Posted By Posting
Nov 18, 2010
kml723
Just need to vent
So my 4 1/2 month old diagnosed with GERD since 2 weeks of age just doesn't seem to be improving much. He is on high doses of Protonix (PPI) and Zantac as well as a new med to help the duodenum hold more volume and pass volume better. He has been on eruthromycin in the past without success. He has some delayed gastric emptying but apparently not significant. He is now on an NG tube and we were doing slow feeds at night (40 ml/hr) with 3-4 bottle feeds during the day at 1 oz each because after 1 oz he tends to vomit. Now....he no longer takes the bottle (cries when he sees it and his Protonix was thus increased) and is on a continuous slow feed with his tube. He still vomits and spits up way too frequently and his weight hasn't budged in the past couple weeks. I think our gastro doc is definitely challenged with him as a patient and as parents we are at our wits end. We feel that perhaps he's headed towards an NJ tube and we are just so desperate to find something that consistently works. Of course, as I'm writing this, he just vomited. I just don't know what to do anymore!! I am so freakin' frustrated that nothing seems to work!! He's had an UGI (normal) and endoscopy (normal). I feel like we just can't wait for him to grow out of it because he's so far down on the weight charts (1st percentile and he was off the charts for a month previous to that). Ideas??
Nov 18, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
What kind of formula are you using? has he been checked for a milk or soy allergy?
Nov 18, 2010
kml723
He's on Elecare, calorie fortified at 24 kcals/oz.
Nov 18, 2010
tinytanner
Have you tried a different PPI yet?
Nov 18, 2010
kml723
He's been on Prevacid in the past with no improvement.
Nov 18, 2010
tinytanner
So sorry! Wish I could help more. Have you considered a second opinion from another GI? Sometimes having a new set of eyes can help miss a symptom/issue that is being overlooked. Doesn't mean you have to change dr's but maybe it will bring some new ideas to the table? Just an idea!
Nov 18, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
4 to 6 months can be the toughest months to get through from a puking perspective. His tummy will stretch, his LES will strengthen, he will be sitting up more so gravity will be on your side and his system will start digesting more effectively. Hang in there mamma... Time is their best friend.
Nov 18, 2010
jeddsmommy
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
As a former tube feeding Momma, I think your night rate is too high. It took us forever to get to that rate and for Jedd to keep it down. He tolerated that rate by the time he was about a year old.

Remember, your belly is not used to being fed at nightime. It usually rests and the motility in it slows down at night, so you don't wake up all the time hungry when your body needs sleep. So, when you are feeding at night, the rate will need to be lower. I would back off to about 30MLs per hour and see how that is tolerated. If that is tolerated, go up by 1ML per hour each night until you see a vomit.

Yes, it sounds like you are cutting back drastically and weight will be lost BUT remember, he is vomiting now as it is, so how much is he really keeping down in order to grow from?

You will also see an increase in vomiting when an NG tube is placed as the tube itself will hold open the LES all the time.......not fun but the facts. :-(

As far as oral intake decreasing, this is also normal. It is VERY uncomfortable for a child to swallow when a tube is down their nose and then down their throat. My Nana was in the hospital about a year ago and they had to put an NG tube down her to suction her stomach out for a few days due to an illness. She said it was the worse thing she has ever had to do, it was horrid to try and swallow even when she was just swallowing ice chips.

As hard as it sounds, if you think you will be tube feeding for longer than a couple of months, I'd talk to the GI about getting a referral over to surgery to have a Gastric Feeding Tube place surgically. Once you get a G tube you won't look back. Every family I know who waited and waited and waited to get one, wished they had done it sooner.

Nov 18, 2010
kml723
Jessica-a question re: your post
It's interesting you mention the G-tube. I would think that since our LO has consistently had a problem with vomiting that a G tube would not be the answer but perhaps an NJ tube since that could bypass the stomach altogether? Granted his vomiting has improved some since the high dose of PPI and NG tube placement as he was vomiting 100% of his intake (we knew this because we were measuring and he was vomiting 4-7 times per meal, no day, per meal.)
Nov 19, 2010
jeddsmommy
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 place a G tube and put in a GJ Tube though. I know the vast majority of Mom's who have tube fed will say the same thing, you need to take the tube out of the nose and just get one surgically placed. IT will help 100% with the oral aversion and wil help on the inside as the LES will be allowed to close.

