5yo is getting a g-tube

[christianarmywife]

Would love to hear positive stories, advice, anything about g-tubes. I don’t know anybody with a child like mine. Lifelong history of not eating enough, pickiness, failure to thrive. They finally concluded that we’ve done all the testing and trialing we can, and that she needs a g-tube to grow properly and help her body get used to a higher calorie intake and increase her appetite. The hope is that she’ll need it 1-2 years, then can wean off it.

She’s scared, my husband is a nervous wreck. I’m pretty relieved actually. It’s been so hard, I just want to see her healthy so I’m grateful that I have a way to help her now, even if we never found a reason for her poor appetite. I am a little nervous too though, this is a whole new world for us. I don’t have anyone in my life who has been through anything remotely like this.

 

[holidystm]

@christianarmywife I had a feeding tube for many, many years (born with a swallowing disorder). It’s a game changer. Just make sure it doesn’t snag on her clothes. They have cute abdominal binders and pouches to keep it safe.

 

[theesotericvoice]

@christianarmywife My son doesn’t have a G-tube but does need special clothing . Just FYI Target sells g-tube friendly clothing in their adaptive kids line, it’s online only tho.

 

[katrina2017]

@theesotericvoice And Kohls!

 

[percyjeffries80]

@christianarmywife G-tubes are honestly very easy. The biggest problem I ever had with the G-tube for the kiddo I looked after was the cat used to try and chew the tubing from the feed bag to get at the milky formula!! Even changing the tube (after the first change which the doc/RN will do) is super easy; make sure you have a spare or two and feel comfortable replacing it (not hard at all once you’ve seen it done). Honestly, not spending hours trying to get kiddo to eat/feeding kiddo will be a game changer and a weight off you. If they need some fluids because of being sick you can just triiiickle it in and rehydrate them, and meds are easy too. For kiddo, there are dolls who have ‘buttons’ or a crafty friend can ‘sew’ one onto a soft bellied doll so she has a friend just like her. https://thebutterflypig.com/product/doll-sized-pluggable-g-tube-button/ looks like the sell the ‘buttons’ for dolls. You’ve got this!!

 

[christianarmywife]

@percyjeffries80 I love your idea about the doll! That would be a great gift after her surgery. And hydrating her when she’s sick… wow that will be so helpful. Illness is so tough on her, it’s the biggest battle to get her to eat and drink.

I have a feeling we are all going to appreciate the g-tube once she has it. It will be a lot of stress gone, and I will be so excited to see her gain some weight and muscle.

 

[katrina2017]

@percyjeffries80 Lol we have a house full of cats and none have ever succeeded so they have all just given up and don't even bother with the tubes anymore.

 

[percyjeffries80]

@katrina2017 This was a cat who got one taste of vanilla pediasure and for some reason LOVED it! Devious little creature but the source of much amusement!! Kiddo thought it was hilarious to watch me chase the cat away from the tubing so they would pull it off their lap and onto the floor if I wasn’t very careful to loop it up just so and out of the way. I’m sure most cats and kids aren’t nearly so persistent.

 

[katrina2017]

@percyjeffries80 Lol Happy Cake

 

[christianarmywife]

@michael1958 Thank you! It is a gtube. And she does still eat by mouth, just not enough, and progress with feeding therapy is soooo slow (although it is progress).

 

[pye]

@christianarmywife Girls have/had one. One for just a short time, the other has had it for 6 years and will forever and it’s like it’s just a part of her. We don’t even notice it anymore, super easy

 

[phytoscience1]

@christianarmywife I work with a group of people who have a certain disease, and the majority of them end up with gtubes. The families try so hard not to get one, and after they get it they all wish they had done it when it was first suggested because it’s so helpful. I hope this makes life much easier for your fam! The hospital should have a Child Life Specialist or something with a similar name who can show your daughter pictures of what will happen on surgery day to calm her fears

 

[mrsbambij]

@christianarmywife If possible can you go elaborate about when/how feeding problems started and what you’ve tried to fix it? I have a feeling this will be my kiddo.

 

[mrsbambij]

@christianarmywife That’s a lot. I’m sorry you are going through this. Hopefully the gtube gives you peace of mind that your girl is getting what she needs. How are meal times in your house?

My kiddo had a nursing aversion and we did a program to fix it, but they mentioned that when untreated, it almost always continues onto solids. Still though, mine doesn’t eat much food at all and his weight gain has stagnated. I don’t pressure him to eat at all because I saw how that made the nursing aversion infinitely worse, but some days I just want to pull my hair out from stress.

 

[wanderingsheep]

@christianarmywife That's terrible! I'm so sorry. How traumatic. They biopsied for celiac? My daughter has celiac and I often wonder if there are other foods that trigger different autoimmune responses, and we haven't found it yet. There must be, even if rare.

 

[christianarmywife]

@wanderingsheep They took some tissue biopsies when they did the upper endoscopy. Her GI said he doesn’t have any reason to suspect an allergy, and conceded that a food intolerance could be possible but there’s no way to diagnose except an elimination diet… which won’t work without starving her, she eats so little. But maybe with a g-tube we could try something like that.

 

[spread_the_gospel_online]

@christianarmywife Sounds like my kiddo too but we just aren’t at g tube yet. We’re on appetite stimulant. Some people just don’t eat. It’s hard to explain to others, and I think that’s the worst part. Can’t tell ya how many times my mom has said I gave my child an eating disorder, or he just doesn’t like the food I cook, etc. but more than anything, it’s just who they are right now! I have hope they can change with time to not need supplemental nutrition.

 

[christianarmywife]

@spread_the_gospel_online Yes the reactions of others can be so frustrating. My MIL once told me “maybe you’ll do things different with the second kid” as if we caused this somehow through poor parenting.

I hope the appetite stimulant works for you! We had success with it initially and I know it does wonders for a lot of kids.

 

[defd2000]

@christianarmywife Secondhand info, but- a good friend of mine has a wonderful kiddo with a g-tube. She says she doesn't understand how people give medicine to their children without it, because it's so easy!

 

[katrina2017]

@defd2000 Absolutely hands down a huge bonus for the gtube.