Posted By Posting
Dec 30, 2008
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
new, need advice
My DD was born Nov 13 with gastroschisis. She had her closure surgery when she was 6 days old, then ended up developing chylothorax (lymphatic fluid leaking into the chest cavity putting pressure on the lungs, causing respiratory distress, and requiring feeding with little to no long-chain fats). They have started and stopped trophic feeds more times than I can count. She had another surgery to fix a suspected blockage on Dec 20. They re-started feeds again the other day, but she has been throwing up at least 4-5 times a day (usually more like 10), so they stopped again. The thing is, the vomiting doesn't seem to be related to her feeds at all. She was getting fed every 3 hours (just 3 mL), and didn't throw up during or after feeds, usually just before feeds, and the vomit is mainly mucous, with a slight green tint. She had an upper GI study on the 19th to check for the blockage they thought she had, and the nurse who took her said that she could see that DD was refluxing during the study. DD is on Zantac (in her TPN) and also Reglan and Protonix, but none of them seem to be helping much. Is reflux a reason for them not to feed her? She is pooping regularly, and like I said, the vomiting doesn't seem to be directly related to eating. She has never been fed more than 6 mL at one time. Is there something else that she could be given that might be more beneficial than what she's already on?
Dec 30, 2008
jedd'smommy
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
Is there a reason why they want to do G/J feeds while doing TPN??? I know form others they normally like to do about 5ml per hour just to keep the GI tract moving. Could you back off for a few days and see if that helps?? Maybe run pedialyte and see if that helps???? I know quite a few TPNers on another board if you want the address let me know.

Sorry I wasn't more help. :-( I don't think there are any TPNers here at Pager. There are a few G feeders though.

Dec 31, 2008
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
She's on TPN just because of not eating. With the gastroschisis, they had to wait for her gut to start working before they could feed her, then she ended up w/ the chylothorax and the treatment for that is nothing by mouth until the drainage stops, then that stopped and they tried feeds but she vomited bile, so they thought she had a blockage, did surgery, but didn't find anything but a bunch of matted bowel and maybe a kink. Then when they started feeds again this time, she's still throwing up, so they stopped again, but I don't think she's throwing up because her gut isn't working, I think it's because she has reflux. They started the Reglan on Saturday, and the Protonix on Monday, and yesterday she threw up much less, and it was just clear spit. She won't stay on the TPN, as soon as she can feed and get up to full feeds, she'll come off of it. I'm just wondering why they're using her vomiting as an excuse not to feed her, when it's not because her gut's not working... and wondering if we need to give it more time on the meds to work, or if she'll just always throw up at least a little?
Dec 31, 2008
jedd'smommy
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
HHHMMMM have you had any testing on the GI tract to ensure it is working properly??? Like a manometry testing. That can measure the contractions in the GI tract is working right.

And yes, the meds may need a bit more time to take full effect. That's the part that stinks.

Dec 31, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I agree with Jessica. Maybe an emptying study would be worth looking into? It can take some time for the medicines to work. If there was some improvement already then perhaps the next feed will go better. If not then maybe it is time to look into further testing...

What GI related testing have they done?
Dec 31, 2008
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
They did an upper GI contrast study with a small bowel follow-through, about 2 weeks ago. The nurse who went with for the study said that she could see DD refluxing in the films. The surgeon was in this morning, they are re-starting feeds, this time doing continuous feeds starting at 3 mL/hour (before it was 3 ml every 3 hours). This time though, they are feeding her through an NG tube that goes through her stomach and into the beginning of the small intestine. He said they think her upper GI tract and stomach are just immature and not ready for feeds yet, so they will bypass that for now to give those time to work right. He said it's probably a combination of that and the reflux that is causing her issues. I don't really understand why her system wouldn't be mature, because she was full-term, and her intestines are working right, and they were what was wrong when she was born... but from my experience thus far with these doctors, they will probably decide in 4 or 5 days that it IS just reflux and they were wrong... It took that long of me telling them she needed another reflux med before they started giving her the Protonix, and it seems like it is actually helping...
Dec 31, 2008
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
The upper GI they did essentially was for the same purpose as an emptying study. I am going to tell them that I want them to do a manometry study to prove to me that the NG tube needs to be into her intestine and not her stomach, and I am going to ask why she isn't seeing a GI doctor... She is throwing up still, even though the food they're giving her isn't going into her stomach at all, so obviously her vomiting isn't to do with eating at all.
Dec 31, 2008
jedd'smommy
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
Go Get Em Momma!!!
They need to answer your Questions and with all that is goin on you need to get seen by a peds GI ASAP....JMHO...LOL

An UGI really wont' tell you if the stomach empties properly A GES (gastric emptying scan) will do that. BTW though, a GES is not that reliable. I'd wait it out for a Manometry test. The one you will want is called an Antro-Duodinal Manametry test. It will check the upper GI tract throught he small intestines. They are EXTRMEMLY reliable. They are THE gold standard for motiily studies.

