Wednesday, May 12, 2010

g-tube frustration

I have to say I'm having a low night tonight. This g-tube thing is really tough. I'm trying to avoid overnight feeds because Jonah is a very active sleeper, and I worry about the tubing pulling on his g-tube site and skin, him becoming entangled in it, the tube popping out and getting milk all over his bandages, and him waking up and pulling on it and hurting himself. He's just REALLY an active sleeper. (Needless to say, I won't sleep peacefully wondering if something has gone wrong.)

That leaves me only a couple options:
- Let him eat what he will by mouth and pour the rest in a syringe and let gravity move it into the tube OR
- Attempt to pump his full feeding over an hour (because that's the longest I can keep him entertained in his high chair).

Problems we're facing right now:
- He's eating way less voluntarily than he was before the surgery. Before surgery, he would eat usually six to seven ounces without a fight, and would take the rest once he was mostly asleep. Now he'll only eat three or four and refuses the rest, even in his sleep. That means we're having to bolus six to seven ounces, instead of just a couple.
- He won't hold still or be content long enough to bolus feed that much. Any cry or even laugh, yell, or blowing a raspberry pushes air out of his stomach and pushes the milk back into the syringe instead of it going into his tummy. He has to be completely relaxed for it to go in. It takes forever... or at least it seems like forever when you are trying to wrestle a 14 month old and keep him happy in your lap.
- By his third bottle (I usually only give him three bigger ones so he'll be hungry for solids in between... mostly unsuccessfully), he's puking most of it up. Before surgery, we were down to one gusher a week. We're now up to one or two a day again. Whether I've JUST bottle fed that day, bolus fed by gravity, or used the pump, by that nighttime bottle, he throws it up. And unlike his normal gushing from before, he refuses to take anymore by mouth after he's done throwing up. So the last few nights, he's gone to bed on a mostly empty tummy.
- He's had, at most, 24 ounces since he went in for surgery. Before he was taking 27 to 28 ounces a day.
- He's stopped eating his Cream of Chicken Soup, which he was eating well before surgery. That was giving him anywhere from 120 to 240 calories a day. Now those are gone.
- He's not getting anywhere near 1,000 calories... or even 800.

So to sum up - he eats way too little now if I don't use the tube. It's become a daily necessity instead of just a back-up in hard times. When I bolus feed, I can't get him to hold still and be patient long enough to get in six ounces. I tried pump feeding him 7 1/2 ounces tonight over an hour, hoping that would be a slower rate than the gravity feed and that I could put him in his highchair and be hands-free for entertaining. He seemed to do okay with it, but got overly tired and upset getting ready for bed, and puked everywhere once we got him up to his room.

This g-tube thing was supposed to be our failsafe way to get him the nourishment he needs. It was supposed to make life less stressful and help him gain weight. It was supposed to HELP him.

So far, he's puking lots more, eating less by mouth, has lost weight (I'm pretty sure), and is not tolerating a lot of what goes through the tube. I don't know what I thought it would be, but I'm more stressed out now about him not getting nourishment than ever.

PLEASE TELL ME IT GETS BETTER.

36 comments:

Janel said...

I really wish I had some pearls of wisdom for you or some advice for a g-tube - but frankly I know nothing about them.

The only thought that I had was, can you start a feed when he goes to sleep and only let it run for an hour or so while you sit there?

I just HATE that you guys are having these issues. I just wish everything was as you expected it to be.

Praying Praying Praying!

Masto Mama said...

I hate to say this to you--but did his docs ever tell you that g-tubes make you vomit/reflux more? The tube causes pressure in the stomach, and that pressure sends whatever is in the stomach upwards. Also, the more you use the tube, the less he will eat, because he is getting satisfied through the tube feedings. My honest opinion is that you should stop using it completely unless he is sick--isn't that what you got it for anyway? I hope whatever you decide to do, it gets better. I will be praying that it will!

Cathy said...

I always read your blog, don't really comment.

It DOES get better.

The fact is, he just had pretty major surgery on his stomach. That will change things, that will make his reflux worse. He needs time to heal. His motility is probably bad right now.

