View Full Version : Need some advice...

02-25-2012, 05:18 PM
So recently, Id say the last month or so, every time we feed Caleb ( tube feed) He is visibly uncomfortable and starts coughing and spitting up. At first it was just a tiny bit but latley its a lot and Im getting concerned. My pediatrician just says to watch him and we will make sure he is still gaining weight , his nissan is completly in tact, but I feel like something is wrong. He has stopped eating completly by mouth( all of the sudden one day he was eating great and the next he stopped.) also which from what I hear is pretty normal. He gags when I try to bottle feed him. Is there a reason for him to spit up every time he is fed? Why would he look so uncomfortable ? and if the Nissan is in tact why and how is he able to spit up so much?

02-25-2012, 05:23 PM
also I should add that we just had a swallow study, he is not aspirating, but we were told the formula is pooling at his esophogus because the Nissan is very tight, and that might be why he is gagging when trying to bottle feed, but that doesnt explain tube feeds...

02-25-2012, 05:58 PM
I'm not familiar with tube feedings but to me it just doesn't seem right that his pediatrician said just to watch him and to make sure he's gaining weight. You said he looks uncomfortable and spitting up a lot more. Does Caleb has a gastroenterologist that can check what's going on? I wouldn't just go by what the pediatrician says. The little guy could be in pain. But something just doesn't seem right.

02-25-2012, 06:07 PM
We have never seen a GI , when we had the g tube out in it was by a pediatric surgeon only bc of the trach, he always ate fine.. So never saw a GI. I agree it's not sitting well by me to do nothing.. Our nurse says there's mining we can do but I don't agree . I am going to call a GI Monday morning .

02-27-2012, 08:04 AM
Jessica does it happen as soon as you start to feed him or towards the end? That sounds like what my son experiences when he isn't tolerating his feed for some reason. And is it every feed?

It sounds like he could be refluxing or he is overfull. Jackson's digestive system slows during the day so we have learned he has to have less food in the evenings. Also we check his residuals before every feed to make sure his stomach has emptied out. You could also try slowing his feeding rate down.

Jackson has a partial nissen so he can still burp, spit up and throw up. That also means he can still reflux. Reflux is part of the reason he has the trach so we are very attentive to what is happening when he acts the way you mentioned above.

Call GI, it really doesn't sound right. And your mom gut is telling you the same.

02-27-2012, 08:54 AM
I can't believe that they did such invasive GI procedures simply because of the trach. If there is no real reason for the tube or the nissen, I'd get them taken out or undone. Definitely get a GI consult or second opinion. A trach does not mean that there are GI issues or that there will be issues. While we were certainly heavily pressured to do a gtube by our original hospital/NICU, we refused. Our son was eating and swallow tests were fine. He just needed to be home where he could nurse on demand. Definitely call your team and ask some questions.

02-27-2012, 02:22 PM
Not sure where you are in CT, but I am happy to recommend a GI in the southern half.

I am also highly surprised your son has a nissen but has never seen a GI doc. Ask the pediatric surgeon to recommend someone.

02-27-2012, 06:34 PM
Thanks everyone for all your thoughts..
Our 8 week Hospital stay was a living nightmare to say the least.. I have since transferred all of his care to a different hospital in the state as well as another ENT in NYC. Our care was sub par,confusing, No one really knew what was wrong with Caleb, what he needed or didnt need.. they stopped letting us feed him a bottle even though he passed his swallow studies(he does have reflux ), sprung a g tube and nissan out of no where and the Trach WAS NOT EVEN PLANNED before he went into surgery for the G tube. We found out during surgery when I had to sign a consent. I now know that as his parent as only advocate my voice will be heard and my childs care is my decision not the hospitals. Once I started voicing my opinion after our discharge I was asked not so kindly to please leave the hospital which I did gladly.
So today, I started with the surgeon that put in the Gtube, they seem to think we should increase his dose of Prevacid because it sounds like reflux. My Pediatrician agreed to start there and see if that works but he is reffering us to a GI dr @ yale where we have transferred our care.
It doesnt happen every single time, but lately it is happning more often than not when we Bolus feed.. it doesnt happen ever at night for the continuous feed.
The reason I have a hard time believing it is reflux causing him discomfort is it happens as soon as we start the feed, the only thing that makes sense is that his stomach is too full?

02-27-2012, 08:21 PM
You can check how much is in his stomach before you start a feed. We attach a large syringe into a feeding extension and then hook it into his g-tube like we would if we were feeding him. Sometimes it fills with formula, sometimes nothing. Our GI feels that you should let everything run back into the stomach if you do this since you are also pulling up stomach acid.

Depending the amount of formula we hold off on starting another feed until his stomach has emptied. We also keep a little log to notice trends in his feeding issues.

This is just what we do, our own personal routine that works. Not sure that a doctor would endorse it!

Good luck!

02-28-2012, 01:35 PM
Sofia was born at Yale and most of our docs are there. If you want detailed info, feel free to PM me and we can chat.

02-28-2012, 02:47 PM
I would do a gastric motility test aka barium swallow. This will show if their is delayed emptying. I have severe motility issues. most of my nutrition is tpn. what I do get orally goes through my j-tube. I have a gj-my g is on a drain since it is essentially paralyzed by gastroparesis. I retch & gag if I get food too fast...Good luck!