GTUBE – Lauralee and Janice..

[Anonymous]

… or others with the G tube….

As you may know, we are now considering a G tube for Matthew as he has already had his NG tube for about 2 months and Matthew is not doing much better in terms of eating… The doctor said we can discuss it on Tuesday but just wanted to get some info before hand… like how long was the procedure? Is it general anesthesia… how long do they stay in hospital? Is it easy to clean/ not? How do you do the continous feeds at night… with the NG tube he can just pull it and i would just have to put it back but with this one, can he pull the whole thing out? My baby only sleeps on his belly… does that mean he will not be able to sleep on his belly for a while???

Thank you!

[Anonymous]

Hey there Thais. I will answer the questions based on our experience. Of course each case might be handled differently. My son had the PEG procedure done which is done via endoscopy. The entire procedure (placement of the g-tube) took about 15-20 minutes. Christian’s regular PED GI and another GI in her office handled the procedure at the Children’s hospital and it was done under general anesthesia. We are hoping for the placement of the MIC-KEY button after 4 months (this if flush with the skin) and that will make it more user friendly to swim and not have the tube to worry about. The tract itself must heal before this placement can be made.

We stayed in the hospital for a little over 48 hours. After the tube is placed he remained on IV fluids for 24hours so the site itself could begin to heal. The second 24hours we started feeding him via bottle 4oz every 4 hours and what he didn’t take we would “push” through the tube (via machine) and then they started up continuous feeds for overnight and of course to make sure he could handle the feeds. The next morning, before check out – we didn’t need to wait for our equiment (machine/bags/supplies) and such because we had had it since the NG tube a few weeks earlier. Just a note – he was so hungry he downed his bottles as they were offered…after the 24hour starvation – he wanted anything that could be put in his mouth.

The procedure was at 8am and he didn’t really wake up “himself” until around 5pm. He was up and playing at 8pm and crawling the next morning like nothing had happened.

The tube itself is about 8 inches long and we keep it coiled up and taped so he can’t get at it during the day. The ostomy site itself is really easy to clean. We use dove antibacterial soap 4 times per day using guaze and q-tips. The site does have a tendency to ooze so we use 4×4 drain guaze to protect his sensitive skin.

The continuous feed is probably just like your NG tube. We set the machine at 45ml for a dose of 360ml (8hour run) and let it go. The ports are very similar to that of the ng tube and connect the same way – we just TAPE the heck out of it so it doesn’t “backfire” or become disconnected in the middle of the night (this can actually drain the belly contents onto the bed). This happens very rarely.

The easiest way to think of the tube is like a funnel…the cone part is inside the belly and the tube part is outside. It would take a great amount of pulling to get it out. When Christian pulls it – he knows just how far to pull it before it hurts and then moves onto something else. It is possible to pull it out – but VERY unlikely…if you got my visual of the funnel.

Christian is a belly sleeper and he has always slept with his little butt up in the air – allows for perfect tube laying while he sleeps…occassionally it will get kinked – but the machine lets us know and we just reposition everything.

I don’t know if I have helped you or confused you more. Let me know if you have more questions.

A couple of links that I used were:

Good information:

http://www.brightonline.org/id_gtube.html

How to care for:

http://www.cincinnatichildrens.org/health/info/abdomen/home/ g-tube-care.htm

Let me know if I can be of further assistance.

[Anonymous]

Laura

Thank you so much! This is very helpful. I think that we are going to discuss everything on Tuesday… the NG tube is now making Matthew throw up a lot. I think it is because we are still using a thin tube and when he burps or some food comes up it comes up a bit and he gags..he is also taking it out a fair amout.

It seems like the procedure should not be too bad. I was just worried about the belly part because since Matthew has started this, he is sleeping much better (we tried for months and all of the sudden he just positions himself this way, after thinking he could not roll!).

Yes, it seems like it is very much like the NG tube — we do continous feeds at night at 55ml per hour and sometimes 65ml and Matthew handles those pretty well. With the NG, he has never taken it out in the middle of the night but who knows with the other one — he is very wiggley and still sleeps in my room as the machine is on for a fair amount of time. Yes, with the NG tube, it also gets stuck and the alarm goes off and then we just reposition him too.

Our ped said the procedure would be OK — i heard about the 24 hours without food and the doctor was saying that hopefully that will mkae him eat his first meal 🙂 but that he will be miserable if he is hungry. He also said it would be a PEG procedure and that it was quick, but did not realise how quick!!

I made the mistake of going online and research Gtube and they had so many scary things about it… i thought it woudl be best to ask here!

I know that the NG tube has to go soon — he pulls it, it is so tough to get it back in because he just closes his throat adn pushes and he just pulls it constantly and makes it easy for him to throw up. I think that we are ready for the G tube. It seems like it is just as easy as with the NG tube.

Thank you so much… how is Christian doing? I read a while back that he was eating pretty well… hopefully this will continue and maybe the tube can be out shortly!!