Do you vent him? When we were doing bolus feeds, I had to vent every 1-2 oz, let all the air come up. If you're doing a pump feed, get a prescription for Farrell Valves - you can vent and feed at the same time. It should help cut back on the puking, getting the air out.

You can also ask your GI about trying motility medications - erythromycin and/or Periactin. You can also pH test his stomach contents (empty, before a feeding) to make sure his reflux meds are doing enough.

Hang in there. You'll figure out what works, it just takes time.

Amber said...

I have been reading your blog for a while and thought I would maybe try to give you a few suggestions. My daughter has a g-tube since she was about 2 months old. We have had to try everything to get her to not throw it backup or have tummy aches. The only difference is she had a nissen also which helped with the throwing up. I don't thing Jonah can have that done. I haven't heard you mention it in your blog. It sounds like he may have some air in is tummy after he is feed. Have you tried laying him down right after his feeds and letting the air flow out? Some food will come up the tube, put you can always just push it back up. Another option which is much more time consuming is to just use a 60cc(2 oz) syringe and push in 60cc every couple of hours. My daughter is 7 and she still can not tolerate more the 65cc over an hour on the pump, if I do any faster she starts retching. I am trying to think of other things that help. I know that gtube is very intimidating but after awhile if will fell like you have been doing it forever.

Misty said...

I'm not an EB mom so I cannot tell you anything about the g-tube, but I can tell you that I am lifting you up for peace and comfort as all these issues get straightened out. I'm sorry that you are struggling so much when you'd hoped and prayed that this was the right thing to do - I'm sure it really was, but it would be great if something got easier right? Now that I can get...it seems sometimes like it is one step forward and 3 steps back. But Patrice, you are not alone in that - and we mommies all understand that you're so frustrated that your baby isn't seeming to get what he needs when it involved such a huge burden of prayer and research on your part. But we'll continue to pray for you and Matt and Jonah and ask that you get that confirmation soon. That you'll see the improvement in makes in Jonah's calorie intake and that he starts to take in more calories and gains some more weight. Sending much love and many prayers!

SmittyAndColey said...

I agree with what some of the previous poster said - the tube will initially make his reflux gusher worse. It will take time but they will slow down again. The other thing to consider is that 7.5oz bolus is really *large* in the gtube world, whether it be by pump or gravity. My son is 2.5yo and he can only do 180ml (6oz) spread out over 1.25hours by pump. Any more, or any faster and it's coming back up. The way the stomach "feels" filling up from the gtube is a different sensation than feeding by mouth and is much more like to trigger muscle spasms that will again aggravate reflux. When the tube is new, the motto is slow and steady wins the race. I'd try smaller boluses more often. I always tell new gtube moms to keep boluses to 90ml (3oz) until they are fully tolerated and then move up from there.

Night feeds can be scary but it may be something that will actually give you great comfort once you get used to them. My son is very active as well and he rarely got wrapped up or undone. It's a great way to get in calories at a super low rate that is easily tolerated. You can tape a small piece of gauze or micropore tape to make a little "flag" on the extension. Then, anchor that little flag to his diaper. Or, just thread the extension tubing through the front of his dipe. That will keep it anchored so it doesn't pull. Even if it did pull while he was sleeping it'll only tug his dipe and not his button. Please feel free to email me anytime, I'd love to be of any help. It's supiesmith(at)yahoo(dot)com

Laura A said...

Wow - I have nothing useful to add here, other than to let you know I love you and am praying for you and sweet Jonah. Praying for wisdom for you and Matt to know what to feed and how/when, and also that Jonah's tummy will settle and he'll get exactly what he needs.

Love,
Laura

Marcy said...

Our prayers are with you and I do hope that he doesn't lose much before he settles into his new "routine" and it becomes second nature.

I happened upon your site thru another one that I was following. I will pray for your little one. Jonah is so handsome!

MD said...

I don't pretend to know anything about g-tubes - but I was wondering if you could do it for a couple hours while he sleeps and you sit there with him during that time to make sure he's not pulling anything out?

Alicia said...

