With the exception of 3-4 ounces of water while sleeping to help avoid dehydration, he has not had a tube feeding since that day. We have made it one full week, and to turn back now would be heartbreaking! The doctor’s office called back on Monday and I did not receive the resistance I expected. He said to continue with small, frequent meals and watch for signs of dehydration and to check his weight weekly. If as of next Monday he has lost weight he will recommend adding some tube feeds.

We are going to take it day by day, but as long as Ryan isn’t losing a ton of weight, remains hydrated, active/energetic, isn’t regressing and continues to ask for and accept food and drink I think I will hold off. I might request blood work to check to be sure all is well there and add a multivitamin if needed, but I know I need to remain strong and (as you said) follow my instincts in this “mission” as long as he is doing well and staying healthy.

We are not going to actually remove the tube for a while, just in case he’d get sick or something and need additional hydration, etc.

Anyway I will try to keep you posted!! Thanks again for all of the wonderful information on this site!

Kristin

Thanks for your comment and for sharing your story. What I most want to say to you is “Follow your instincts!” You know your son best and your gut is going to be more effective than even the most specialized experts out there. Graz was a wonderfully helpful part of Stella’s weaning team and they may be a great source of confidence (so important in weaning) and reassurance and expertise to you as well. Your son has come so far and you have much to be proud of–your efforts have paid off! You will get him the rest of the way there. Hang in there and keep in touch if you can. I hope to hear about your weaning success, and soon! Best wishes!

Many children remain tube dependent after successful healing of their underlying disease.

That is exactly what I have been thinking lately. He has overcome all of the feeding difficulties that he once had. He has been eating pureed foods for some time and can now chew and eat diced foods, as well as cheerios and small crackers. His major difficulty was with drinking…he simply could not drink well. Now he absolutely has the ability to drink and it’s obvious that it has become a “mental” thing for him to expect the tube feeding when he doesn’t feel like eating. He gets excited about food, asks for it, enjoys choosing his foods, enjoys being part of mealtime, and has the ability to eat and to drink now…he had been drinking a little from a bottle but recently learned how to very effectively drink from a straw. With 100% certainty I know he’s ready to be weaned.

So even though I know he can do it, and that we need to aggressively move toward weaning I still worry about making sure that throughout the process he doesn’t get dehydrated or lose weight. He is now 3 years old and just hit 17 pounds, so he’s still small. Yet he’s strong and healthy now, which was not the case just over a year ago.

I have been contemplating contacting the staff at Graz, after hearing that they can do email consultation throughout the weaning process and that US doctors are much more conservative about weaning…

Because he is essentially choosing to get tube fed out of convenience now, I know it will only be more difficult to wean him as he gets older (and smarter!!), so I need to act NOW. This post solidified that for me.

Thank you, Thank you. Kristin, Mother of Ryan ‘06

How I feel for you! I have a 2yr 3mth daughter who has been through very similar things. From birth she ‘failed to thrive’. Wouldn’t breast feed, would hardly take anything from a bottle etc.
Lara was diagnosed with a heart murmur @ 7 weeks which was then fixed surgically. Complication of this was that they paralysed her left vocal cord.( left laryngeal nerve runs v close to surgery site) She was also diagnosed with Laryngomalacia and GERD. So post surgery she wouldn’t eat anything! So we took home a 12 week old projectile vomitting baby with an ng tube and no guidance as to the future!Obviously a lot has happened since then. But in brief we did end up with a gastrostomy @ 5mths as the NG tube just became completely unworkable as she pulled it out almost daily( no matter how I taped it down!)
She still has the gastrostomy but I’m battling to have it removed over the next few months as she can now eat and drink ( after a lot of work- mostly mine). the GERD has also resolved itself. The issue we have is how much she’ll eat and drink to maintain weight gain!

If any of the things I’ve discovered can be of help I’d be delighted to share them with you.
tamara.sanghvi@btinternet.com

My daughter Paige is now 10mths old and has had an NG tube to supplement breastfeeding since she was 10 days old as she does not demand enough from me to ensure that she does not dehydrate and to ensure weight gain. Sadly she wont take a bottle.

She also had a heart condition AVSD which was fixed in January, but her demand for more did not happen as we were told it would. The feeding teams here as you have already pointed out don’t seem too bothered that she has a tube and when asked to help wean her off it suddenly go silent. They are quite happy to point out the things that your doing wrong and point out that the tube should have only been in for six weeks, but no help you with a weaning programme.

I can not tell you how many days I’ve been depressed and in tears over the whole thing. We were home (NZ) recently to introduce Paige to the family and the number of times we had to explain why we had it and the number of times a certain person in the family would say ‘I’ll do it and we’ll have this tube out before you know it’, was so upsetting.

I’ve been looking for a new vocation and as I can’t stand to see others suffering as I’ve suffered so I think I have just found it.

Amber, thank you so much for not giving up and for sharing this info. I’ll give it a go and let you know how we get on.

Big hug…. Sarah

My daughter is 7m and currently has a NG Tube. She does not like to eat! She has a heart defect that is being fixed friday.

Do you have any tips on how to get my little on to eat atleast 1 oz. she only takes about 1/2 oz out of 4

Thank you

My daughter has a NG Tube. She does the exact same thing with liquids. Does your son have his G tube still? If not how did he overcome it?

My daughter has a heart defect due to why she does not eat.

Thanks all

Hugs.. Amy

http://tubefedkids.ning.com/

Hopefully, you can link up the two websites to enhance information sharing.