Also with an NJ you can't place it at home, it has to be done at the hospital, sometimes they sedate for it and then they have to Xray it. With the chances that a child pulls an NG or NJ tube at least once per week....this is NOT an ideal situation to be in.

NG and NJ tubes ar meant to be used short term. If they are needed beyond a couple of months, it's WAY better to place a G tube.

I would try to back off on the rate and see if you get less vomiting first. Using a less invasive means first is always a better option. I would not jump so fast to an NJ tube and all that it entails yet.

You can also add a motility issue into the mix as well to see if you get better results too. Remember, once you go to either a GJ or an NJ tube you are going to have to use the pump 24/7 and go on continues feeds and all that entails. It's hard, really hard to have a young child on continuos feeds when they can't carry around their own pump in a backpack.

What kind of pump are you using and how fast are you doing the feeds now? That can also affect vomiting as well. Some kids can take their feed at lightening speed while others need it ran over a hour.....

Nov 19, 2010
kml723
Right now we are doing a continuous feed at a rate of 35 ml/hr. Today he's been a tad bit better but still vomiting and spitting up. Checking his weight today, he is still approx 12lb, 1 oz which is a weight we initially had back 11/5 so we haven't seen any sort of progress. I know having a NG or NJ tube leaves the LES open all the time and can aggravate vomiting but I guess I'm still stumped so to speak as to how a G tube could help because if he is constantly refluxing and vomiting, no matter how the contents get into his stomach, won't they just come up-whether he gets fed thru NG or G tube? Though it is interesting you mention a GJ tube-something I have never heard of. Our doctor seems to think that if we can get him to gain another pound and when he reaches 6 months, he'll be improved. We are doubtful because as the doc has mentioned, he is a severe GERDling that has so far resulted in 2 hospitalizations and with severe cases, is it still expected for infants to follow the same timeline of improvement as one who may have GERD alleviated by meds alone? Our pump is a Zevex EnteraLite Infinity. Initially when we started, he was doing 26 cal Elecare, 40 ml/hr overnight for 15 hours and then 3-4 1 oz bottle feeds during the day. A couple of weeks after put on the pump of which initially he did well on and we saw great weight gain, the vomiting and spitting up came back with a vengence and he was cut back to 20 cal, continuous feed of 20 ml/hr to help him heal and stop the vomiting. Meds were adjusted and we've worked our way to 24 cal but at a continuous feed since he doesn't seem to tolerate the bottle anymore. We worry that he's on his way to developing an oral aversion and we don't want him to lose his suck/swallow (he doesn't take a pacifier). Early Intervention is coming out early Dec.
Nov 19, 2010
kml723
totally unrelated: how do you do paragraph breaks?
Nov 19, 2010
bellysmom
reading your story and we were there we had to have a nissen fundo done and we went to he double hockey sticks and back to figure it out after. We went from g to j to g to ng back to g having a problem with the g and stomach acid came out from around the stoma due to an internal tear. this caused 2nd degree burns to her abdomen. We finally allowed her gtube to rest and placed an nj till one night she sneezed misplaced too far and decided it was neat to pull out. The nissen has its benefits does you lo suffer from apnea because this can be a determining factor. The nissen is done by taking basically the bottom of the esophagus and wrapping it around the top of the stomach. things can go down but they cant come up . one drawback is that they can't vomit so it can produce retching and dumping syndrome one syndrome we didnt have thank goodness. isabella is six and still retches but not as bad as the beginning 4 1/2 yrs ago it is a cure all for some
Nov 19, 2010
kml723
a fundo isn"t an option because of the amount of upper GI gas he has. The doc had said he was a rule out for it.
Nov 19, 2010
jeddsmommy
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
I don't have alot of time (just got home form a long work day) but I would not ever recommended a Nissen on a child who vomits alot or his nuero issues or one that has motility issues. It's never a good idea. The fail rate is HIGH. So, I'm glad to hear you all won't be doing that......LOL

I only say to do a G tube because the oral aversion is only going to get worse the longer you have the NG tube in use. This is the case for the vast majority of kids on tubes that I know and I know alot of them...LOL Swallowing with a tube in place is just flat out uncomfortable.