I have no idea about g-tubes, but I read a blog about a heart baby. He has a g-tube and she found that putting blended food through there versus liquid made his tummy feel better (against the advice on her nutritionist). You could try e-mailing her or leaving a comment on her blog to see if she has any advice about tube feeding. She has seen a really big improvement in her son since blending foods. (Again I have no idea about these things, just a thought). Her blog is http://simmonsfamilyupdate.blogspot.com/

I hope things start to improve for you and him.

Becca B. said...

No words of advice since I don't have experience...but I am promising prayers. Prayers for the vomiting to stop (or at least slow again), prayers for him to want his bottles again, and prayers for him to wake up one day soon ready to chow down on some solids!

Love you guys, wish I didn't live half way across the country, I'd love to come help you with a dressing change, feeding, playtime, or anything else you would need. I would love to meet you, and sweet little Jonah! I feel like you all are my close friends, and it make me sad that your having such a hard day...lifting you up from Arkansas.

Masto Mama said...

Hi again Patrice--you responded on my comments, and I didn't see an email address for you, so I thought I would respond again here. My only thoughts on your response is that you might have to wait it out until he's hungry enough to give in and eat. If you feed him right after he refuses, he'll quickly learn that he can keep refusing.

One commenter mentioned motility meds and listed Periactin and Erythromycin. Periactin is not a motility medication, it is an antihistamine that is used to stimulate the appetite in children who don't eat enough. I highly recommend it, because it works really well. Erythromycin is a motility med, but it doesn't always work well. If it works, it will speed up the rate at which food leaves his stomach, therefore making him hungry more often. In our experience, Reglan works much better--but Periactin is the easiest and safest way to stimulate his appetite (and it would probably help any itching issues he might have).

Anyway, I hope things get better--take care!

Katherine @ Grass Stains said...

P, Clearly I know nothing about G-tubes, but I'm going to check with Honor and Lisa to see what advice they can offer. What I CAN say is that I love you and I miss you and I'm praying for you all the time. I also have a couple of videos of Jakey looking at your blog (he reads it every night after supper) that I'm going to try to send you and/or upload. I hope they will make you smile. :)

Skye is the limit said...

Hey, I don't know if this will help. But I have gone through the same issue. Although skye is older now and doesnt choke herself on her line anymore BUT you could still do the over night feed, same calories and everything, same amount of food but spread it out doing bolus. Push through maybe half or a third before he goes to bed...then another right before you go to bed and then another when you wake up. Just a thought, I use to do something like that with Skye. Its just easier than not sleeping at all at night because you are wondering what is going on in that crib with that stupid gtube and feeding pump :)

Feel free to email me if you want to chat!
kmessineo@tmail.com

Kim and Asa said...

I'm so sorry you are disappointed in the G-tube right now. My son couldn't take the 6oz bolus either at first. That is what the surgery center sent us home with instructions to do. It didn't take long for me to adapt those directions to have the same amount for a longer time! Give him some time.

I know you don't want to replace oral feeds with tube feeds but at this point slow, steady tube feeds would be much easier on his belly. Then work your way back up to an eating pattern. If you don't want a night feed how about a loooong day feed. It isn't really a problem to have him on the pump for several hours while you are watching him and he is playing. My son is on the pump while he is playing with toys in the floor or in the exersaucer. He had a stander before the tube and used the tube while he was in that too. You'll find the routine that works for you!

Hugs and lots of prayers!!

Alison said...

I am praying that things get worked out. Sounds like many of a the commenters have had experience with these tubes. Patience, Patrice, it will all get worked out and the tube will help Jonah gain and maintain weight. Let time flow on.

The Simmons Family said...

Patrice.. IT DOES get easier!! Owen has always been tube fed, thanks to his 1/2 of heart and low, low sats, he has no energy for eating.

When we first got the Gtube at 20 months (which replaced the NG), his oral feeds got worse and he puked SO much more.

I will tell you the best thing I have ever done was put him on a blended diet of real foods. Just 8 weeks ago I made the switch and Owen is eating SO much more orally, his energy levels have been amazing and the puking stopped immedietly. I'm talking 5-6 times a day gushers on formula. I can't say enough great things about it.

