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Old 04-20-2008, 11:22 AM   #1
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Anyone else here have a g-tube dependent child?

Joshua, 25 months, got a g-tube last August as a result of an unfortunate side effect from his first brain surgery. Prior to having the first chiari decompression, Joshua ate and drank just like a typical 1 year old. He loved food and enjoyed 3 meals & snacks each day along with nursing. After surgery, however, he would eat just a few bites and then act as though he was completely full. He's nurse for just a few minutes, as well. As a result, his weight plummeted and after several months of testing, it was determined that something neurological had happened and the only thing to do was put in a g-tube to feed him.

After getting the tube, Joshua did really well. He took 7-8 ounces each feed and was gaining almost a pound each week. His energy level increased, his moods improved and he made huge developmental gains. After 6 weeks, it was time to have the PEG tube changed for a Mic-key button, so we checked into the hospital for the 20-minute outpatient procedure and figured we'd be on our way home a couple hours later. It didn't work out that way. There was a bizarre complication whereby the tube didn't go into Joshua's stomach like it was supposed to ~ it got into his abdominal cavity, instead ~ which then required emergency surgery. After that, something neurological happened again and Joshua crashed in the hospital. He was unresponsive & began vomiting every 20 minutes and no one could figure out why or what to do about it. I was told things were dire and when I asked if he could die I was told it wasn't an unrealistic concern. It was an extremely scary time. 6 days after the messed-up GI procedure, Joshua was taken back to the OR for a second brain surgery. Our neurosurgeon wasn't sure what she was going to do, but she said she had to try *something* because otherwise Joshua was not going to have a good outcome.

Thankfully, after the second chiari surgery, Joshua stopped having intractable vomiting. Unfortunately, it never stopped completely and ever since that day (October 1st), he has taken Zofran to combat chronic nausea and he still vomits every day (some days more than others). We were discharged from the hospital with Joshua tolerating 2 ounce feeds and we were able to advance him to 5.5 ounces at a feed, but he has never been able to tolerate any more than that without throwing up the entire feed.

After his third brain surgery, Joshua was diagnosed with gastroparesis ~ delayed gastric emptying. His stomach doesn't digest solids very well (sometimes not at all) and he will throw up food he ate 6, 8 or even 12 hours after ingesting it, completely undigested. He also can still not tolerate more than 5.75 ounces at one time per g-tube feed. He spent 2.5 weeks in the hospital in February/March as we (his medical team) worked to get him to the point that he could tolerate & keep down the minimum amount he needs for hydration each day. No matter what was tried, he just couldn't cross that 5.75 ounce threshold and the delayed stomach emptying meant we couldn't feed him as often. It was (and continues to be) frustrating and a challenge to get enough food (formula) into him each day to ensure good growth & development without increasing the number of times he vomits.

We do continuous feeds at night in addition to daytime bolus feeds and Joshua can tolerate 1.5 ounces per hour. We're trying to slowly increase that amount by 5ml (1/3 ounce) each week. He still nurses, too, which I allow him to do as he wants, and he eats a tiny amount of food most days, as well.

Are there any other g-tube fed kiddos on this forum? If so, have you had any similar experiences with your child (on the tubing front ~ I don't expect you to have had the chiari stuff)? I'd enjoy chatting with another mom about the challenges/perks of g-tubes. And if there are any moms of kids with g-j tubes, I'd really like to hear from you as Joshua's GI has said that would be the next step if we can't get him taking enough formula in to grow well.

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Old 04-20-2008, 12:10 PM   #2
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Re: Anyone else here have a g-tube dependent child?

I don't have any g-tube experience, but DS2 was fed exclusively by NG tube for a period of 6 months. It sounds like you have a lot of challenges ahead, and I wanted to give my support.
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Old 04-20-2008, 07:01 PM   #3
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Re: Anyone else here have a g-tube dependent child?

our dd was on a G-tube for 5yrs
she never had a thing in her mouth for the first 2yrs
she was on thickened formula till she was 5
had a surgery that yr and it helped with the reflexing
I couldn't put thin liquids in her tummy or it would come out her nose
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Old 04-20-2008, 08:56 PM   #4
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Re: Anyone else here have a g-tube dependent child?