WHAT is she throwing up?????

Is it still bile (green yellow red brown) or is the color of the formula they are pumping into her NG through the G site.

IF it looks liek formula maybe have them send her down to IR (intervential Radiology) or X-Ray to have the tube placement checked. Just to ensure tha the tube is in properly.

If that comes back normal then I would say you REALLY need to get in to see a GI who specializes in Motitily studies. It could be that her J part of the intestines is not moving properly. That will cause the formula to back up in to the G and then eventually reflux up and out in the form of vomitus.

BTW I'm not a nurse or a DR....I've just BTDT.....Never on TPN but in hindsight we should have gone the GJ route instead. My foolish pride kept me from allowing our GREAT GI to do do it even though he wanted to...:-(

I felt like doing a GJ would be admitting defeat....and DH and I alwasy said no....*sniff sniff* I KNOW better now....

One of the things I would change in our journey...hindsight being 20/20 and all....

Let us know how things go tonight. Oh and Happy New Year....

Jan 01, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
She is throwing up spit, essentially. Just mucousy looking stuff, mostly clear with a slight yellow tint. 2 weeks ago when they thought she had a bowel obstruction, she had been throwing up dark green. And she's had an NG tube that they've aspirated for most of the time she's been in the NICU so far, so I've gotten very well acquainted with the different colors! We had to wait for it to stop being green before she could be fed. Now that they are transpylorically feeding her, she is still just throwing up the clear mucous, so it isn't coming back up from her intestine. I don't know a whole lot about the contrast study she had, I just know they called it an UGI, they gave her barium in a bottle and then took a zillion x-rays to watch it move through. They saw it go to her stomach and start to go through, but then it stopped and even after 6 hours still hadn't moved. The nurse who accompanied her for the study said that she could see her refluxing in the study, and the fact that the barium moved out of the stomach but then stopped is what led them to believe she had an obstruction. Because of her gastroschisis, she is prone to having slow intestinal motility and slow stomach emptying, which is what usually leads to difficulties establishing feeds. But, she is pooping now with pretty much every diaper change, so the intestinal motility is obviously not an issue anymore. I'm not sure if the stomach emptying is, because they've never let her have enough food in her stomach to see what happens. The surgeon is using the excuse that they think her upper GI tract (like the esophagus/LES) is immature to justify the transpyloric feeding, but really there's no reason I can see why it would be, because she was full term. So I was thinking they should do an esophageal manometry test, to prove to me that the transpyloric feeding is really necessary... I think before doing the a-d manometry I'd like her to be fed normally, like a real amount and into her stomach, to show if she actually has stomach emptying problems...
Jan 01, 2009
jedd'smommy
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
HHHMMMM I wonder if she has a Malrotation in her intestines. That would cause the issues you are seeing as well. There is another parent at PAGER who has had this. A Malrotation is where the intestines are twisted tight. That causes a blockage which in turn would cause the issues you are having......

Not sure why they want to do esophageal manometry if she swallowed fine for the UGI.....You could have them do a EDG (esophageal scope) in the O.R. and they could look at he LES there....that could give them some idea as to what things look like. They also take biopsies. Those can tell you if you are dealing with GERD or if it is another issue that mimics GERD like the EOS disorders.....

What state are you in???? Or which NICU at what hospital??

Jan 01, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
She does have intestinal malrotation, because she had gastroschisis. Her intestines were on the outside, and when they put them back in, they can't put them the way they normally go. At first, they just put them in and close up the hole. Then when they did the surgery for the suspected blockage, they took all the intestine back out and looked it over. It was all matted together still, with a lot of adhesions, and it was slightly kinked, so they worked it apart and un-kinked it. Now she has all of her small intestine on her right side, and all of her large intestine on the left. We are in Colorado, at Denver Children's. We've been here since she was born, so 7 weeks now, and I have to say, it's getting old... which is why I want them to prove to me that her throwing up isn't just GERD, because that's not a reason to not feed her, or keep us in the hospital. She did throw up some of the barium when she was drinking it for the UGI, but it was also her first time drinking anything from a bottle. The surgeons are supposed to be coming by this morning, and I plan to tell them that they need to rule out GERD as the reason for her throwing up, before they assume anything about her GI tract maturity...
Jan 01, 2009
jedd'smommy
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
That sounds like a GREAT plan. Keep up posted. Man I am sure you are soo tired of being there. I do know lots of TPNers who do it at home, so that is possible.

thank you for explain some things to me I hadn't thought of the intestines being on the outside when you said it earlier.

