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Discussion Starter #1
Okay, first off, when I "got" my daughter I had, literally, two days "training" regarding her care. We were SO eager to get her out of foster care (she's our niece, taken from her mother b/c of SEVERE/LIFE THREATENING neglect) that we just nodded and smiled and figured we'd figure it out. That was nine months ago. So - please don't flame me for the ignorance I'm about to show. I just did what I had to do and, really, I bluffed so she could be with family.<br><br>
Since then she's had three surgeries. She's grown, learned to talk (well, you know - babble with intent), gained weight - blah blah blah. And yet. I'm SO freaking CLUELESS!!!! So, to the question:<br><br>
DD's been on Elecare since we got her. We've upped the "dose" - whatever that means - redone the "calculations" - but NO ONE can really tell us the best way to feed this child: NO ONE. It's like nobody's ever made the recipe for this freakin' formula (that everyone declares is the one that she HAS to have).<br><br>
DD had a nissen fundo last Thursday and wasn't able to empty her stomach until Monday. The docs said that we would work her up to the amount of formula that she was getting before the surgery before they discharged us. And then, POOF, they came in and told us we could go home. Right then. I was thrilled. It was dh's birthday. We could drive home to Memphis from Nashville in time for me to cook him a birthday steak. Yahoo. And it was great.<br><br>
NOW, she's retching (and I hear she'll be doing that for the rest of her life), turning blue with retching. She's whining when her belly gets full (she's pretty nonverbal, so she can't/won't actually tell me if she's hurting). Her eyes are dilated. And then she's sweet as pie, happy as a clam, asking for Barney and her "get well" balloon.<br><br>
So, what the hell am I supposed to feed this child? I've never understood the dosage or the mixing. Here's what we've been doing, any input on this will be appreciated:<br><blockquote><p>We give her 1 2/3 cup of Elecare (From the can: 5FL oz provices 100 calories when diluted to 20CAL/fl oz - WHAT DOES THIS MEAN???????) + 40 ML of Microlipid + However much water makes the entire yield 36 oz. We then (before surgery) fed her on 85ml/hr during nap (like from 10:30am to about 1:30) and then the balance overnight at the same rate. (We use a Kangaroo pump.) We've monkeyed around with the rate per hour to try to reduce the vomiting which, now, after the nissen, hopefully, won't be a problem, and landed at 85ml.</p></blockquote>
Now, they drew 52ml/hr out of the air (basing it on the 36oz total volume) and told me to bolus feed her every three hours for half an hour. She's a VERY active 2yo - I don't know how to make her sit still or manage my life this way. I tried pushing (with a syringe, cause I'm IGNORANT) 52ml over a quarter of an hour, and she did fine. For a while. And then the retching started.<br><br>
Only one poop since we got home, by the way, "encouraged" by a laxative.<br><br>
Okay, I'm gonna stop rambling. I AM TOTALLY FREAKING OUT. I DON'T KNOW WHAT TO DO AND I CAN'T GET ANY ADVICE FROM THE EXPERTS. I'm a smart person, but I just don't get it. Please, please help me. I'm feeling very desperate.
 

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I would start on the pester the GI mode if I were you.<br><br>
Call the GI on call right now and tell them she is retching and you are worried.<br><br>
Pester the snot out of them until they listen.
 

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Discussion Starter #3
Unfortunately they're (the GIs) in Nashville at Vandy and I haven't gotten a response from her GI in a week AND there's not GI in Memphis that will take her on because of insurance and/or lack of familiarity with her condition.
 

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That's crap. SOMEONE has to know how to feed your daughter. Call every freaking hour all day long, every day of the week. CALL CALL CALL. Don't let them shove you out the door like this.
 