I wrote a post on it here if you're interested....
http://simmonsfamilyupdate.blogspot.com/2010/04/blended-diet-101.html

I also am not huge on the pump. Owen doesn't liked to be hooked up. Who would? I usually just blend up his meal, put it into 5 or 6 (2ounce) syringes and then inject one syringeful every 15 minutes until his feed is done.

It might work for Jonah.

Even if you continue on with the formula and he doesn't want to eat as much by bottle... it's normal. He'll catch back up.

Andrea

Sandy said...

Patrice,
I know nothing about g-tubes, but I do know something about prayer. Please know I'll be praying today . . . for all of you.
Love & Prayers,
Sandy Moore

Jessi said...

Hey girl,

Sorry things are low right now. Know you are in the prayers and thoughts of many who love you guys!

I am not an expert at this AT ALL but we do tube feed a couple kids at work, they're a little older and can be entertained better but one of them does have throwing up problems. I feed him two ounces and wait 10-15mins for the next two ounces, repeat and give the last two. It works for him...on days he is coughing a lot and throwing up, I sometimes give less and do larger breaks. I know that would probably be frustrating because you'd be feeding Jonah around the clock pretty much but it might work...? Our other kid sits in a bouncy seat while we feed him...could you do that while Jonah watches his favorite show or something? Sometimes he only gets an ounce then a five min break...then another ounce and another break, etc. I'll ask these moms about how they got them to sit and handle the food when they were younger (one is 2 and the other almost 2). Do you have a clamp on the tube for when Jonah coughs or laughs? I'm always having to clamp it because of coughing but then the milk doesn't shoot back out at me!
About worrying at night, could you wrap a strip of gauze over the button to hold it in place while he sleeps? One of our kids is SO rowdy and rough and I worry all the time that it'll come out but it doesn't! Does Jonah sleep in a onsie? If one of our kids is messing with their button too much we put them in a onsie to keep it in place...that might help too.

I'm sorry things seem to have gone down hill after surgery. I can't imagine how frustrating it is for you.

Sorry I rambled so much! But maybe some of it might help :/ Love you, girl. Praying for you three!

Anne said...

HI, I send prayers and empathy regarding Jonah's feeding issues.
I have read http://ryntales.blogspot.com/
This mom has worked with her daughter's feeding issues due to prematurity and cerebral palsy. She is quite an expert on a variety of diets and she might have some ideas.
God Bless Jonah. Anne

stiner0305 said...

can you give hime his feeding in the bathtub? just an idea :)
he is such a cutie

Krystal said...

Since I have no experience with G-tubes, I'm sending my prayers on your behalf. I think it will get better, but of course there are going to be rough times when everything piles up and makes us feel like we're going to shatter into pieces. Well, that's how I've been feeling this week.

So, I'm talking to God and asking for help for you. You're doing a great job, Patrice. You sound so dedicated in Jonah's wellbeing. I hope you are encouraged in doing the best you can and trusting God for His provisions.

Hugs!

Kelly Carr said...

Hi Pratrice, I just wanted to let you know from a mommy that has a kiddo with a g-tube and trach that things with the feeding tube do get better. I agree with Masto Mama and Cathy on what they had to say.

Owen has been tube fed since 6 months of age and he is now 4. It was a painful and new experience for all of us to get use to. Let Jonah heal and get use to a foreign object that is now in his body. That takes time!

My husband and I were just reading back on his journal entries on O's caringbrige site the other night and we could not believe where we use to be and where we are now. There is HOPE for the future!

I did a Beth Moore Bible study before Owen was born, can't even remember the name of the study but what I do remember that has gotten me through some really hard days/weeks/years is that what we are going through right now is just a small "blip" on our time line here on earth. When we look back (like my husband and I did the other night)we see how God was moving and how we were blessed. It doesn't take the pain/worry away from today, but it is just a blip on the time line. The future hold HOPE and no one can take that from us, no one! I don't know if that helps, maybe not, but it has given me perspective on the hard days!

Hugs and love from Indy
Kelly

Jill said...

I agree with the one commenter about G-tube feeds increasing the amount of reflux. I would absolutely put him on a motility med to help him empty faster which would leave less for him to reflux. Another option would be to change his G tube to a GJ tube which would place anything tube fed into his intestines instead. With the J tube you may find that he is more hungry for the oral feeds. This would allow you to get extra calories into him.

