I have been lurking for quite some time now and realize that perhaps this site might be best to help with my questions.
My son, Christian is nearly 11months old, reflux since birth and hypersensitive gag with oral motor coordination issues (tongue doesn't know what to do with foods), and weak suck. He does/has not aspirated.
He is weighing in now at 16lbs 3oz (severe FTT) and 28inches. He stopped growing at 6 months and a G-tube was put in January 4th this year.
My questions are
1. How do you establish a feeding pattern/schedule?
2. How do you deal with granulation tissue - bleeding?
3. How much leakage is normal?
4. What is a realistic goal caloric wise (right now we are figuring 98cal/kg)
5. What are realistic goals for removal of the g-tube?
6. We are looking forward to the button in a month or so - is it really alot better than the peg tube?
Thank you. I could really use the help and support.
Laura

Hi and welcome to the board. I will try and answer your questions from my own experiences.
My questions are
1. How do you establish a feeding pattern/schedule? Now is your gi doc involved? My son feeding schedules were set up by our doc for both of my boys. My one son was fed continous over night and the other had bolous feeds throughout the day and would be fed at night to make up if he didnt get in all feeds throughout the day.
2. How do you deal with granulation tissue - bleeding? Both of my sons had granulation tissue in the begining. Our doc used silver nitrate on their stomas to remove their tissue. My one son had to have his site cleaned up in the OR. The other thing we found that helped was correct fitting buttons.
3. How much leakage is normal? With the straight tube my son leaked all the time. We had to keep sponges on him so that his shirt was not always wet.
4. What is a realistic goal caloric wise (right now we are figuring 98cal/kg) Again our gi doc and a dietian worked all this out for us. They told us what formula to use and how that it should mixed so that it could meet our kids needs.
5. What are realistic goals for removal of the g-tube? My one son has had his feeding tube in now for over 5years and it wont be removed any time soon. My other son had his tube in for 3years when it was finally removed. His was removed when he was able to keep himself sustained nutrionally by eating enough orally. The docs didnt just take it out he was weaned slowly to make sure that all of his needs were met. He has been tube free now for over 2years and doing well.
6. We are looking forward to the button in a month or so - is it really alot better than the peg tube? I found the button to be much easier to deal with than the straight tube. My sons both did much better with the button. I found once we had the right fit for each boy that they had less problems with granulation tissue or leakage.

I do hope that this helps and if not please ask again and I will answer the best that I can. I do wish you luck and hope that the button goes smoother for you.


Melanie

Hi Laura, and welcome! Hope I can help with some of your questions. My son got a G tube last summer.

1. How do you establish a feeding pattern/schedule? Since Daniel can handle bolus feeds, we tube feed him when he would normally eat. He gets six ounces at approximately 8, 11, 2, and 5, and then eight ounces at bedtime.

2. How do you deal with granulation tissue - bleeding? Thank goodness, D had never had a problem with this.

3. How much leakage is normal? Daniel's tube leaked a minimal amount the first couple of weeks, but once it was changed to a button, he didn't leak at all. Again, I'm very thankful for this.

4. What is a realistic goal caloric wise (right now we are figuring 98cal/kg) Daniel, 29 months old and close to 28 pounds, gets 1,000 calories a day. He takes Nutrem Jr (a toddler formula) which is 30 cals/oz. When he's feeling up to it, we also give him an extra ounce or two of water after a meal to keep him better hydrated. A dietician I spoke to recently said D should really be getting about 1,300 cals/day, but he's growing on this amount and I don't want to rock the boat.

5. What are realistic goals for removal of the g-tube? Our GI is pretty conservative about this. He'll want D to not use his tube for six to 12 months before removing it. That way it's available in case he gets sick and needs extra fluids he won't take by mouth. After struggling to feed D since day one, I'm all for the conservative approach.

6. We are looking forward to the button in a month or so - is it really alot better than the peg tube? I think the button is great compared to the tube. The button always pulled, and D got a sore spot along the top edge of the stoma if I tucked the tube in his diaper or a sore spot along the bottom edge if I put it over his shoulder. His site was perfectly clean after getting the button. He has a Genie button. I'm not sure of the pros and cons of each one. D seems to have the only Genie around here, but it works great for us.

just wanted to say welcome to the board. i'm also new here. Eliana was just diagnosed with FTT last week. she is 16mos, 16lbs 11oz and 28 1/2 inches. sorry I have no experience with what you are dealing with. i'm sure some ladies here will be able to help you. they are VERY helpful.










:hello2:

Thank you for your responses. We have a GI and a nutritionist that is helping us - but they keep forgetting that he has oral motor difficulty and often times refuses his bottles.
Right now our plan is supposed to be 4-4oz bottles during the day, solids served at meals (goal 5-10oz), continuous at night 45ml/8hr total 12oz.
There are so many days he won't take the bottles, refuses solids. I can't seem to get a schedule or pattern down. He is taking 3-5oz bottles and the continuous at night - but vomitting.
So basically his goal is 800 calories.

Hi Laura. I wanted to welcome you to this site. I've chatted with you on another site too. I'd thought about mentioning this site to you since I know Christian is fairly new to tube feeding and I know a lot of moms on here have tube fed kiddos. I know you'll get lots of help and support on this board too.

I was wondering if Christian has had any delayed gastric emptying studies done yet? The reason that I ask this is because the coment you made about his vomiting. Alot of times when the child starts to get older the vomiting is not always from the reflux but from the stomach not emtpying quick enough.

My son has delayed gastric emptying and has alot of pain and retching when his stomach gets to full. He is on motility meds at this time to help with this.

Does your doc know that he vomits and if so what are his thoughts. I would mention to them about the dge. That is my 2cents. I do wish you luck.


Melanie

Melanie thank you for your comments. When Christian was just 11 days old we thought perhaps he has pyloric stenosis - all the testing showed that was not the case, however there were pylorospasms causing dge. He is currently taking Prevacid 15mg for the reflux, 0.7ml (3x daily) for the dge. So we do have that covered.
We did just find out that he has a severe ear infection, sinus infection (mind you weeks after his cold appeared to have ended). I think the post nasal drip and pain has been causing the vomitting. Sucks that it has taken nearly 2 weeks to figure it out. Sometimes doctors are so thick and don't want to check it all out. Call the ped they say call the gi and vice versa. After 3 days of shots he is back to taking his 5.5oz bottles 3 times a day and eating solids again. Although I have slowed his feeds overnight - there has been no vomitting and we plan to increase them back to normal after a few days.
Thanks for all your insight.