if so, they can be confident that the balloon was placed properly in the stomach.
Although balloon buttons are the most commonly used feeding tube, we actually far prefer a non-balloon button, which is inserted by a pediatric GI or pediatric surgeon’s office and typically lasts 6 months to 1 year. The reason we prefer a non-balloon button is because depending on a child’s level of stomach acid and other factors, the balloons can fail or leak, at which point the feeding tube will fall out and if this happens at night or while no one can see the tube, the stomasite closes incredibly fast- in 30 to 60 minutes- and, without intervention, it can require another surgery.
Finn’s balloon failed multiple times, and his feeding tube fell out multiple times. We were able to catch those before another surgery was required, but we know other families who weren’t so lucky. The stress of this happening caused us to have the non-balloon button installed in his pediatric surgeons office (it is a non-sedated five minute procedure) and it has been a great choice for us. Again, this gtube requires a visit to the doctor to change out, but it lasts 3-4 times as long as a balloon button and for us, reduced our stress greatly. And again, as we mentioned earlier, even if you use a non-balloon button, you will still need a balloon button as a backup in case the non-balloon button becomes dislodged.
In conclusion, we’ll recap the big points from today:
Button buddies: These or these
Medipore tape is here.
Miracle O-ring Feeding Syringes 60mL are here. (Yes, they are used to rehab squirrels but work great for feeding tubes! )
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Being a caregiver to a child with significant special needs for over a decade, Laura McGrath wants to provide support and information to the special needs community.
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