Hi, I'm a mom to 22 month old (28weekers) bbb triplets who is in need of some help. One of my boys (Jack) has a grade IV IVH with hydrocephalus. He currently has 2 shunts and has suffered many shunt/other infections in his young life. He also suffers from reflux and has delayed gastric emptying. He has extensive medical history in regards to the shunts but I am trying to keep this brief. He hasn't been "officially" diagnosed with CP yet but it is obvious that he does have impairment mostly on his left side. He seems to be doing well cognitively - though he does seem to have sufficient motor impairment. He cannot walk or stand. He can sit up and support himself with his hands for short periods but he tires out easily from that. He only recently rolls around on the floor so we are hopeful. I just wanted to give some background before I got to the root of the problem. Jack is going to require a feeding tube due to failure to thrive and an oral motor deficiency. He is still on formula and high calorie baby food. He cannot handle textured food and pretty much refuses any pureed foods that I have tried to prepare for him. I am working with a speech/feeding therapist in my home and he sees a neuro-developmental pediatrician at a well respected feeding and swallowing center near my home. SO, FINALLY, HERE IS MY QUESTION !! His neuro-developmental pediatrican is recommending a g-j tube for Jack over a regular g-tube. The surgeon (who has only seen my son once)wants to go for the regular g-tube. I have heard the pros and cons of each but I wanted to know if anyone out there has had any experience with the g-j tube. I am so afraid to get either because I think it might end up causing more harm than good. The g-j tube sounds good on paper but then why can't I find anyone who even knows of it ??? If anyone has any input I would really appreciate hearing from you. His surgery is scheduled for 9/10 so me and my husband really need to make a decision on this. Any input would be appreciated !!!!

First and foremose, I am fairly knowledgable about medical stuff (nursing student with tons of experience), but I also called my mom who is an RN to confirm my info would be accurate prior to posting this...

My daughter had first an NGJ tube. One through her nose that went to her jejunum, to aid in her reflux problems (which ended up damaging her throat enough that she needed a tracheotomy). After her reflux was offically diagnosed, she went for a nissen (fundoplication), which resulted in having a g tube. Either your g tube or gj tube will be very easy to care for, and will greatly impact your sons ability to grow! Have they addressed doing a fundoplication on him to prevent the reflux?

My mom and I agree with the gastric emptying problems he is having, the gj tube would greatly impact him. With the tube being placed lower, he won't have the opportunity for food to back up out of the jejunum. The small intestine will digest all the nutrients of what you put into the tube, as there will be no major breakdown of pieces necessary (digestion which occurs in the stomach). The GJ tube could be the perfect solution for him, and doesn't differ from the g tube aside from placement.

On a nutrition note, if your kids are older than 1 year, have you thought about Pediasure? My kids were on 30 cal an ounce formula, and when they hit 1 year, the doctor suggested Pediasure. For example, whole milk has 20 cal an ounce, where Pediasure has 30 cal an ounce. When every calorie matters, it is worth a thought! We gave my daughter her Pediasure throught the G tube. your insurance company may provide you with the necessary formula to give him for tube feedings, and there are alternatives to Pediasure if the insurance company won't cover it.

Please feel free to email me if you have more questions! My best wishes and thoughts are with you at this time. It is hard, but the end result will help him be more comfortable and get the nutrition he needs! Good luck!

~Melissa mom to Sarah, Ryan, & Emma. Post 26 weekers weighing 1lb 7 oz each. Visit our web sites at: http://www.tracheostomy.com/trachkids/kids17/emma.htm , http://www.gkmom.org

"My mom and I agree with the gastric emptying problems he is having, the gj tube would greatly impact him. With the tube being placed lower, he won't have the opportunity for food to back up out of the jejunum. The small intestine will digest all the nutrients of what you put into the tube, as there will be no major breakdown of pieces necessary (digestion which occurs in the stomach). The GJ tube could be the perfect solution for him, and doesn't differ from the g tube aside from placement."

I respectfully disagree with some of the above quoted advice. I would absolutely get the advice of a GI dr before you made the decision. The developmental ped and the surgeon disagree, so obviously there is no one absolute best answer based on their limited knowledge. A peds GI dr will have tons of experience and valuable information to help determine the best way to go. My son (who has short gut and other major GI problems) had a g-tube for a year. I know several patients through our GI practice who have j-tubes for reasons other than the ones you have talked about. Even with severe reflux (that required a nissen fundoplication and delayed gastric emptying and short gut) my son did well with a g-tube. He had a continuous feed pump (because of severe malabsorption problems with short-gut), but most babies/kids can handle bolus feeds well, and therefore eliminate the need for a pump. There are downsides to bypassing the stomach when using a j-tube, that would be best discussed with a GI dr. Good luck with your decision

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Have you thought about using an NG tube for short term use since you said you are working with feeding specalist to over come his oral motor issues?

My dd has an NG tube that I place myself nightly. Once she reaches her target weight we will stop using the tube with hopes that she can maintain, and continue to gain on her own without a G-tube.

best of luck

Just wondering if you have made a decision. I wouldn't be worried about doing more harm than good in either case. I know how intimidating it can be, at least it was for me. Even after my son had 3 major surgeries in a row (before he was 2 weeks old), had a cholostomy, and critically ill taking it hour by hour, for some reason a g-tube seemed overwhelming to me. The g-tube my son had was a lifesaver for him. It really helped his digestive sysytem to function more normally as opposed to a j-tube that bypasses part of the process. Hopefully you can have a chance to talk to a GI dr who can help you with the decision.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Just wondering what you decided to do ?
I have lots of g-tube experience and have talked to several moms quite a bit about j-tubes if you need any support/help. I hope the surgery went well.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild