Daniel has had his G-tube for four months now, so I thought I would answer some of the questions I have gotten from people about it.
How easy is it to change the tube? I have only done one change (November 9th, three months post-surgery), and I had a nurse giving me instructions. Having said that, it took maybe 5 minutes at most. It is held in place with a balloon under the skin that has 6 ml of water in it. To change it, we draw the water out with a syringe, pull the tube out, put a new tube in (that has been lubricated), and then refill the balloon with 6 ml of new water. Insurance only pays for four tubes per year, so this is a quarterly occurrence at most.
What does it look like? This is the closed version.
This is open:
This is with the feeding extension in place:
Does it gross you out to have to work with it? Not really. After 9 1/2 years of being Daniel’s mom, I’m used to bodily fluids. The only really gross part (for me, at least) is when scabby material builds up around it (stomach contents and stuff), and scabs don’t freak me out. Even if it did gross me out, I’d have to suck it up because I’m his parent and have to take care of him.
Do your parents help at all? Mom helps me by holding his hands when I’m having to put ointment on it or when I have to clean around the opening on his abdomen, but I do everything else otherwise. From about Day 2 onward, I had to do feedings in the hospital with nurses watching and helping if needed, so I’m used to it and maybe have to interact with the tube for 30 seconds per feeding.
If I were to know that I would be gone for a couple days for surgery or something, Mom would learn how to do stuff but her preference is that he would take his calories by mouth. She’d probably give him milk with heavy whipping cream in it a couple times a day and whatever else he wanted to eat. (He likes strong cheeses like Swiss or sharp cheddar.)
Does he object to you working with it? He doesn’t like having it manipulated too much (he’s non-verbal so I don’t know if it’s painful or if it’s a weird sensation), but he’s fine with me attaching the feeding extension to it. Cleaning around it is probably not comfortable, but he’s getting better about it.
What do you give him through his tube? There are parents who blend their own foods and places online where you can buy blenderized diet stuff, but I stick to the Boost Kids Essentials 1.5 stuff we were given in the hospital. Insurance pays for everything (his feed bags, feeding extensions, syringes, formula, etc.) so I just call the Home Health department at Seattle Children’s Hospital when I need more of something. You can get the formula on Amazon.Com as well and a case of it (27 juice boxes) costs around $60.
If I have to, I can also give him medication through his tube. The only medication of his that doesn’t work that way is his Adderall ER which has to be given by mouth. (The beads in the capsule can’t be pulverized and the capsule is what does the extended release.) Otherwise, I use a syringe for liquid meds and crush pills up to mix in water to give with the syringe. There’s even a special port on the feeding extension for medication.
How does the food get into the tube? Some people do syringe feeds, and others use gravity bags (the bag hangs above the opening and you control the droplet rate, letting gravity do the work). Seattle Children’s Hospital has a pump that we rent on a monthly basis (insurance deals with them directly so I have no idea what the rent is per month), and we use that. It’s not complicated to use, and I had to learn how to use it without problems before they discharged us from the hospital. (Home Health came and worked with me for an hour before the first hands-on feeding I did.) The formula gets poured into a bolus (the plastic IV bag) and the particular feed bag we use is manufactured for the pump, so it has some special tubing attached that fits into the pump. I can prime it with my fingers if I have to (and do a little bit that way to get the air out of the bolus), but I usually just hold down the prime button on the pump to get it all the way through the tubing before I attach it to Daniel.
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