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Questions about G-button feeding


 
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momuveight
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Location: DonnerPartywasHere

PostPosted: November 06 2007, 4:24 PM    Post subject:
Questions about G-button feeding
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I am looking for information from some of the other parents because I am not too sure if we are doing everything correctly. We do get another skilled nursing visit on Thursday that should help but I am wondering how other parents handled these situations.

The pump malfunctions and we don't find out until some hours later. He is sleeping with me and from the numbers I can see in the dark it looked fine but later found that the milk hadn't emptied from the bag. He only got half of what he needed and we had to start our bolus feeds for the day and couldn't make it up. What else could we have done?

He is right at 95-100 ccs on bolus feeds and a rate of 35 ccs per hour at night. He is supposed to be at 120 and 40 but his stomach can not handle this rate. He retches and is very uncomfortable if we try to push more. I don't want to put him on Reglan, is there any other medications we could ask the doctor for instead?

It has been two weeks since surgery and so far it does not seem easier to me and he has not regained his weight yet. He is holding steady around twelve pounds and was 12lbs 4 ounces before surgery.

It takes twenty minutes to bolus and then another twenty of venting.

Any tips on how to feed when out and about? It is not going well so far. We have to drive seventy miles to the city for appointments and when we are there we have to feed him in the car (getting too cold) or inside of public places. It is really awkward and people stare. We are trying to be discreet but honestly we are all thumbs at this. He is in the stroller but it does not recline at the right angle and then if we use the carseat he is too scrunched up.

We really want to travel over the holidays but need to feel confident of his ability to eat. What do we do about the IV pole for car trips and hotel stays? We barely have room for the kids in the van now.

Thanks for any input.

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lespring
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PostPosted: November 06 2007, 5:14 PM    Post subject:
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I'll try to help you with some of your questions. Many kids don't handle bolus feeds well unless they've had a nissen done. (it's something you want to avoid if possible but down the road may have to think about.) I found it was easier to just hook her up to the pump and spread a feeding over 30 minutes instead of 20, and go about my business! The doctor will give you a rate, but ultimately it's up to you to decide how fast he can take a feed. If it's too fast for him, slow it down.

The venting will get better as his body adjust to the anatomical change. Is he able to burp? (he didn't have a nissen right? Just the tube?) Also, you can vent him for a few minutes...the do something else then vent him again. I doesn't have to be a continuous vent. In between if you see him fussing, open it up for a couple seconds and let him vent.

Your pump issues: Is it setting off any alarms? Sounds like it got occluded (kinked tubing or something?) but it should set off an alarm. Maybe you got a faulty pump???? The only problems we had with pumps were things like the tube getting pulled out and formula pouring everywhere and we didn't know it. Or once we had a malfunctioning machine that would sound alarms for occlusions every 10 minutes when there wasn't one. Not fun at night when you're trying to sleep!

There are travel pumps that you can get. (you'd have to find out if your insurance will cover them.) That are a little smaller, can be put in a bag that is slung over your shoulder or in the bottom of a stroller, and the tubing runs to that for a bolus feed. But we got really good at hanging a bag from the clothing hanger thingy over the car door and feeding her while we drove. Also...if feedings are 1/2 hour late it's not that big of a deal.

It took me awhile to figure out the logistics of feeding with a big syringe in public. I found a purse-like bag that would hold two 60cc syringes and a bottle of formula.

1) we'd always sit in a booth.
2)I'd keep her in the car seat, hook up the tube (that's the great thing about tube feeding, they can be laying flat and sound asleep to feed them!)
3) I'd open the bottle of formula down on the seat, below the table, and suck up the formula into the syringe. Then I'd hook it to her tube and slowly push the feeding while we ate our meal. We weren't lucky enough to be able to have one of those cool travel pumps!!!

You don't need an IV pole. You can hang that bag from anywhere...the top of a door, the clothes hanger thingy in the car. In our living room we had a nail on the wall above her swing that we hung it on. Also one above her high chair, etc. In hotel rooms they have hooks on the walls for coats and stuff, they are perfect places to hang a feeding bag.

Sometimes it's hard to see through the fog, but alot of the logistical issues that seem really difficult are simple to solve. But when you're tired and mentally drained it's hard to think of alternative ideas (like hanging it from the car thing.) And when you're new at everything, and the doctor says, "he needs to eat "x" number of minutes at "x" cc per hour, well you feel like you're doing something wrong if you stray from that. Don't worry....every kid handles the feedings differently.

