Posted By Posting
Jan 28, 2012
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
jedds mommy
I know that you guys are gtube free and was wondering what criteria was needed to do that? Im in a battle more with myself than anything but i feel like we get to a point where it can go and then i think thank god we have it. we are still using it on a daily basis for boluses which are keeping her in a good weight pattern. I feel like leave it alone if its working but wondering if we stopped using it what would happen. as i say this we are going on 3 days that she isnt drinking by mouth except for about 10 ozs over those 3 days so if i wasnt bolusing(is that a word?:) we would be at iv hydration. We are also on a nasty drug cocktail (i tasted it oh my gross) that i havent figured out how to get down the hatch any insight would be appreciated thanks
Jan 28, 2012
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Real fast, I'll be back later, it's bedtime here. :-)

When we were deciding to not use to tube in order to pull it as soon as the OK was given, we were instructed NOT to use it at all. Even if that meant getting the flu, puking our guts out, and needing to go to the ER for fluids. If that happened I was even instructed to tell the ER staff his G tube was off limits for hydration. We were to treat him as if he had no tube at all even though he did indeed have one...LOL

Night feeds were the last to go for us, and then we worked on meds. I watered them down in order to get him to take them. He just learned that he needed to take them in order to feel better.

As far as bolusing, if you are going to do some, I'd do them in the middle of the night if you can and do only oral during the day. In are circumstance, if Jedd "knew" we were going to bolus him, he would have just refused to drink/eat. If you can "hide" it at night and see how you do, I'd do that if you can.

the general "rule" for pulling a tube is 6 months with no tube usage and gaining correct weight, they normally like that 6 months to include a cold and flu season too. I was actually kinda freaked out about not having Jedd's so we waited almost a year until we pulled it.

Even then, we did it at the end of a summer and I was scared to death the entire winter. Life was soo scary without a tube!! I don't know how "normal" Mothers do it!! Even now at 5 years old, there are some days I wish it was still there just as a comfort safety net. LOL I know it sounds funny to outsiders, but I know you will understand.

Jan 31, 2012
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
thanks for the info. I just found a website for tube fed kids. gonna get some feedback from there also. My biggest concern is that because she had the nissan she cant throw up and we use the tube to vent her. She has swallowing issues and still chokes from time to time. As far as the boluses we do a 6-8oz at school because she doesnt drink as much as i would like and on gym days we give her a gatorade boost. It is easier to get the liqiud into her via tube because she needs thickened liquids and im sure she gets fuller faster. I think i need to be patient. one of her meds is supposed to have a side effect of appetite suppression but this kid is like a willy crater kid and eats constantly thank god. We have come a long way with weight gain and she is seven and 41lbs. thanks for ur input its nice to know there are other moms who deal with the same thing
Jan 31, 2012
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
website not so good
do you know of any forums for parents of tube kids. im not having any luck
Jan 31, 2012
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
There is a site where I help moderate the feeding issues and aversion forum. It's found at:

www.parent-2-parent.com

You can also use my email to find me on FB with onion95@gmail.com

I've used P2P since Jedd was about 6 months old. There are tons of tube feeders there, probably hundreds. Also, there are some pretty active tube feeding "fan pages" on FB with alot of traffic for Q and A.

Check with your
doctor first!