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I vote for the pester a GI as well. Also, is there a nutritionist on staff at your GI? They should really be able to tell you EXACTLY how to mix the formula. Dd was on a horrific concoction which included canola oil and calorie enhancer plus high-calorie baby formula, and we had a recipe all spelled out for us in exact measurements. If it's measured out wrong, it's going to really irritate/upset her stomach, especially right after surgery.<br><br>
In the meantime, though, it sounds like you may need to back off the rate. Dd has had a g-tube for 5 years, and was on various formulas for about 3 1/2 of them. She does not have a Nissen, so I'm not experienced with that. I will say, though, that even with a kid who eats plenty by mouth, we can still only run her overnight water feed at 75ml/hr. When it was formula, we were around 60, and when she was on all formula, it was lower than that.<br><br>
We do water syringe push boluses and she can tolerate them easily, but I know most kids can't. In fact, the nurses on the floor are always shocked to see us doing it!<br><br>
I know you said you have the Kangaroo -- do you have the backpack carrier thingy that goes with it? If you do, you can have her wear that, connect her up to the tube, and kind of hang out and play while she gets the bolus. We also used to connect dd up, then put her in the stroller and go for a walk, which prevented her from wiggling too much. Not doable every day, of course, but something to try once in a while.<br><br>
Hope that helps a little!
 

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Discussion Starter #6
Thanks so much. Tonight, for the overnight feed, we've reduced the volume of the formula in that we've used one fewer 1/3 cup and reduced the water to yield 24 oz, so that we can get in the entire calorie amount, without giving her too much liquid volume. I have NO IDEA if this is correct or not. Further, we've reduced the rate back to the 52ml/hr.<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>snuggly mama</strong> <a href="/community/forum/post/10316817"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">do you have the backpack carrier thingy that goes with it? If you do, you can have her wear that, connect her up to the tube, and kind of hang out and play while she gets the bolus.</div>
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The backpack is too big for her to carry right now. She's 21lbs., and I think that's probably about what the backpack weighs. We'd love a new pump, but this one is paid for, so I don't know if insurance is going to pay for another.
 

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go to this site<br><br><a href="http://www.infantrefluxdisease.com" target="_blank">www.infantrefluxdisease.com</a> or <a href="http://www.momswearingpuke.com" target="_blank">www.momswearingpuke.com</a><br><br>
and post in the tube feeding or fundo forums. Retching is common after a nissan. They will be able to really really help you there, with everything from the retching, to the tube feeding. and while they arnt really ap mamas, they do know their stuff when it comes to stuff like this.
 

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Discussion Starter #8
At one point our (ridiculously young/naive, but very sweet) nutritionist said something about being careful with the water/formula mix. Does anyone know anything about the effectiveness of changing up that ratio?
 

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if you mix too much water, you wont get enough cals, if you use too little she can become dehydrated and it can make her sick. If her weight is good, they will normally have you mix it the way it is directed...if she is having weight problems, they usually have you use a bit more powder (adds more cals)<br><br>
like when it says 5fl oz makes 100 cals, it is 20 cals per oz, and that is prob the standard mixing.
 

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First off, that would confuse me as well! Talk about insanely complex.<br><br>
Pester the GI for certain. In the mean time, you really shouldn't mess with the ratio of formula/water without talking to the dietician. I am pretty surprised that they don't have a 2yr old on 30kcal/oz as I think pretty much all toddler formulas are 30kcal/oz if not more. It might be worth mentioning because that would cut down on her volume tremendously.<br><br>
Second, the kangaroo pump is going to be a nightmare with a 2yr old. But, having an IV pole would really help. I would also ask the GI if there's any organization that helps people get feeding supplies or if there's anyway that you could get a Zevex Infinity. Is it possible to sell your kangaroo to the DME and have them get you a Zevex?<br><br>
You are going to have to read her cues. 85ml/hr sounds extremely fast to me. For comparison, my dd2 receives 40ml/hr and cannot tolerate more. Did they have her on continuous feeds 24hrs a day after the surgery? How did they go about increasing her to the point you're at now? It might be in your best interest to go to continuous feeds 24/7 and slowly work up to a bolus feed from there in the span of 10 days or so that way there's less stress on her stomach. But yeah, her bolus feeds, at least for now will probably need to be at least 30min-1hr. My dd2 is all over the place. We have a little wagon on wheels and she crawls throughout the house and her pump/wagon trail behind her. It works well for us as I prefer not to have an IV pole in the house (makes it feel too much like a hospital for me).
 