Also, try running the tube down his leg and out the cuff of his pants for easy access so you don't have to undo him to get to it. If the tube is too short you can a) leave an extention on when you're out and about or b) ask the surgeon to give you a longer tube.

I wish I lived near you. Years ago a friend of mine's new baby got a tube. (she didn't have DS...just at typical baby who refused to eat.) On the phone she seemed like things were fine. Then one day after about 3 weeks she called in in tears and sounded like she was in a mushy emotional puddle on the floor. I went over there to help her out a bit, and discovered that the nurse hadn't shown them the most basic of things, and she was afraid to improvise.

I picked the baby up out of the crib (she was about 6 months old at the time) and was playing with her, swinging her around, tickling her belly. Just doing normal play with the 6 month old baby. All while her mom was crying. And then I realized she was silent. I turned to see her staring. I thought I'd done something wrong to scare her or something and must have made a face to indicate it. "No...you're fine...I've just been afraid to pick her up and handle her like that. I'm afraid I'm going to hurt her belly, or catch the tube on something." Here she was treating the baby like a fragile egg, afraid she was going to break.

She was HUGELY relaxed after that. She thought she was so fragile when really she wasn't. Her outlook on things improved ALOT!

She also learned something you may not have been told yet. Where the stoma is, the nerve endings have been severed. There is no sensation right there at the site (Do you have a c-section scar? Same type of thing. There is sensation around it, but not right at it.) Once he's fully healed (and he should be almost there) it would have to get pulled on pretty hard for it to hurt. Angela was able to pull out fully-inflated buttons and never make a sound.

Hang in there, and don't be afraid to PM one of us if you're really stuck. I pretty much live online so I'm easy to reach. LOL

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pmjc48
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PostPosted: November 07 2007, 3:03 AM    Post subject:
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Nicky has been totally tube fed since he was six and he he is now 20. I have fed him in many different places, restaurants, stores, zoos, pool, on ships, on planes etc and in different countries too. Yes, people sometimes stare but so what? I am sure I would have started too if I had seen someone having a tube feed before Nicky had his, it doesn't bother Nicky so why should it bother me. When we are out in restaurants for example I don't take his pump but give him a bolus gravity feed instead, it can be done discreetly and ofter people don't realize what I am doing. Its a bit like breast feeding - you can show off to everyone or do it discreetly. Having a Mic-key has not stopped Nicky doing anything, he goes swimming, horse riding, sleeps on his front. We even take him to the beach but just take some clean water with us to pour over the stoma before we leave the beach to get rid of the sand. Smile
Without his gastrostomy Nick would not be alive as with his medical problems there is no other way to feed him. Before he had it he was very malnourished and underweight but now is the right weight for his height. I love his gastrostomy Very Happy
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Tigger
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PostPosted: November 07 2007, 3:44 AM    Post subject:
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I've got to admit that I have had to "think outside the box" since Talitha was born. She has been tube fed since birth and had the g-tube now for nearly 15 months. She is on a pump overnight and 3 bolus feeds during the day. For a long time I couldn't feed her more than 100ml at a time on a bolus feed because she just couldn't handle it. Fairly recently I have managed to get them up to 120ml. Overnight she has 600ml at 65ml per hour. It took a long time to work up to that rate.

I vent before a feed and then as long as I don't get any air in there I don't vent again unless she has a belly ache. I hope they showed you how to prime the tubing so no air gets in.
In the car I attach the bag to a hook on the handle thing above the side door. I got a packet of S hooks from the hardware shop. Talitha's pump will run on battery for up to 8 hours and in my van I attach it to the metal leg of the seat. In my hubby's car (much more modern) I just sit it on the floor and make sure the tubing isn't kinked.

I keep water for flushing, syringes etc in the nappy bag and feed Talitha wherever we are. If people are staring I offer to show them what I am doing, then they either get an education or get embarrassed and turn away. You get used to it. You will get better at it too and not so worried about doing everything right.

In hotels etc having an S hook means you will always be able to hang a bag - from a bedhead, drawer handle, lamp pole...... The pump will pump no matter where it is as long as the tubing is not kinked.

Can't think of anything else now but I do this day and night so if you have any more questions please feel free to post or PM or email me and I will be happy to make suggestions.

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Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14
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momuveight
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PostPosted: November 07 2007, 9:49 AM    Post subject:
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He did have the fundo, I really didn't understand this operation but they said it was necessary because of his reflux. It is scary to see him retch and I didn't know he wouldn't be able to throw up or burp. I am getting used to it.