Hi there,
Reading your post brings tears to my eyes, because I can relate so well...
My first child was born with a rare genetic disorder (Smith-Lemli-Opitz Synd) and got a g tube placed at one week of age due to lack of suck. She also had chronic gerd, constipation, vomiting, and slow motility. I tried to teach her to eat orally, and she did take some puree's from about 6 mos to 18 mos of age. When she was about 12 mos, she got on this medication called Propulsid, and it was miraculous for the gastroparesis! She actually ate because her stomach was emptying and she was hungry for the first time. Then they took it off of the market, due to bad interactions with other meds and some deaths from that. (I would have promised never to give her any other meds without approval if I had known that stopping this med would basically end her oral eating for about 5 years!) 2 yrs ago I took her to Baltimore for a special feeding program to teach her how to eat and she now eats up to 8oz of puree'd food at a time. She still gets all her liquids via tube, and a lot of food that way, too. She has basically outgrown the vomiting, but at one time, she was vomiting up to 12 times a day! We have also done the continuous drip feeds in the past. (BTW: I am selling our Kangaroo Pet pump for $400 on ebay, if you're interested! We own it, and we haven't used it in 2 yrs, so I thought someone else could use it...$1,000 piece of equipment)
Since I never got to bf my daughter, only pumped for about a month, I can only imagine how hard it would be to nearly lose the nursing.
Oh yeah, there is a drug that is available in Canada called Dom Peridone or something like that. It is supposed to be like Propulsid and I know how you can get it. I haven't had the need to try it with my daughter, but it's nice to know it is out there.
I guess I just wanted to say that I have been through some of what you're going through and I feel for you. I'll be thinking of you!
Warmest regards, Kelly
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Old 04-21-2008, 05:52 AM   #5
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Re: Anyone else here have a g-tube dependent child?

My DD is not on one - but let me see if I can get Sarah (katedanzer) to look at this thread.

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Old 04-21-2008, 09:02 AM   #6
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Re: Anyone else here have a g-tube dependent child?

He was not with us through it, but our youngest son was g-tube dependent until age 6 with combined periods of exclusive TPN feedings totally about 18 months of that time frame. Foster mother took him home from his last surgery 2 years ago fully g-tube dependent. He refused oral feeds entirely until later that summer when she finally got a dentist to treat his extreme bottle mouth.

In the last 2 years, fostermom has successfully taught him to eat orally but never got him off the g-tube feedings, which she continued every night he lived with her. She made an attempt to wean him from the g-tube last year but his weight plummetted and she failed. However, she severely restricted his eating to 3 meals and 2 snacks per day as well. His daily caloric needs are approximately 3000cal+ that feeding schedule was never going to work.

We have had him home for a month now. Immediately, we switched him from 3 cans of Pediasure nightly to one Scandishake with breakfast every morning, for the same calories. We push high calorie, high fat and high salt foods on him. And, we allow him to graze constantly as he requests. If he goes more than 2 hours without eating, we strongly encourage a snack to him.

Since homecoming, he has gained 3 pounds but last week lost .5lb. We are under the parameters that so long as he continues to gain .5-1lb per month, we can discontinue all g-tube feedings. I'm about to weigh him as soon as his breathing treatment is done and check his weight for this week. I take weekly weights on him so we aren't surprised in a given month.

Its ongoing and still not completely through this period of his life. Even if we're successful in this attempt, the g-tube itself will remain in place. Should his weight drop, we will have to act immediately to bring it back up.

Yay! Just weighed in up 1.5lb from last week. So, we're looking at a net gain of4lb and we can avoid the g-tube again for now.
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Old 04-21-2008, 09:25 AM   #7
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Re: Anyone else here have a g-tube dependent child?