You know, someone either here or at P2P (another reflux site) had an UGI come back normal and then they insisted on having the surgeon go in and take a look. When they did, there was a kink. The surgeon literally put his hands of every single inch of the intestines and found the kink.

I will be praying for you all that's for sure.

Jan 01, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
Well, today the attending surgeon came by, and he agrees with me that it is most likely reflux/GERD. When I mentioned the projectile vomiting, he mentioned pyloric stenosis, but then said since her vomit is bilious, he didn't think it could be that. They are going to do another UGI though, to confirm the GERD and rule out other things, probably tomorrow. They are continuing the transpyloric feedings through the NG tube for now, half breastmilk/half Pregestimil formula, just to get her to gain some weight, and then hopefully in the next couple of days we can try to start bottle feeding her (with the tube still in place, just in case). They would just continue to feed her transpylorically with a GERD diagnosis, but I don't think it makes sense... she's throwing up anyway, whether or not she has food in her stomach, so she might as well get to eat from a bottle or breastfeed (or at least be given a chance), as long as she can eat and still grow, despite the throwing up. I just want them to let her try before they give up on that possibility... She should hopefully be off the TPN in the next couple of days, too, because they are doubling her feeds every 8 hours, so she went from 3 mL/hr to 5 now, and tonight at 8 it will go to 10, and from there it will double to full feeds!
Jan 01, 2009
jedd'smommy
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
If she's not tolerating the feeds I wonder why they continue doing them.....I always had permission to slow Jedd's down when ever I felt necessary so that he could be more comfortable.

Can they do an Impendance Probe or a PH Probe to see about he reflux??? If you had to choose an Impemdance would be better to do. It can tell the difference between acid and non acid reflux. That way it can tell you if she is vomiting due to acid bothering her or if it is vomiting due to being over full from a motility issue.

An UGI *can* show reflux but it is the not THE test used to tell if a child has reflux. It is better to go ahead and do a Probe of some kind so that you can get a 24 hour picture of the issues at hand.

They are pretty simple and can give you some good answers as far as how the reflux bothering her.

I completely agree with you on the bottle feeding though. IF she *can* do it there is no reason not to do it so long as there is no aspiration risk.

It sounds like some good communication is going on back and forth between you and your DH and the DRs so that is wonderful.

I hope the feeds go well tomorrow, jumping that fast would really scare me...LOL

Jan 02, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
So they slowed down on the feed advances, just increasing by 2 mL every 8 hours. So right now she's at 9 mL/hr. And the UGI will be tomorrow morning. It's not that she's not tolerating the feeds; since they're feeding her right into her intestine and she's still pooping a bunch, and her belly isn't bloating, they're taking that to show that she is tolerating them well. Her stomach is empty other than secretions and stomach acid, and that is what she is throwing up for the most part. We talked about a pH Probe, but since she has that feeding tube down, it's not really an option right now. And it is important to keep the feeding tube down so she can start to grow and get off the TPN, because she's starting to show signs of liver damage and NEEDS to get off the TPN soon. I think the reason they want to do the UGI again (with a small bowel follow-through) is to rule out that anything else might be going on, like the pyloric stenosis. They wouldn't do another UGI just for the sake of seeing if she has reflux, because the last UGI already showed that... they just want to make sure that there's nothing else going on that could be causing this. The meds she was on (Reglan and Protonix) seemed to be working, but now she's not on either of those anymore, just the Zantac, and she's throwing up a ton again. Her nurse thinks that it was the Reglan helping her not throw up though, and I don't think it's worth it to have her on Reglan with the side effects.
Jan 02, 2009
jedd'smommy
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
What kind of feeding tube does she have....are they feeding her transpylorically through an NJ or ND tube or is it a G tube.....?? If you really want the probe done you could see if they could just do TPN full for the 24 hours that the probe is in if she doesn't have the G tube.

We did Reglan with great success but Jedd was an irritable monster while on it. I know some kids who Reglan is their miracle drug though. I wish we could have stayed on it, he did soo well. I could drain him gastrically and boy was there a difference in his gastric residual after begin given his dose of Reglan.

DUH, I just read your post again and answered my own question. The tube must be an NJ or ND tube. Have they talked about putting in a G tube and threading a GJ into it....