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Discussion Starter #11
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<div>Originally Posted by <strong>irangel</strong> <a href="/community/forum/post/10317211"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">you really shouldn't mess with the ratio of formula/water without talking to the dietician. I am pretty surprised that they don't have a 2yr old on 30kcal/oz as I think pretty much all toddler formulas are 30kcal/oz if not more.</div>
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I think the dietician is one of the problems, actually. Sweet, sweet, but not really very smart. DH said last night that he thinks that we could have told her that we wanted to feed dd granola and she'd have come up with a "formula" for us to do that. I think, for one thing, we've just got to find another person on that front.<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>irangel</strong> <a href="/community/forum/post/10317211"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Did they have her on continuous feeds 24hrs a day after the surgery? How did they go about increasing her to the point you're at now? It might be in your best interest to go to continuous feeds 24/7 and slowly work up to a bolus feed from there in the span of 10 days or so that way there's less stress on her stomach. But yeah, her bolus feeds, at least for now will probably need to be at least 30min-1hr.</div>
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I actually think that they rushed us out of the hospital because either a) they knew I was in Nashville alone and that it was dh's birthday, or b) the hospital was full and they needed the room (the more I think about this, the more it feels true, though I know I'm feeling paranoid, but when they were rolling her out to have the surgery in the first place some amazon administrator woman stopped them in the hall to say that they couldn't proceed b/c there was "no room in the inn" - our doc finagled his way into going ahead a few hours later since we'd driven 3 hours for the surgery.). Maybe it was the insurance company.<br><br>
Anyway, while we were there, they worked her up on pedialyte for two days, each time having to stop because of the retching. She finally held it together on Sunday night and they started formula on Monday morning at 40ml/hr. We did that for about 3 hours - and then we were discharged. I was shocked, shocked.<br><br>
This morning she woke up retching AGAIN. I had stopped her feeds at 4am and she's still retching at 7:30. I checked her residuals and she had about 60ml still in her stomach (and some air). I'm worried that she's not processing food well, that there was something else that was causing her to vomit constantly, that the nissen was the wrong decision. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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Hate to say it, but you were probably discharged because of space limits -- it's happened to us before, and it stinks.<br><br>
I'm sure you know this already, but pedialyte empties from the stomach much differently than formula, so even if she was doing well on that, the formula is a whole different issue.<br><br>
Can you get a referral to a nutritionist who is knowledgeable about tube feeds and your dd's formula in particular? I think that some of them are just not as well-informed about certain things. Dd's transplant nutritionist was great about formula issues, but doesn't have a clue about helping me figure out oral intake.<br><br>
It sounds like this is a really stressful situation right now. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Does the GI have a PA that he works with?<br><br>
I don't know anything about tube feeding, but would like to offer <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Definitely call the GI. YOu do know that the formula should be mixed with a digital gram scale, yes? SOmeone has mentioned that it needs to be very exact, right? And yes, at her age, she should be getting Elecare mixed to a 30 cal. concentration...Both are on the back of the label. If she's only getting 36 ounces, I'd imagine that you are doing 30 cal concentration (IIRC< its 5 fl. ounces to 3 scoops of formula which is 28.2 grams). AS for tube vs. bolus, thats up to the dr. but it sounds like longer tube feeds until she stops retching are in order. Can you ask for a different pump? I hear the Kangaroo is a PITB, but the Zevex Entralite or INfinity w/ backpack could just be carried with her while she adjusts to feeding volumes. The Entralite only weighs like 14 ounces. Its what we're planning to beg for with DD when we get her tube any day. Oh, and call and harass. I drive 2.5 hours to our GIs. Last time, I refused to leave the office till I got an answer. Now I have the name of a nurse who will hook me up with info when the rest of the office sucks. Just keep calling....Eventually, they have to give in and answer.<br><br>
ETA: I do know some kids can't tolerate full concentration formula, especially those with reflux, fundo. etc. Has anyone talked about changing out to a g-j tube so its not such an issue or reducing concentration temporarily? YOu really need to harass the GI non-stop!!
 