[Anonymous]

The g-tube for us has been a god send. I still have my frustrating moments – Christian is a wiggleworm so the kinking of the tube can mean no sleep sometimes. It is great when he has a cold – you know that the mucuous won’t effect the breathing as the nose is no longer plugged with the ng tube. I swear to you and that the pain would hit before he could pull it out – it is not designed to come out and has to removed again surgically.

Christian is not a binky baby – but he took the binky that first 24hours – just the need to suck I think. So he has now had his g-tube since Jan 4th and until say Valentine’s day – he caught a nasty cold – he was eating 3 solid meals (2-4oz) and 3 (4-5oz) bottles during the day and then the continuous at night. The cold and his teething (has 4 pushing through right now) has caused his hypersensitivity to increase and of course the lack of appetite. So we are having a bit of a set back right now. But you know what? I KNOW that he will get his nutrition – because I can push it through the tube. NO MATTER WHERE YOU ARE! We have tube fed at the Zoo, Aquarium, Mall, Busch Gardens – and next month Disney!

I feel like I get new freedom. I know that sounds selfish – but I offer him his foods and if he doesn’t take it – I go into the nursing/changing room and hook him up. The tube runs over 1/2hour to 45 minutes to get the 5oz bottle in and you just walk and push in the stroller – or I carry him in the bjorn. He loves it and there is no stress.

I even learned how to bolus feed through the syringe…hook up a 60ml syringe and slowly over 5-7 minutes pour the 5oz in and he is burped up and ready to go. Love this trick and so does he as he is an impatient – gotta go kind of baby.

We are still working with the feeding therapist and will meet with an OT next week for sensory evaluation and meet with the PEG GI Friday to discuss the button…I am so excited about that – it will offer him more freedom and nothing to pull on. The GI thinks that it might be able to come out around his first birthday…I want to push keeping the button in until I feel comfortable knowing that he is eating enough solids/sippy beverages for adequate nutrition/growth before I give it up. I would hate to have to go through this surgery again in 6 months. If that makes sense.

I know that what you read and see on g-tubes can be frightening – I was scared to death of it…but I sat down and did the pro/con thing and realized that this would allow us to work on FUN feeding (great flavors and textures) while knowing that he would be getting proper hydration over night. It was also better without the NG-tube – I never get the “ohh…what is wrong with your baby” or the pity looks. It also doesn’t hurt his breathing or throat…which is where his hypersensitivity is. Also the websites that I gave you show a more medical description of the tube/procedures so that is alot of what I based my decisions on. It is good to hear the realistic/realtime approach – but some science doesn’t hurt.

Good luck and let me know what you decide or if you have further questions. Don’t feel guilty – you are making the best decision for you son – no matter which route you take.

Let me know if you have further questions.

[Anonymous]

Thanks Laura

What you say makes total sense… i know that the tube is working for you and believe me, the NG tube has been working wonders for us too but it is time to switch… i don´t think it is selfish at all!! I know that when we got the NG tube in it was the correct choice and the best thing for Matthew and I also know that the G tube is necessary because it is going to be a while before he gets better… i am always pretty upbeat about my little one (he really is an angel other than feedings…) but yesterday i doubted myself when i spoke to my husbdan (poor one is in the US and i am in Spain, and i think we are both now feeling the distance!). But i know it is the right decision…

Funny about kinking tube… Matthew is restless and this sometimes happens with the tube, usually around his face… i am an expert at moving him without waking him up!!

On the syringe feedings… ha, i am there too. Actually, we never hook him to the machine during the day. I just syringe everything in…. i do it with 10ml syringes because otherwise i tend to do it too fast, and he just sits on his high chair while i do it, smiling at me most of the time. He is also good at burping now and 5min after giving him a bolus feed he does get the burp out, sometimes a couple.

Thanks again…. will let you know what happens with the ped and sorry about the setback with Christian, hopefully he will be feeling better soon!

[Anonymous]

Hi Thais~
We have the Mic-Key that Laura was talking about. It is pretty much flush with the skin. It is nich in the fact that the extension set locks in. There is a balloon on the inside of the Mic-Key that is filled with water to prevent it from coming out. Samantha sleeps on her stomach and does not seem to mind it. I always tape it when we are out in case that it gets jostled, but when we are at home, I leave it untaped. She does not pull on it, but occasionally I will find her holding up a syringe to it. As for the surgery time and recovery time, she had her fundo done at the same time so I really am not sure. If they do a mic-key, one of the advantages to it is that when you are done with it, the doctor can remove it and it will close on its own. No additional surgery required. I know this sounds strange, but if you would like, I can email you a picture of her Mic-Key. I know it helped me to see other pictures and how it looked on someone else first. Let me know if I can help you any further.

[Anonymous]

Laura,

I was just wondering if you can give a bath and get the tube wet? I know this sounds trivial, but I love bath time with Hailey.