Once you get a G tube you can also start a blended diet. It worked wonders with Jedd's vomiting. We just put baby food right through his G tube via a syringe. I started out doing 1 ounce out of his 3 ounces of a feed as good and then built my way up to doing all 3 ounces of baby food and only running formula at night.

It's heavier and it stays down soo much better. With as thin as a NG tube is, it's really hard to tube feed baby food down one. I have tried, not when it was in Jedd, but we were curious so I broke out an NG tube I had in my stash and tried, it went through but it's not something I would try when one was in place. I'd worry about the rubber breaking.

What testing have you had done?

FWIW Jedd only weighed 12 lbs at 6 months old. That was the minimum they wanted him to weigh in order to go on by pass for his heart surgery. HE still didn't have enough blood volume for the machine and needed donor blood to prime it.

Nov 20, 2010
kml723
As far as testing goes, we've done UGI, endoscopy, and a gastric emptying scan. We're playing with his Periactin dose based on MD instruction. We talked to our MD today and if no improvement is seen with the tweaked med dose over the weekend, the doc is leaning towards doing a NJ on Monday or Tuesday. I discussed the G tube and possibly GJ and my concerns over pulling out the tube, repeated xrays upon replacement of a pulled NJ and oral aversions. It was recommended to have the NJ done to see if that makes for any improvement and if it does, then discussion over a G and GJ would occur but they don't want to do that procedure if that form of feeding won't help. If the NJ does not seem to provide any significant improvement, then they'd start looking to see if this is something more than severe GERD going on. It's interesting you did formula thru the G tube. We've found that any increase with Liam's feed (either thru calories-even a jump from 24 to 26 calories can wreak havoc on him) or by volume (rate) that that can send him back to square 1. But it sounds like you didn't have that problem??
Nov 20, 2010
bellysmom
I believe that a nissen helped my daughter who had all 3 of the issues you mentioned(Jeddsmommy) She has delayed emptying. epilepsy. and vomited bile from the deep green sea of her poor belly. You absolutely have a right to your opinion but the issues you mentioned are not part of the gamble for a nissen. When the benefits outweigh the risks then it something to e considered. It isnt a surgery option for everyone but an option for some!!!
Nov 20, 2010
jeddsmommy
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
When I first started doing food by tube I was only doing the jars without any boosting. Just to see how Jedd would do. We didn't start tubing high cal stuff until he was about 18 months old. He could tolerate it in a low volume by then.

What was the result of the GES that you had done. I will say that they are really unreliable and most if not all GIs will treat symptoms even if a GES comes back clear.

I think that is a conservative plan they have in place and sounds like a decent idea. Most NG or NJ tubes are places to see how the child will respond and then they will move to a more permanent tube and continue on the same course.

I will tell you that our local feeding clinic would not see us again until we had Jedd's NG tube out and had a G surgically placed. The other clinic we traveled to out of town had the same protocol all though they do work with NG tube feeders to wean. It is just really hard to work with a child who has an oral aversion when they have all the tape on their face and a tube down their throat.

Within about a month of getting Jedd's G tube we were seeing an increase in oral feeding. It wasn't a great volume but none the less, he was taking so which he had not done in forever.

Nov 20, 2010
jeddsmommy
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
bellysmom
Is your child an oral eater now though?

If she is, she will be the.first. of all the tube fed kids with those issues that I know who will be able to have had a Nissen and then with DGE and such to be able to go on and become a successful oral eater.

I am of the frame of mind as well as hundreds of other GERD Mommas I know that a Nissen is done to save a child's life not to stop them from vomiting. JMHO. I have seen Mothers come for help after getting a Nissen when their child has DGE and seen it completely reek havoc on their GI tract.

Once it's done it's done, it can't be undone.

We just were willing to try anything else before doing a Nissen on Jedd. We wanted to exhaust all of our possibilities before doing it.

I would even go as far to place a G tube and thread a GJ before doing a Nissen to give the child time to "grow" to see if things improve over time. DGE can get better over time and Jedd is proof of that. So, TIME was his best friend.

IMHO those issue as I have seen in hundreds of tube feeders ARE part of the gamble. It's just that you are one of the ones who did not see those issues. I'd count my blessings.

The vast number of kids who I've seen with Nissens are not oral eaters and if they are, it's limited. Over time, lots of time for most of them, they do becomes successful.