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<div>Originally Posted by <strong>kalkiwendy</strong> <a href="/community/forum/post/10318859"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Anyway, while we were there, they worked her up on pedialyte for two days, each time having to stop because of the retching. She finally held it together on Sunday night and they started formula on Monday morning at 40ml/hr. We did that for about 3 hours - and then we were discharged. I was shocked, shocked.<br><br>
This morning she woke up retching AGAIN. I had stopped her feeds at 4am and she's still retching at 7:30. I checked her residuals and she had about 60ml still in her stomach (and some air). I'm worried that she's not processing food well, that there was something else that was causing her to vomit constantly, that the nissen was the wrong decision. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
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Starting at 40ml/hr was too high. After my dd2's surgeries they start out at half that speed and work up. Even now with her on continuous feeds 24/7 she's only getting 40ml/hr.<br><br>
Personally. I would back down to 30ml/hr. Even though it's not full feeds you can work in that direction. If 30ml/hr improves things then slowly work up from there. In the hospital this last time we were going up by 1ml every 8hrs because that was all dd2 would tolerate. It also takes about 6hrs of one speed before we can say "yes, she's tolerating this".<br><br>
Work her up to full feeds 24/7 and then slowly either increase the speed further to get her to something like 18hrs on, 6hrs off or if you want to go to boluses start increasing the speed so she gets a feed for 2hrs and then has 1hr break. Then gets a feed for 2hrs and has a 1hr break. Slowly work up to 30min feeds. Ideally the process should take as long as your daughter needs it to take. That could be 10 days, it could be that she tolerates it well and you can increase to boluses in 3 days.<br><br>
That's what I would do. Certainly not what you have to do. This last hospital stay we had was partially because dd2 wasn't tolerating feeds. Her nissen slipped and she was coughing and retching constantly so we had to figure out a way to get food into her without her "eyes popping out" as the GI put it. She now has a gj-button that we had put in this week and that seems to be going much smoother BUT we did have her on 40ml/hr 24/7 through her g-tube and she was tolerating that.
 

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Discussion Starter #16
Thanks y'all for the input. I am definitely going to decrease the ml/hr. AND call the doc - as soon as the swelling in my mouth goes down (I just had some dental work done <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">)
 

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they probably did rush you out cause of bed space. During the winter there is often "no room." But anyhow...<br><br>
I would worry most about fluid requirement. For example, Linden needs 44 oz a day. He doesn't need that much formula (he would get waaaaaay too many calories). So when we did formula, we just knew how many scoops to do, and how much water, then dumped them both into a pitcher and bolused him throughout the day. I'm surprised that no one did an emptying scan before the fundo. Linden is getting one done soon and he's not even a puker (they say he must have reflux, I disagree and won't do a fundo unless they can prove that he has uncontrolable reflux that's hurting his lungs... it's the pulmo that's insisting on an upper gi and emptying scan). I'd ask someone, anyone, to ask for one of these. The little info sheet they gave us to prepare for it says that it takes 2 hours and uses 8 oz of formula (this is what they ask you to bring, I don't know if they use all of it). And I know that pretty much any dr can order it, cause our pulmo said that he wanted to order it (he thinks GI here sucks, and I have to agree, lol). So if you have a good relationship with your ped, you could ask them to order a gastric emptying scan. Maybe that way you can just bypass the whole GI thing.<br><br>
As for the getting around with the pump, some people use a little radioflyer push toy so the kid can push it around. We have the zevex, but Linden won't use the back pack, so I just follow him wherever he goes (he it mobile, but doesn't go far or so much so that makes it doable for us).
 

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Discussion Starter #18
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<div>Originally Posted by <strong>MotherWhimsey</strong> <a href="/community/forum/post/10324094"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I'm surprised that no one did an emptying scan before the fundo.</div>
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Yeah, that seems strange to me too, now. I am feeling really sh***y about having made this decision for her. I thought I'd researched everything about it, and now I'm feeling like I should have asked more questions. It's just that EVERYBODY that was looking at her asked why a fundo hadn't ALREADY been done.<br><br>
So, I'll definitely ask for and emptying scan - asap.<br><br>
Do y'all use a GI in K-ville or at Vandy?
 

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Before this week, I would have told you to get to Atlanta and told you the names of some good GI's.<br><br>
But they are not that hot here either.<br><br>
Can you call Cincinnati Childrens and see if you can get seen by their GI department? They are the best of the best.
 

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Did you guys try any emptying meds before the fundo? Lily has a motility issue where she is not able to empty quickly and she also cannot tollerate more than 4 oz over about an hour period or 2 oz bolus. The best med we found for her was Bethanechol. It worked WONDERS on helping her empty faster. She stopped puking at every feeding and as of right now, hasn't puked in about a month from feedings.
 
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