G-tube feedings and burp tube ?'s

[Guest guest]

Sorry I have no advice on this one. Just letting you know I am thinking of your family, and will continue to pray. Hopefully, all of this will get better with time. I am sure it is hard on you not being able to nurse anymore. I hated stopping Grace, but realized it was not my fault and was helping her by doing so. Best wishes.

[Guest guest]

We have been having a rough time getting Zipporrah used to her feedings since the placement. Her reflux is the biggest issue. Since she has the nissen she does not actually get anything out, but she has dry heaves and tummy lurching frequently. We started on 24 hour feeds (rate of 46)and she did well with that. But when we started trying to change her to 12 hours per night (rate 60) and 3 three-hour feedings during the day (rate of 63) she started having problems. After an hour or so during the day she would start heaving plus during the breaks she would be extra hungry because we had to stop the feeding for 15 min. intervals due to the heaving. It has been REAL FUN keeping tract of how long she is on it and how much more she needs when we have to stop frequently. Plus anytime she tries to nurse she almost always immediately gags and heaves. When she doesn't and actually nurses for a minute or two then she gets real gunky and phlegmy (We know now oral feedings aren't too good for her!) THREE QUESTIONS... How long did it take your infants (Zipporrah is 6 months) to transition to bolus feedings? (The nurse thought within a month to be at step 4 and we are having trouble with step two.) How often do you recommend using the burp tube? After each feeding? Will this help alm the tummy? (Zipporrah can't seem to burp any longer and she has always been a VERY burpy baby.) Should I worry about her excessive phlegm not coming out anymore? (I can still hear lots of phlegm when she is heaving, but it doesn't come out anymore and I am worried where it is going other than the tummy.) Any help appreciated. The surgeon's told me her tummy should calm down and stretch allowing more food to be held-that it just takes time, but I worry about you that have continued to have problems AFTER a nissen with reflux. They took her off Prilosec immediately when placing the tube as well. I just want to make sure we are doing everything I can to help her.Darla: mommy to: Asenath (4) Mito, CNS Vasculitis of the brain, strokes, SLE's, migraines, seizures, g-tube, disautonomia issues (low temp reading, apnea, irregular breathing...), hypotonia, heat/exercise intolerance, oxygen use, asthma, some sensory integration issues... Zipporrah, (5 mon.) Mito, SLE's, sensory integration disorder, GERD, g-tube, mild tracheomalacia, tracheal ring, oxygen use, asthma, disautonomia issues (temperature control issues, apnea, low temp reading, breathing irregularities...) plus-Luke, Leah, Rachael, Isaac, Tirzah, Kezia, and MarquisGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Billy did not have the tube as an infant but was having troubles

switching from drip to bolus. They did a study to see how his

stomach was working. If he lays on his right side he has no reflux

and empties his stomach, if he lays on his left side he has no reflux

and does not empty his stomach, if he lays on his back or his front

or sits up or tilts back he has reflux. Since you have the nissan

you don't have the throw up but could the position changes cause

pressure which gags her? Or maybe slows the stomach from emptying?

We stopped working on switching him over to bolus as it was too hard

on him.

Twana

[Guest guest]

Darla,

Sorry to hear things are still not settling down for all of you. I remember when Audrey got her G-tube they wanted her fed around the clock without any breaks. They had her taking in around 850 calories a day. Amie threw a fit and said there was no way Audrey could take in that much so the started cutting it down. Now she takes in approximately 550 calories daily. She was on a continous feeding all night at 30 cc's per hour but she would wiggle herself flat (she hated the Tucker sling) and then her lungs would sound all gunky by morning. So, now she is only gettin 12 cc's per hour at night and they make up the rest with feeds during the day. She can tolerate 60 cc's an hour now, but it took quite a while before they could do that. She was on continuous feeds for I think around 6 weeks. As for the breastfeeding, someone else mentioned that you might have to stop and I know that will upset you it you have to, but you have given her six months worth of very good nutrition and that is wonderful. When Amie had to stop nursing Audrey it broke her heart, but she knew it was the best thing for Audrey. Audrey just couldn't take in enough calories to sustain herself. Amie just called while I was writing this and she said if Porrah's reflux is that bad you will probably have to slow the feedings down. Also, is she on any meds for the reflux. You will probably just have to experiment with her to see what she can tolerate. I hope that things will smooth out for you all soon.

Darla, take care of yourself and try to get some rest for yourself. It is very important that you stay healthy also.

Kathy, grandma to Audrey, 32 m0s

[Guest guest]

Darla,

Caeden just got his G-tube in Feb. and we still don't have him that

high of a rate. First of all we burp him before each use and if he

looks distended. Then we hook him up 3 times a day at a rate of 55

with 5-6 oz depending on how he is feeling with the feeds. Then he is

suppose to be hooked up at night for 10 hours at 35 but he hasn't

been able to handle that quite yet. The only bolus he can tolerate is

max of 3 oz and tha tis usually his meds. I hope u have luck and

things get better.

(caeden 2.5 yrs mito myop)

[Guest guest]

Darla,

When advancing Zipporah's feeds did you just start one day? Did you try a slow transition? Lucas had his tubes placed when he was 4 so I don't have any experience at that young an age. I would recommend going back to 20+ hours and slowly increasing by 5 cc's an hour and decreasing the time. A good friend of mine who's daughter is G-tube fed gave me the best piece of advice. If Lucas didn't tolerate the hours or the rate we would turn it down or off and wait a little while. I learned forcing it in them and either making them uncomfortable or having them get sick didn't really accomplish anything. I equate it with a child who you are feeding normally. If the child doesn't eat the crust on the peanut butter and jam sandwich do you count it? i.e. If you shut the pump off for 15 minutes or even an hour are you really starving them? You do the best you can and not allow the feeding tube to run your life. It will only make you and your child miserable.

If you are getting alot of the formula back it can make her feel just as bad as if she has gas. Did they do a stomach emptying scan on her? Our GI doc did not do a nissen on Lucas due to past experience with a child with mito who developed worse symptoms with a nissen. Lucas last test showed he had a normal stomach emptying but he was still vomiting up formula. As I was told it only measures how the stomach empties but can not tell you whether the intestine does not empty quick enough for the stomach contents to go in.

Lucas has had a rough last 4 months with feedings although he had done okay for 3+ years before that. I think this is just the nasty part of mito where by you don't know what will take place that day when you wake up in the morning.

I hope this might answer some of your questions.

Loriann

[Guest guest]

They took her off Prilosec immediately when placing the tube as well. I just want to make sure we are doing everything I can to help her.

Darla, I just wanted to let you know that Chelsea was put on Zantac for 6 mos when her gtube was placed, "just in case". She has never really had an issue with reflux, but her drs wanted to keep her acid production down until her stoma healed and her body got used to the nissen.

I am sorry to hear Zipporah is having such a hard time. I hope things get better very soon, if they are not already=)

e, Chelsea's mom(nonspecific mito)