My Eli has had a feeding tube since June 06. He was born at 26-weeks and at 10 days old he contracted NEC, which caused him to loose 3/4 of his bowel. Before surgery we where told there was less then 1:3 chance he would make it out of the surgery and after the surgeon he didn't think he had enough bowel remaining to ever got off TPN. E's billi level was over 30 and we where on the bowel transplant list at NICU discharge (Aug 06).
About 3-weeks after we got home his broviac clogged. We went to surgery to try and place another, but they weren't able to find a suitable spot to place one. So we just waited, and surprisingly his labs & electrolytes stayed stable for 7 days so they let us go home w/o the broviac on continuous feeds.
I'm happy to say, E has never been back on TPN He is very growth retarded, but the alternative is watching my son die of liver failure so it really puts a different perspective on his failure to thrive. He is going to be 2 next month and is 14 lbs 4 oz and 27 inches. E has always been on continuous feeds. Because of his short gut, his total gut transit time is about 18-25 minutes. So anytime we try to up his rate, he just stools out. On his stooling out days, E can poo 30-40+ times
But really, most days he is a happy bright little guy. We had his PEG replaced with a Mic-key last July. I HATE it. It's so darn bulky, always leaks and sticks out like 2 inches from his skin. So much for low-profile
Anyways, side rant about my surgeon not wanting to put in another PEG. He does good with his feedings. It really isn't that big of a deal to do continous b/c it's just always there. So you just get used to the tube being a part of E.
And he has CP, so he's not mobile yet so it makes it easier. We've only had 2 tubes fall out in the 2-years he's had them. And E doesn't take anything by mouth. I pumped for almost a year, but he was never able to tolerate bm He's always been on Elecare, we tried bm many, many times but it always went out the same way it went right in. Same way with any foods, but he has such oral aversion we just don't press the oral issue.
I know I'm probably just rambling but if you have any questions or just want to chat feel free to send me a pm.
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Old 04-21-2008, 09:31 AM   #8
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Re: Anyone else here have a g-tube dependent child?

My DD is exclusively tube-fed. She has a poor swallow reflex and can't handle anything by mouth. She can't even handle her secretions so we have to suction her about 20 times a day.

I was so nervous when we had her peg changed to a mickey because they told us it could be complicated! Thankfully everything went ok though.

DD is mostly on continuous feeds. She started off on bolus and did very well, but then because of the nurses in the NICU not doing their job, we had complications with feeding and she ended up on continuous. So now her stomach is tiny and we've tried to slowly stretch it back out, but no luck.

She was on continuous for 21 hours a day with one 3 hour break up until 2 weeks ago. Then we took her off for 4 hours a day in two 2 hour breaks. I just upped her to 5 hours off (1,2, and 2) and in a week we'll do 6 hours (2,2,2) and stop there. I know she can't handle more than 45 mls an hour and that will put her at about 43. I think it will be better for her tummy to get some breaks and at this time, that's probably the closest to bolus feeds we are going to get.
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Old 04-21-2008, 11:43 AM   #9
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Re: Anyone else here have a g-tube dependent child?

Quote:
I HATE it. It's so darn bulky, always leaks and sticks out like 2 inches from his skin. So much for low-profile
Isn't this the truth! M is coherent (MR but cognitive of his surroundings just fine). Its a constant battle to get a shirt that feels right on him without being too bi and still accomodating that darn button.
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Old 04-22-2008, 02:32 PM   #10
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Re: Anyone else here have a g-tube dependent child?

I'm Kathy, mom to Alec who is 3.5 years old. I am a balanced translocation carrier and unfortunately passed an unbalanced version of my translocation b/w chromosomes 4 & 7 to Alec which means he has Trisomy 4q and Monosomy 7q. Either one of those syndromes alone result in significant disabilities and unfortunately my son was unlucky enough to get both combined. He functions on an infant level physically. Mentally what he can convey is infant like but I suspect cognitively he is really around 18 months unfortunately trying to unlock that cognitive well is challenging since he has very few ways of communicating but we are working hard on it and making progress daily.

He has been tube fed his entire life sometimes by TPN but mostly through TEN aka g-tube feds and he is a 100% dependent on tube feeds He has sickle shaped sacral spine, two hemivertabrae, severe reflux, slow motility, uncordinated swallow, sacral spine fatty filium, anal stricture, anal atresia and a colostomy. Those are only his diagnoses and conditions affecting the GI tract, I won't bore you with the rest.

We tried for the first few years to get him to eat orally but we weren't successful. Now that he has aged out of EI and is in Part C public preschool he no longer gets feeding therapy and we can't afford to pay for it. We have had to decide what was more important long term. The ability to walk won the debate so what extra therapy we can afford is going to his private physical therapist.

Sorry can't help you with the J-feeds, we have not needed them but there are moms who do on the parent-2-parent dot com. I can't post a link because I'm too new.

Tube Equipment that we have used
Infinity pump
Companion pump
AMT buttons
Corflo buttons
Mickey buttons

Our preferred set up is AMT mini one button with the Infinity pump but right now he has a mickey button simply because I had one left over and wanted to use it up because those things are so dang expensive. He is on 18 hour continuous feeds on 30 cal unflavored Elecare. It is the only set up he tolerates at the moment. I just feel fortunate we can allow him 6 hours off a day to crawl to his hearts delight. The extra physical therapy is paying off and he has become a proficient crawler and just LOVES IT.

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