This is where our research as a parent comes in to play as well. If you get a GOOD surgeon, your chances of having this happen are drastically reduced. It is said that a "perfect" Nissen will NOT allow GERD to come up but WILL allow vomiting when needed for an illness. That's hard to do.

Nov 20, 2010
kml723
The GES came back in the "grey zone." We were told that it's normal to have 20-30% residual after 1 hour and that was normal. If there's 80-90% residual, then that's severe DGE. Liam came back in the 50% range. Of course, he only took in an ounce so I think there's some difficulty in relying on the results when he only took in so little but yet if he had taken in more, he would have vomited and then the test would have been cancelled. So, the doc said he has DGE but only to a mild degree and the thinking is that it's not a major contributor here. He was on EES but no improvements with that and now on Periactin and so far, no improvement there. The doc had said we would be doing the NJ tube most likely if no improvement over the weekend and it was mentioned that if there's no improvement with NJ placement then we'd have to start looking at something else causing this besides "just reflux." However, why would one still have vomiting with an NJ tube?? IF you're bypassing the stomach and delivering food directly into the small bowel, why would there still be vomiting? Also, do you know how you deal with hunger issues if you're not feeding into the stomach? I'm trying to research this info but not finding much, just general info on NJs. Thanks!
Nov 20, 2010
jeddsmommy
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
Periactin is a drug to stimulate eating and appetite. It may not necessarily work to make the stomach move faster since that is not it's primary use.

As far as being hungry on NJ feedings.....as long as the body is meeting it's caloric need you should not see hunger. Even kids on TPN (feeding the veins when the GI system totally shuts down) are not hungry. So, as long as you are feeding enough cals into the NJ you should be OK.

After heart surgery Jedd had an ND (nasal duodinal) feeding tube for the duration of the stay and he didn't have hunger issues and I never heard his belly growl. Actually, we didn't see any vomiting at all during that stay.

Since you don't know his whole story, moving to a GJ was one of the things we "should have done" in hindsight. His quality of life would have been soo much better. But, we would have lost oral feeds completely and it would have taken much longer to get back to G feeds then move to oral G feeds.

The stomach is a muscle and when you don't use it, it "forgets" how to stretch properly. So, when you go to a NJ or ND or a GJ and bypass the stomach all together, then, over time you lose it.

In order to tolerate oral or G feeds again, you have to slowly move to continuos G feeds, then be able to move to bolus G feeds and then move to oral feeds. It takes time and I've seen it done you would jsut ahve to be patient.

This was why my husband and I were very reluctant to move to GJ feeds even though the GI wanted to do them. We have a fantastic working relationship with him and he allowed us to keep going as long as Jedd slowly gained weight.

In the long run, it worked, but it wasn't fun. It sounds like you all are making a better decision than we did, that's great. It's one of the things I "beat my self up for" in regards to Jedd's care.

Another advantage to GJ Feeds versus NJ feeds in the long run is that you can "vent" the G portion while you are feeding the J portion. This will drain all the gastric juices out of the G and will lessen the reflux you will see.

With an NJ tube you can use a Farrell Bag but they are really hard to hang, I never got them to work properly at him even with a G tube. Jedd's feed always ran up the farrell bag instead of into him. I just couldn't get them positioned right together. The nurses at the hospital were great at getting them hung right and the farrell bag worked great for them....LOL I just couldn't get them to work...LOL

I know that Reglan is a much debated drug to use for DGE but for Jedd it worked great. He just had extreme irritability so we had to stop it. I mean, he was screaming 24/7 and not from pain, it just made him really irritable. It was horrid. But, it worked GREAT on him.

We even drained him to "see" if it was working. Before his dose we drained him and he would have around 45cc of a 90cc meal left. We would give the dose in the syringe and then drain everything back in and wait 30 mins until his feed was due.

We would then drain him again and he was consistence dropping to about 10-15 ccs left in just a mere 30 min time span. It was great. We hated to see that med go....we were soo sad. But, it had to be done.

It sounds like you all are working really well with the DRs, that is fantastic.Where are you all getting seen? We are in VA in the Tidewater Area. We get seen at CHKD here.

