In this video we'll talk with renowned pediatric feeding therapist, Dr. Suzanne Evans Morris, about how to approach feeding a child with a feeding tube using a blended or blenderized diet.
Our discussion features Dr. Morris' book, Homemade Blended Formula Handbook, available through Amazon. The book includes informative articles and information about caloric needs, hydration and fiber requirements, lists of foods (proteins, fats and carbohydrates) to consider, and recipes to give you an idea of what a blended diet looks like.
Also mentioned: Real Food Blends
Looking for a dietitian to partner with to help create a blenderized whole foods diet for your child?
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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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In this video, we'll explore challenges and positive attributes of siblings of children with special needs, including the top three tips that parents can use to support their typical children.
Emotions chart for younger children- click here
Emotions chart for older children- click here
(Click titles below for Amazon links)
Books by Ann McCready:
If I Have to Tell You One More Time...: The Revolutionary Program That Gets Your Kids To Listen Without Nagging, Reminding, or Yelling
The Me, Me, Me Epidemic: A Step-by-Step Guide to Raising Capable, Grateful Kids in an Over-Entitled World
Other helpful resources:
Special Siblings: Growing up with a sibling who has special needs (First edition)
Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities
Today we’re talking about giving medication to kids through a feeding tube and the number one hack we’ve found for making the medication administration process easier.
Our son is like a lot of children with special needs in that he requires a fair amount of medication, both prescription and over-the-counter.
When he got a feeding tube many years ago, all his medication was in liquid form, or if a medication didn’t come in liquid form, it had to be compounded at a specialized pharmacy to be given in liquid form. This was pretty painful for several reasons:
But we developed a hack, and I’m sure someone else along the way has figured this out as well, but I am always surprised when we show doctors and nurses this trick that they’ve never seen it before, because it’s so simple. This hack has allowed us to substitute almost all of our son's liquid medications (except one) with tablets, including things like Tylenol and Advil/motrin.
One caveat: The medication technique discussed here can only be used with medication tablets that can be crushed. Almost all of our son’s medications, include over-the-counter medications, can be crushed. But certain medications, particularly extended release tablets (which have a special coating or are designed to dissolve slowly over time), cannot be crushed. Tube fed children typically are not prescribed extended release medications, because that format is typically incompatible with a feeding tube. Before you explore this idea, however, you do want to check with your child’s doctor or health care practitioner to make sure any medication your child takes can be dosed in a tablet form and can be “crushed”.
So on to our medication hack!
Remove the plunger from the syringe
Drop the tablet into the syringe and replace the plunger
Draw water into the syringe
The medication typically dissolves within a few minutes. Medication will dissolve more quickly if we use warm water and, with a couple of the thicker tablets, we snap them in half on the score mark which also helps them to dissolve faster. This technique is quick, clean, and we know we are consistently giving the same dose of medication each time. We no longer have medications compounded and the tablets take up much less space than the liquid counterparts. We also use this technique with Tylenol and motrin. If you have a baby or young child with a feeding tube, there are dye free chewable pain reliever tablets that should dissolve in this same way, so you may want to explore this option for smaller children.
And just a final thought on medication.....we always use dye-free medication whenever possible. Both of our children become irritable and have other significant behavior changes with food dye. In Europe, food dyes have largely been abandoned in products and food for children and require a warning label for these reasons (see the link here), but the US is a bit behind in this regard. Dyes are often added to children’s medication to make the medicine more palatable (or fun) for children, but they serve no therapeutic purpose and, in our case, actually cause harm. We find we have to be particularly careful with dyes added to liquid pain relievers, antibiotics and steroids. Most OTC medications have dye-free options and we have a note on file in our children’s file at the pharmacy not to add any dyes to prescribed medications.
I hope this medication hack may give you some help and ideas for your own medication administration.
Please leave a comment or ask a question and I’d love you to tell me if there are other topics you’d like me to cover in future videos!
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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