For motility meds we have had a lot of success with Eryped (it is a form of erythromiacin).

Good luck and please email if you think I can help with any of your questions. My son has had a GJ button for about a year.

Jill
jillk77 at aol dot com

Erica said...

I couldn’t not grasp the way you and matt and Jonut are feeling! I'm not there in your daily routine and I sit at my desk and cry, I’m hurting for you! This g tube is making me frustrated; I prayed that everything would go the way you waited it and I’m still praying that prayer every night! IM SO SORRY! And I think a girl’s night is much needed love you, and please call me if you NEED ANYTHING! ~ Erica ~

Wendi Taylor said...

Hon, I don't mean to be harsh, but you really need to try the overnight feeds. The g-tube will help, if you use it the way it is designed to be used. It's scary at first, but like anything else, you'll get used to it.

Rachael said...

Patrice, I have a 24 week preemie. We had a G-tube placed at 11 months. It only takes about 2 weeks for a kid to become tube dependent. If you blouse feed and they are not hungry they will not eat. You have to give him time to get hungry. The G-tube also has an inflatable balloon on the inside of the stomach that takes up room. So they usually won’t take as much as before the surgery.
This web site has been instrumental http://tubefedkids.ning.com/ I have always found it hard, and not fair to tell my baby what and how much he should eat. When we do that we end up with a lot of vomiting. I look at what I eat I am not always hungry when, say my sister is. As far as the calories go, I would base that on how Jonah looks is he healthy having wet diapers staying or close to his curve. Is he developing? The nutritionist are basing there info on a normal 15 month old. Jonah is not burning as many calories as he is not as mobile. I hope I have not over stepped my bounds. I find it very frustrating that the Docs. really don’t have a lot of info on tube dependence or in my case tube weaning. The tube fed kids site has so much wisdom and knowledge. I understand you are dealing with the whole EB issues. I have had to step back and say to my self Jimmie (my son) has to do this by himself. As much as I want to do it for him I can’t (you and I seem a lot a alike. I lost my first baby in April at 23 weeks then had my son in Feb at 24 weeks). I know you have a lot of people with a lot of wisdom here. But if you want to email me racheudaly@yahoo.com
In Christ
Rachael Gravitt
http://rachaelsupdateblog.blogspot.com/

Jennifer said...

I have only one idea for you. I read a blog about a heart baby. He will have to have a transplant at some point. He also has a g-tube and he was also having gushers. His mother made the radical change to feeing him pureed (I sure can't spell that one today....) "REAL" food a while back and he has almost NO gushers now. She also has LOTS of ideas about it. Her blog is www.simmonsfamilyupdate.blogspot.com and her email address (it is listed on the blog so I don't think it is wrong to leave it here) is andreanicolesimmons@hotmail.com I think she would be a good resource for you. You have very real and ligitimate concerns. HONEST you do. I think you will find good answers from those who have been through this. She is one. She has resources too (in Phoenix, sorry) that she has used and she has ideas. I am praying for you daily and sincerely,
Jennifer in Southeast, NC

Gabby said...

I've had 3 stomach tubes in the last 2 years. They're not fun. But what formula are you putting in them? Because in my experience It had to be watered down no matter what it was. I could drink boost and ensure by mouth by put them in my tube and I was dry heaving(I physically can't throw up). To begin with they had to do it VERY slow. Like 5 ccs an HOUR. Then we moved up to 10, ect ect. WHen we finally got up to full feeds I did fine, unless the formula was full strength, then we had to start all over again.... Well, I'm not an expert, or even close. But I do have experience with g tubes. So if you have any more questions or problems, I may be able to help! *Ga5bby

ANewKindOfPerfect said...

It is hard to get used to tube feeding, and for the stomach to tolerate it and like it. My daughter has been tube-fed since she was 10 months old, so for 6 years now.

The best thing I ever EVER did was start her on a blenderized diet through the tube during the day! She gets a mixture that is a recipe from our dietician. It is fruits, meat, veggies, some additives, and pedialyte. She gets this three times a day, 120 ml each time. That's only 4 ounces - you said you are trying to feed him 7.5 ounces at a time? That is a LOT for a tube-feed. My daughter doesn't tolerate a bolus more than 4 ounces ever.