He also had the operation to increase his gastric empty, all of this in addition to the Mickey.

He did better yesterday and we got a replacement pump. I am going to see about getting a portable for travel.

I want to increase his feeds but it is slow going.

I am still having a hard time knowing that this was done to him and that he can't eat orally. He tries but only gets a few sips down.

I am scared of the stoma. I have never handled medical things well and this is really hard for me to deal with. I think I am going to pass out when we have to change the button.

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lespring
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PostPosted: November 07 2007, 9:57 AM    Post subject:
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Angela has a nissen as well. I have a diagram of it somewhere...Here's a link to it, with my not so very good drawings. LOL http://www.downsyn.com/phpbb2/viewtopic.php?t=10855&highlight=nissen+fundoplycation

Ok, so that explains why you're having to vent more. He will eventually be able to burp. It takes anywhere from 3 months to a year, but usually it's just a matter of once all the post-op internal swelling goes down.

He CAN eat orally with a nissen! BUT, watch closely. Angela was completely no oral feeds until about 4 months after surgery because of post operative swelling that caused everything to completely close so nothing could make it down. Give it time, have patience...hang in there!

The first time I had to change the tube, I made my then 11 year old son hold Angela's hands out of the way. I was a wreck about it, he was like, "So what's so bad about that?" I was like, "Umm...hello! That hole goes right into her stomach!" and he replied with "Cool!!!!"

Once I did it the first time, and realized it was nothing, it wasn't a problem.

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momuveight
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PostPosted: November 07 2007, 12:14 PM    Post subject:
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Leah, thanks, that explains things much better. I do offer him the bottle because he acts like he wants it but will tire after just a few minutes. I didn't know he could have swelling like you describe but it makes a lot of sense.

He still has leaking around the stoma. Not while feeding but later when I go to change his diaper there will be crusty stuff around the stoma to clean too. Doctor said this is normal but I'm not sure how much or for how long this will continue. They said clean once a day but I don't want to see him with crusties on him.

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momuveight
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PostPosted: November 07 2007, 12:20 PM    Post subject:
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Tigger wrote:
. For a long time I couldn't feed her more than 100ml at a time on a bolus feed because she just couldn't handle it. Fairly recently I have managed to get them up to 120ml. Overnight she has 600ml at 65ml per hour. It took a long time to work up to that rate.

to make suggestions.


This is really helpful to know because I was feeling bad that we weren't making the goal set by the nutritionist. I somehow thought once surgery was done we would be able to get all his food into him. They want him at 120cc eight times a day or the remainder in the pump. He gets to a point and will begin to cry and if you don't stop then it is very obvious he is in pain and then you have to vent some out. We have learned to watch his expressions and when he begins to pout or grimace we stop the feed.

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lespring
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PostPosted: November 07 2007, 12:23 PM    Post subject:
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Ok, a stoma care trick:

Call your medical supply company and tell them you need "2x2 IV Gauze". These are little 2x2 squares that have a slit cut in them. Put it at the base of the tube, against his skin, with the tube through the slit. Then put a piece of tape across the slit so it can't fall off. This will absorb the leakage so it doesn't turn crusty. If his skin gets dry and irritate (because the leakage is acidic) you can try a little aquaphore around the stoma site.

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lespring
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PostPosted: November 07 2007, 12:25 PM    Post subject:
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Also...remember that the nissen completely changed his anatomy. He could still be refluxing, but it's going up into that "donut" the nissen created, which puts pressure on the diaphragm and the esophagus. ALSO...did they tell you that for several months his stomach will not be able to hold as much as it should because the nissen makes the stomach smaller, decreasing capacity.

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momuveight
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PostPosted: November 07 2007, 10:33 PM    Post subject:
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How do I convince the surgeon to write me a script for the little portable pumps that come in a backpack so we can get around easier?

How do you do bolus feeds with a pump? I have developed terrible tendinitis and can barely change diapers or anything else.

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lespring
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PostPosted: November 07 2007, 11:29 PM    Post subject:
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Yes, you can bolus feed with the pump. You just set it at a faster rate. So lets say you wanted the feeding to last 30 minutes, figure that out in CC's (I don't remember how to do that, sorry Crying or Very sad ) and set the pump accordingly.

Lets see...convincing the doctor to write script for a portable shouldn't be a problem. Just tell him you want the script. The problem will be getting insurance to cover it, which is a whole different ball game!

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