[Anonymous]

Thais – how many ml to do syringe feed Mathew during your bolus feeds? I am trying to stretch my little mans belly and Mathew seems to get alot more food over the night too. Do you run 8 or 10hrs? I see he is just over 6 mos – How much does he weigh? and how tall is he – just curious. Thanks. I too can take a picture of what his tube looks like and email it to you, if you want.

Janice – can you email me a picture with the mic-key – I want to know what it looks like. What I can look forward to. Please? [email protected]

Lori – for the first 3-4 weeks they told us not to submerge him in the bath tub. I used the baby bath on the kitchen counter and sponged him off and cared for the g-site. At about 4 weeks he was back in the big bathtub with his 4 yr old brother – bubbles and all. So we had to wait a bit…but the doctor said that he should be able to hit the pools this summer without a problem. She did indicate that the beach might cause some irritation with the sand freeflowing. Not a silly question at all….god knows I had similar questions. The GI thought I was insane when I typed up all 3 pages of my questions and submitted them to her prior to my appointment so she could fill them out and answer them either at the appt or when we met. That way I wouldn’t forget to ask and have to call the office a hundred times.

[Anonymous]

Janice – I would love to see a picture please. My email is [email protected]. We are going to discuss everything with the ped tomorrow and hopefully having the Gtube will be easier than having the NG tube, which is a pain lately and comes off all of the time! How is Samantha doing? I have been following some of your ER visits etc through carepages… i hope that everyone at home is feeling better from all their illnesses!!

Laura — we are still trying to figure out how much food to get into Matthew to gain the correct amount of weight… one week he gains nothing and another one he gains about 10oz, so we are still not there. At teh beginning, we were doing continous feed at night for 10 hours adn 3 meals a day. We were doing about 350ml overnight and then 3 feeds of 150ml (with some cereal) during the day. The he started totally refusing the bottle, so we had to switch to solids and at the same time, the ped said we wanted to get him on a schedule of 4 meals a day.

This is what we are doing this week –So we are doing breakfast at around 8am or so — he usually will not take anything but we do not do bolus feed then. We wait until noon to get him to be hungry (if that is possible). We then give him some solids and depending how much he takes, we add in some 60-90ml of formula with some duocal. (Max he will have is 4oz of solids though). We then go to 4pm and offer fruit and yogurt. He takes whatever he wants so that if he takes very little, we will see if he is hungry at dinner time. At dinner time, we offer him formula and cereal by spoon and what eh does not take, we put into his tube — usually 150ml of formula with 3 scoops of Duocal. Then we do continous feeds for 4 hours at night at 55ml/hour and stop at 3am and hope he will be hungry by 8am, but he usually is NOT!!

So, this week, he has lost a bit of weight… because we have been trying to see if he would get hungry on his own.

The previous week, we were doing whatever he would take for breakfast, lunch and afternoon snack and adding 120ml of formula…and if he had nothing, then we would do 150ml of formula with 3 scoops of Duocal and he gained too much and we could not get him to get hungry!!

So, i think Christian may be taking more calories? Depends on how much polycose you are using i guess. We are using a lot of Duocal for Matthew right now.

Hope this helps… it is confusing but he is so irregular that we still have not figured out how to get him to eat or get hungry or gain properly…

I would love the pictures too please…

[Anonymous]

I hate to ask, but I would also love to see some pictures. I’m pretty sure that a g-tube is in our soon-to-be future, and I’m not sure if the fear comes from not knowing what to expect. My husband thought it would be great to see what it looks like.

My address is: [email protected]

Thanks.

[Anonymous]

Janice

I was running out this morning to a doc appointment…. forgot to mention that i think it is great Samantha just holds a syringe from time to time next to the button!!! They learn quickly, these babies.

[Anonymous]

Laura — sorry i forgot to say that Matthew is about 16pounds or so now and his height was approximately 27 in i think at his 6th month appointment

[Anonymous]

Thais,

I think we’re headed in the same direction as you in regards to the g-tube. I’m holding off as long as I can, but little Noah is getting harder and harder to feed these days. I think the older they get, the more difficult it is to feed a baby that doesnt want to eat.

I hope your appt. goes well tomorrow. Please let us posted.

[Anonymous]

Lisa

I know. They get older and they want their ways… the NG tube has been key for us for a long time but we have to move on now… we are so used to it by now, that really, as Laura said, it gives you great freedom because you can really feed your baby anywhere and not worry about him stressing and not eating etc etc.

I hope that you do not get a tube at all, but if you do, it is really not that bad to handle and you will have a happy, nourished baby and eating will happen at his own pace i think.

[Anonymous]

Lisa,

Are you guys considering the g-tube again? I’m pretty sure we’re going to end up with one… Hailey is barely eating again, and refusing meds (so at least with the tube we would be able to get the meds in). Funny, now that I’ve started to accept it, we saw a specialist on Friday who said that “no doctor would put a g-tube into a baby who has been consistently growing at the 50th percentile”. Go figure…

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