My one word of warning would be do NOT let them talk you into a Nissen. IF there is already a suspected motility issue present a Nissen will very much compound the problem. I would exhaust all medical intervention prior to doing a Nissen. JMHO here.....we did with Jedd and it was the BEST decision we made.

I know some families that were told there child would NOT be allowed to go home from the NICU unless they consented to a Nissen and they really regret it later. At that time they made a quick decision because, well, who wouldn't want to take their child home after spending months in the NICU if that was all that was holding them back...KWIM

I am really sorry to here her liver is starting to show problems. I know some kids at P2P that have been on TPN for years and have been able to avoid that so far. Each child's body react differently though.

If they can do slow NG or ND feedings and keep enough of it down to grow, I'd do that. A plus about a GJ would be that you can drain the G port and feed into the J port which in essence would solve your issues partly. You can do so with a Farrel Valve bag. They work pretty well. The Farrel bad is hung along with the feeding bag. It can be tricky as to how to hang them and to get it just right....but once you do, it's great.

Let us know how it goes tomorrow. Will def. be thinking of you all.

Jan 03, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
So I can say for sure she doesn't have pyloric stenosis. We went down with her for the UGI and we could see the barium go from her intestine back into her stomach, and then we could see the reflux too. We're still waiting on "official" results. I definitely won't let them do a Nissen unless there is absolutely no other choice. And I'm not big on the idea of a G-tube either, especially since she's never been given a chance to eat normally. I would really like to have them try some different meds, and that is what I plan to push for if they can't give an answer beyond GERD. The Zantac is obviously not working. If they don't have any answers besides that she just has GERD though, I want them to put her on different meds and let her eat normally.
Jan 03, 2009
jedd'smommy
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
Ya know if she will eat orally I'd let her so long as she is not having aspiration issues. I wonder why they are soo against letting her try.....

I agree, if she is gonna puke on oral feeds G feeds won't do any good either....so long as she eats enough to gain slowly. KWIM.

Have they tried any PPIs yet??? Those would be much stronger than the Zantac. A Lot of kids need something stronger. Jedd did. We had success with Prilosec.

Jan 03, 2009
raeanneb
DS Noah, 5/14/06
DD Faith, 11/13/08, gastroschisis, bilateral chylothorax, reflux
For now they just want her to gain some weight, since she's only gained about 12-14 oz since she was born (7 weeks ago), so that's why they want to to the transpyloric feeds for now. The doctor came up shortly after we got back from the UGI and said they still don't have any other answers beyond GERD. So, I said that we need to add some more meds if that's the case, and he agreed. She is now on Prevacid in addition to the Zantac, and if they can figure out a good way to give it to her, she will hopefully be on Erythromycin, too. I really want to stay away from Reglan if possible, so I wanted to try the Erythro and see if it would work for her. Unfortunately there are some dosing issues that they need to figure out, because to give it IV it is 30 mL of fluid every 6 hours, which for a 7 lb baby is quite a bit of fluid... they could give it orally but she's naughty about oral meds and either spits them out right away or throws them up pretty much as soon as they get down. So, they are researching how else they can give it to her, and hopefully they will figure something out.
Jan 03, 2009
jedd'smommy
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
You can put the Erythro right into the feeding tube. We did for a long time after Jedd came off reglan. Now I will warn you, we tried Erythro when Jedd was tiny about 12 weeks old. He was VERY small though he only weighed 12lbs at 6 months old so at 12 weeks he was probalby about 8lbs.

Anyways, it gave him explosive diareah. So we came off of it for a long time. then at about 9 months we tried the reglan and did around 16 weeks of it then went back toe EEs for a long time. We just dropped the EES recently and he is doing well as long as we control his diet intake.

But when he was little it really really made him empty his bowels really good...poop everywhere every single dose.

IDK but 30ML per day seems really high.....Jedd was taking around 1ml 4x's a day when he was little. When he recently came off of it he was taking around 2.5CCs 5 times per day.

I imagine the stuff going in the IV is much different than the oral med though. but I'm sure to go home, you will need to do oral or tube meds right. so you can put meds straight into that feeding tube. We did all Jedd's meds into his 6F NG tube and then right into his MicKey G tube.

How are YOU doing in all of this?????

I know it must be soo hard. Jedd was only in patient for 9 days for heart surgery and we were about to go stir crazy. He did a week of testing too, but that wasn't as bed because he wasn't sick. It was jsut testing so he was free to roam the hospital just not leave as long as his tests for the day were done.

Check with your
doctor first!