Nov 20, 2010
jeddsmommy
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
I should add that Jedd has also been seen at 2 other major children's hospitals as well...LOL Richmond Children's in thei feeding Program and at Nationwide Children's in Columbus, Ohio in their Motility Program by Dr DiL and Dr M (for short, don't want to use full names. google it, you will find him and her, I promise). Dr DiL is one of the leading GIs for motility in the states.
Nov 20, 2010
kml723
Jessica, thanks for all your input and support. We are receiving our care at Children's Boston and have a great relationship with our GI doc, it just gets so frustrating when you see such progression with his vomiting and yet every intervention has failed to succeed. How long was Jedd on a G tube for and was he doing any oral feeds prior to? And how was his growth (percentiles) on the weight charts? Were you able to play catch up- I know you mentioned he eventually gained weight slowly. It makes us quite nervous that Liam is in the 1st percentile for his weight and we are afraid of not being able to catch up.
Nov 20, 2010
jeddsmommy
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
Man, you are at a fantastic hospital. I wouldn't worry at all. I have not heard any negative things about them and they also have a leading motility department too!!!! That's just great. It makes sense how they are bidding their time and be cautious. It's a good thing. I know several kids who are seen there as well and they LOVE it!!!!

Are you sure that an ear infection or anything like that is not going on right now too? Jedd's vomiting got soo bad when ever he had an illness. Even a UTI would make him puke!! It was awful.

Jedd's heart was repaired at 6 months old and he started gaining better at that point. But, he was still slow and steady. He played catch up from that for about I'd say, maybe 3 months. then the weight gain slowed down again and we just slow crept on.

It was 12 lbs at 6 months old and I know that by his first birthday he was still not at 20lbs because we could not turn his carseat around yet per the laws here. We probably turned him around at about age 15 months if I am remembering right.

As hard as it was, when Jedd starting eating orally, his vomiting did decrease. There's just something about the brain telling the body to swallow and the body contracting the muscles that gets the belly ready for food. versus, the body being pumped food without all the other signals being sent.

Jedd did have motility testing at 15 months old on his GI tract and it showed mild slowness. He had an Antro Duodinal Manometry test done at Nationwide. This test can only be done on a child with a G tube site.

This testing is available at BCH, I know this for a fact. They are one of 2 facilities that can do it. We looked into going to BCH but Nationwide opened up faster to get us in and we have family that lives about a hour away. IF we had gone to Boston, family was about 3 hours away.

Also, I know that BCH does is a testing facility for Cisapride. It's one of a few places that is allowed to continue to use that drug even though it's not FDA approved anymore. I know someone who's child uses this drug under their care.

You have to get "approved to use it" by passing lots of tests. Not sure if you would qualify as most of the study participants have GI tract issues where their tract pretty much does not move and the child is on TPN. But, just thought I'd throw that out there.

Have you had a scope done yet?

I'm not sure how accurate it will be as you are using Elecare already but sometimes GERD issues can be caused by EE. A scope would reveal that. But because you are using such a hypoallergenic formula that is used to treat EE, you could get a "false negative".

Nov 20, 2010
bellysmom
jedds mommy
My Isabella is an oral eater we had early intervention from early on. I was taught to use nuk brushes, massagers and other fun things as not to create oral aversion. She has beeen an oral eater since birth. We just found out last week that bell has a mitochondrial defect which says a lot about her issues. We saw a diagnostic dr b/c our GI referred us. Bell stopped breathing over four hundred times in an 8hr period and that was the ultimate defining factor for us. It is true that once a nissen is done it can't be undone but it can stretch. By neuro issues they mean severe neurologic impairment such as wheelchair bound palsy. I'm glad that your son has had the fortunate pleasure of time on his side. He is a handsome boy and looks like he can light up a room. This goes for all of our children as they are what keeps us going on those days that we think that we can't. Parents make the descions they do because at the time they feel it is what is best for their child and isn't that what we all do? As for vomiting we bid farewell to vomiting a long time ago. When she does have a stomach bug she will not vomit and she is vented or the vomit seems to take the path of least resistance in the form of as we call in our has "MAJOR POOPS COMING" Bellymonster as we call her is a lovely thriving little girl who is kindergarten and amazing us everyday!!! She is only 32 lbs but consumes almost 4000 cal yes 4000 cal per day. She loves thickened coconut milk and her favorite is "yogrit"(gerber 2nd food fruits) I am impressed that you know hundreds of tube fed kids. Can you please let me know where you found them as we are still on g-tube thank goodness because we battled pneumonia and an ear infection and love that pedialyte could be given with no hospital or better yet an "ouchie" To KML- we will always worry when our children aren't on the charts. One other avenue you may try is malabsorption issues. Keep venting it shall help you to keep your sanity in the viscious world!!!
Nov 21, 2010
jeddsmommy
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
bellysmom
I know the tube feeders from another website I'm a moderator on. Not sure if I can say that here or not. It's at www.parent-2-parent.com. Let me know if that link works for you.

