Special Needs
Becoming a tubie
we've decided to go g-tube and as weird as it sounds i'm almost excited. i'm happy to not worry anymore about how much he's eating or drinking. i'm happy meds will be easier.
we're putting in the call today to our feeding clinic to proceed.
i was wondering how they decide what sort of schedule to put your child on and what sort of diet? he eats everything by mouth and does really well just now he's dropped off.
they said the surgery is about 15 minutes and it's only an overnight. most kids do really well with it.
obviously i know that they will go over everything with us. i just like to hear before we go. also does anyone have the new mini-one button? i've read it's much smaller than the mic-key.
This discussion has been closed.
Re: Becoming a tubie
I totally understand that this would be exciting. I can't imagine the stress that would come with not having a tube for a child in the place where DD is! From our experience every doctor seems to have different philosophies on what the transition from oral to tube or tube to oral should look like.
The tube itself: We have a mic-key and LOVE it. Definitely don't do anything with a barb! We've tried the mini-one at the hospital and aren't really in love. They are thinner, but I found that it leaked more. It seemed like the connections between the extension and tube weren't close enough, but I'm not sure if that's because we were using mickey extensions while we had the mini-one button. (Instead of all mini-one brand). Right now we use a mic-key tube and mini-one extensions.
In terms of what to eat: A very typical thing for doctors to recommend is pediasure or some other 30 cal/oz formula to try to bulk the child up. We've DDs greatest success to be when we stopped formula. For us, doing a diet of whole foods that had been pureed in our industrial strength blender has been fabulous. She eats a grain and fruit for breakfast, meat for lunch, and a meat and grain for dinner with "snacks" in between. Everything she eats is according to the food pyramid with the recommended food groups and amounts of intake. We have it all double-checked by a nutritionist. (I think you'd made a post about her?) There's a yahoo group for the blended diet, as well as a book called Home-made Blended Formula Handbook, and website: https://forums.blenderizeddiet.net/index.php
The schedule will vary from child to child. If its somebody who has a lot of emesis the standard is to usually do a small drip of continuous pumping. If your son is used to eating meals, he should be able to handle a bolus--either gravity or pushing with the plunger. Gravity means that you don't have a plunger. As long as he's hungry, the food will keep going down, but when his belly gets filled up, it'll start coming back up the tube. I prefer to do gravity whenever possible, but when DDs meals are too thick, we use the plunger and go at a bite-size pace (pushing as much/often as I would expect for her to eat orally if we weren't on a tube). We eat every 3 hours. I've worked very hard to make sure her meals overlap with ours so that she can still join us at the table and try some oral food first. Some doctors will recommend overnight food. We found this very hard on DD, since her body never got a chance to fully rest.
Other thoughts: In general, I feel like a lot of people move towards this awkwardly sterile way of thinking when a g-tube comes into play. A huge pet peeve of mine is when doctors refer to the meals our kids eat as "feeds". There's also this notion that all of a sudden you don't know what to feed your child, when really they need the same food as an other kid (barring other medical issues/allergies)--its just that they're getting in a different spot. There are some articles about this and other pieces of g-tube etiquette. The basic jyst of it all is that we should treat our children and their meals the same that you would give an oral eater. I couldn't agree with these articles more!
https://www.mealtimenotions.com/GuestOpinions/12-2009-TubefeedingTerminology.htm and
https://www.mealtimenotions.com/GuestOpinions/TurnTubeFeedsintoMealtimes362007.htOnm
Also, which feeding clinic are you in? Kluge is very well known and has a fabulous reputation for their "Encouragement Feeding Clinic". I like their principles a lot more that the other clinics I've read/heard experiences about like KKI, for example. People literally come from all over the world to go to it. I just heard from another parent last night that there's currently a nine month wait list for the intensive inpatient program.
Let us know if you have any other questions!
Also I'd ask your current clinic to go over tactics with keeping what oral skills your DS has. The recommendation is usually to eat oral first and follow by the target volume of food remaining. Though, there are sometimes variations with how often to do this, etc.
And finally! Make sure your clinic shows you how to prime and vent the tube to get the air bubbles out. We've met several people who didn't know anything about this. Eeeeek! Super important!
thank you! we do go to KKI. they have been wonderful because they HAVEN'T pushed a g-tube on us. they have really been great with letting him go at his own pace and tracking him. we've come to this decision as a family so i think it's making the transition so much better. it's nice to make decisions FOR him in regards to this. eating has always been very important for me with him (as with any parent i know). i am all for the blenderized diet especially since he eats such a variety of foods already. hello pureed indian food! lmao
Glad to hear about your good experience! I actually have an old friend that works there, but have been surprised to hear some bad reviews lately. I guess, as with any thing, its all dependent on which specific therapist(s) you work with.
...LOL! We pureed a wheat-free, egg-free, dairy-free birthday cake for and some gluten-free tomato-less pizza for DDs birthday this year. It felt so good to do that! DD does kale chips, "guacamole" and chicken, lamb, etc. We totally live on the edge over here.
i love cooking for him so much that i can't imagine giving it up. and like you said, it's so much healthier to cook for them! i just made him a big batch of food while he's recovering from hip surgery. we pretty much puree what we have for dinner for him so it won't be a big change at all.
you've totally given me an idea now with the kale chips!!
i'm glad you got to come to this decision on your own terms instead of it being forced on you. I can totally relate what a relief it will be not to constantly be counting ounces and calories he manages to consume.
we're still holding off on the tube for now, but I hope if it comes to that we'll be able to dictate when and how also.
We're a tubie and while it isn't a decision to come to lightly, it has been the best thing for our little guy.
We started with an actual g-tube, not a mic-key because I wasn't comfortable with that process. So, we started with the a tube outside of his body and it worked fine. The change in him was almost immediate. He was 7 months old and struggling to maintain 14 pounds. He's gained almost 6 pounds since July 3. He went from not being on the growth chart to the 10th percentile. Most importantly, he's caught up on some of the developmental delays he was starting to demonstrate and his energy level went up dramatically.
We now have a mic-key and it's nicer than the tube, especially now that he's moving around so much. I'm not familiar with the mini-one, but the mic-key that we have is pretty low profile.
There's a website - feedingtubeawareness.org that provides quite a bit of information and their facebook page is fantastic. Lots of tubies/parents of tubies who can offer great advice.
Good luck!