She is on the feeding pump overnight. When I used to worry about her pulling it out, I would make a tape loop and attach it to her diaper. That way if the line got tugged, it wouldn't pull her stomach. It takes quite a bit of force to pull it accidently.

I hope you get a routine down and it gets easier. Did the doctors mention a fundoplication when they put in the g-tube? Knowing that g-tubes usually cause more reflux and Jonah is already a gusher, a fundo might have helped. I am sure they/you had your reasonings though! :)

John and Crystal Pinegar Family said...

I'm so sorry that this is turning out to more stressful for you. But remember that you felt peace before his surgery. That's the Lord's way of telling you it's going to be okay. I hope that you work the bugs out soon and that things get easier. I will pray that they do.

The Shelley Family said...

I read another lady's blog (Andrea Simmons....Simmonsfamilyupdate.blogspot.com) and she has awesome suggestions and knows TONZ about the g-tube!!!
i dont know if u already know her...(she has the link to your blog on her blog)but her son had LOTS of pukes until she switched to blended foods!
I wish u LOTS of luck with the g-tube...hopefully this is just a tiny bump in the road to flawless feedings!
hang in there Patricia! U are an amazing woman and mom and I enjoy reading your blog! We are definately on "Team Jonah"!!!

Anne said...

Patrice, I looked at the simmons family blog .
I think she is really onto something.
Our experience is very different than yours as the digestive needs my son deals with are different. He is an adult with severe cerebral palsy and gastrointestinal needs. But like the simmons family we have found that a vitamix and blending foods replaces the complete reliance on a formula based diet. I keep track of calories and nutritional daily intake on myfooddiary, an online
food diary .in our case we use it to
track calories, protein, etc. intake.
You are going to figure this out and again, having access to info such as the simmons family is just awesome. My only advice re: surgery and the gi track is that it takes time for things to heal and the body to adjust.
Jonah is a beautiful child. Anne

The Oxford Family said...

I hope things get better for you all very soon!

TCSx4 said...

Hi,
I just happened onto your blog while searching another issue with g-tubes, but thought I'd share what we do with our son when he is on continuous feeds at night. Our medical supplier sends us g-tube extensions that are 24 inches long. That is long enough that we can run the tube down from the mic-key button, into the side of his diaper (just under the velcro tabs) and over to the other tab...making like a U in the diaper area. If we have him in a 1 piece sleeper, we have a hole cut out on that side so the tube can come out the side. Another thing is to loop it so that it comes out the leg of his pajamas. These two methods keep the tube well away from his head and neck. As to our feed schedule, Tyler gets 3-150 ml boluses during the day (spaced out about 4 hours and given over a 30 minute period with the gravity method...holding the syringe at about his shoulder seems to give the best flow rate for him to tolerate...he also has the nissen so throwing up is not an issue for us) and he gets 510 mls overnight for around 10 hours. Tyler is also an active sleeper and to date (knock on wood), the only problems we have are with the side port popping open (but we have found that the 24 inch g-tubes can come without side ports, so problem solved). We also vent him before each feeding to make sure all of the air comes out. Lastly, to reduce the volume of formula he needed, we give him 30 calorie per oz formula (Vital Jr) and another heart friend of ours actually gets 45 calories per ounce, so maybe you can talk to the doctor in charge of his feedings and see if maybe a higher calorie formula might be the solution.
Hope this helps,
Tammy Sears (www.carepages.com/carepages/tylercurtis)
tcsears@att.net

Brandie said...

Our son is recovering from spinal meningitis and encephalitis, he is almost 3 months old and was completely tube fed, but is now on bollus feeds as needed. We had to start weaning him off the tube to increase his intake, but that's a fine balance to walk. How much is enough to make sure he is gaining weight and growing vs becoming more dependant on the tube.
With that said, what we are doing is we are splitting the bollus feeds into his naps. So, when he goes to sleep for his first nap we gravity feed the first amount, then repeat with the second and then one over night. This way the amounts are smaller and he is fast asleep (either in my arms or swaddled). I hope that helps