Since I have known most of them, it not almost all of them for a very long time, they have spilled over to my FB page so we can keep in touch. Some have come and gone and some have come and stayed.

Nov 21, 2010
kml723
Well our doc just called and we're going to have the NJ tomorrow. I hope it works! Not much improvement over the weekend but would love to see a couple days of no vomiting and weight gain. We do have some reservations but feel for right now, it's needed as the current plan just isn't working to expectations. The doc said for the NJ to be in as little time as possible and I discuss G/GJ tubes as well but we'll see how the NJ goes for now.
Nov 21, 2010
jeddsmommy
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
I will be praying things go well for you all tomorrow. ((HUGS)) How long are they going to keep you all in patient?
Nov 22, 2010
dcd
To do paragraph breaks type a carrot (<) then a p (p) then the other carrot (>)
Nov 22, 2010
kml723
They did the NJ tube as an outpatient. In fact, they just advanced his NG tube further down to make it an NJ tube so now, the port where we connect his food and give meds is literally 3 inches from his nose. We were so mad!! We asked if the area on the tube that was taped down when it was an NG-would the stickiness of the tape on the tube be bothersome since now it is inside him somewhere-response"umm, no, it shouldn't." Ideally, I'd rather a new, longer tube be put in but I don't want to subject him to any further radiation/xray than necessary. And no one can give a definitive answer re: his meds and using the tube. They told us we should be able to give the Protonix but to me it didn't make sense to give the Protonix into the jejunum-I thought it had to make contact w/acid cells in stomach to work. Frustrating!!!
Nov 23, 2010
jeddsmommy
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
OMGosh, I am soo sorry. Yes, they should have yanked the old tube and placed a longer tube. It will just be soo annoying to have the end of the tube that close to the face ((HUGS))

Well, since you have an NJ tube you will just have to put meds straight into it if you can't get them down orally. Not the best but it will just have to do. :-( We had to give some Jedd his Carafate by tube as he would not take it by mouth, most effective way, because he just would NOT take anything orally. It was the best we could do to help him.

I am praying the NJ tube makes a difference quickly.

They do make extension sets for NG tubes. We never needed one but I have seen photos of them online and with other kids using them.

Nov 23, 2010
kml723
Things are not going well! At 4am Liam woke up vomiting a lot of "old blood." So we ended up going to the local ER only to go to children's boston. So now we are inpatients and he had a few more episodes of the vomiting brown blood. He will be undergoing a 2nd scope to see where the source of bleeding is coming from as well as brain MRI to see if there's any neurologic component to the vomiting.

I will look into those extensions for the tubes! Thanks for the info.

Nov 23, 2010
jeddsmommy
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
Did they test it for blood or are they assuming it is blood? We have pulled back some blood looking stuff from when Jedd had his NG tube, they told me that I have placed it deeper than normal and it was actually really really digested formula and to smell it.

When I smelled it, it smelled like formula. I pulled the tube back a tad and it went away!!!

I am glad they are not playing around with it though, that's really safe to do just in case.

It could also be bile backing up.

Anyways, it's good they are admitting him as they can keep a close eye on how the new tube is doing.

((HUGS))

I know someone who's really complex daughter just about lives at BCH. I can pass along her blog for you to read if you would like. Maybe you two can get together and chat while you are both there.

I know for sure her daughter is there right now.

Nov 24, 2010
kml723
Thanks Jessica, that would be great! Most of last night L spent retching and continuing to vomit the old blood as well as some bile. Interestingly, they stopped his NJ feeds at midnight in anticipation of a scope today and the retching stopped, which I think leads us towards the direction of some sort of motility issue. He's doing much better today since the retching has stopped and hopefully we can be on our way to start getting some direction on what to do...
Nov 24, 2010
jeddsmommy
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
http://www.fromthebanksofjordan.blogspot.com/

Here is her blog. If you want her FB I can contact her and see if it's OK. Just let me know.

Check with your
doctor first!