Re: NG-tube issue

[Guest guest]

Darla,

Audrey only had her NG for 2 days before they put in her G tube. She was literally starving, unable to take in enough calories to sustain her so they had no choice. We hated the NG, she has very little strength but she managed to pull that darned NG out everytime her hands got loose. The G tube as you know is so much better. Audrey's is a micro-invasive. They did this because it is a one step method verus the two steps needed for the Mic-key. Porrah's road so far sounds so much like Audrey's it is like reading about Audrey.

Try to get some rest for yourself, I know how hard that is for a busy mom.

Praying for all of you,

Kathy, grandma to Audrey, 31 mos

[Guest guest]

Darla,

Audrey only had her NG for 2 days before they put in her G tube. She was literally starving, unable to take in enough calories to sustain her so they had no choice. We hated the NG, she has very little strength but she managed to pull that darned NG out everytime her hands got loose. The G tube as you know is so much better. Audrey's is a micro-invasive. They did this because it is a one step method verus the two steps needed for the Mic-key. Porrah's road so far sounds so much like Audrey's it is like reading about Audrey.

Try to get some rest for yourself, I know how hard that is for a busy mom.

Praying for all of you,

Kathy, grandma to Audrey, 31 mos

[Guest guest]

Darla,

Audrey only had her NG for 2 days before they put in her G tube. She was literally starving, unable to take in enough calories to sustain her so they had no choice. We hated the NG, she has very little strength but she managed to pull that darned NG out everytime her hands got loose. The G tube as you know is so much better. Audrey's is a micro-invasive. They did this because it is a one step method verus the two steps needed for the Mic-key. Porrah's road so far sounds so much like Audrey's it is like reading about Audrey.

Try to get some rest for yourself, I know how hard that is for a busy mom.

Praying for all of you,

Kathy, grandma to Audrey, 31 mos

[Guest guest]

Darla,

My daughter Maggie had her NG tube for over a year and half. We placed it at seven months old and changed it from side to side once a month religously, she just got her G tube last month at 28 mos. old we never had any problems with infection or with it getting in the airway.The problem that did occur was that she pooled her sercretions from her tube bothering her so much. So pretty much she sounded like a washing machine at times what seemed to help her was given her tylenol ever four to six hours and it relaxed her enough that it wasn't as brothersome to her.

Why we waited so long to place her G tube was we thought she wasn't strong enough to go though the operation and we were happy that we waited she did great and is still doing wonderful.

I hope this helped.

Valina

Maggies mom Leigh's SyndromeDarla Klein wrote:

I think we are going to need a ng-tube. Zipporrah is really having problems with all her meds. We had to add the steroid today on top of COQ10, Carnitor, Prilosec, and Tri-vi-sol. When I give her the meds she has no idea of how to swallow them. Most of the time she has coughed and sputtered and gasped for air. But it is really getting scary to give it to her lately. The last few days she has been turning blue after taking the meds and is in obvious distress for quite a while after taking them. I am so frustrated as I know this is probably part of the reason she has had two major upper respiratory infections. I know how I feel when I accidentally swallow something down the wrong tube so I can't imagine doing this several times a day! And she has no way of stopping it. I stopped giving her the COQ10 and Carnitor over a week ago because it seemed to worsen her illness. But I

continued to give the Prilosec. In the hospital she coughed and sputtered and then threw it and her previous meal up. Now, it's not coming out much, just seems to be staying in and probably aspirating.

QUESTION: How long have some of you used the ng-tube before getting the g-tube. Asenath had one for 6 weeks and I was told it wasn't good to go much longer because of possible infections and damage to the internal passageways. Plus the possibility of it moving into the lungs or etc. if not careful. I know how to use them so not too worried about that issue but am worried about a g-tube operation at such a young age and with so many illnesses in her short life. Any help on your experiences is welcome! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah (5 mon.) Mito, strokes, sensory is! sues, hy pertonia, feeding/breathing issues...Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

We also kept the n-g tube for about a year and a half. did not

get any infections but there are some unpleasent n-g tube things. He

did not like it when he threw up since his tube would come out of his

mouth while still being in his nose. Gross but kind of cool. W'e

rinse it off (the hanging part) and pull it back out through the

nose. did have a little trouble with the tape cause some

irritation after a while. You do learn where to move it to get the

best straight shot. It did cause some irritation in the throat but

that was minimal.

You have to watch the kiddos and animals as the loop out the nostril

is too good to pass up. We had little people pull it out several

times. He was on a drip feeder so just kept it in all the time. I

know some people put them in and out for each feeding.

Looking back, we would change over to the g-button much sooner is we

would have known how easy it was. It is easier for him socially to

be able to pull his shirt down over it rather than have the long tube

out of his nose. We just had to accept that this was not a short

time feeding thing. We actually had his muscle biopsy done when the

g-tube was being placed to minimize surgeries.

Whichever way you decide you can make it work.

Twana

> QUESTION: How long have some of you used the ng-tube before

getting the g-tube.

[Guest guest]

Darla,

We also kept the n-g tube for about a year and a half. did not

get any infections but there are some unpleasent n-g tube things. He

did not like it when he threw up since his tube would come out of his

mouth while still being in his nose. Gross but kind of cool. W'e

rinse it off (the hanging part) and pull it back out through the

nose. did have a little trouble with the tape cause some

irritation after a while. You do learn where to move it to get the

best straight shot. It did cause some irritation in the throat but

that was minimal.

You have to watch the kiddos and animals as the loop out the nostril

is too good to pass up. We had little people pull it out several

times. He was on a drip feeder so just kept it in all the time. I

know some people put them in and out for each feeding.

Looking back, we would change over to the g-button much sooner is we

would have known how easy it was. It is easier for him socially to

be able to pull his shirt down over it rather than have the long tube

out of his nose. We just had to accept that this was not a short

time feeding thing. We actually had his muscle biopsy done when the

g-tube was being placed to minimize surgeries.

Whichever way you decide you can make it work.

Twana

> QUESTION: How long have some of you used the ng-tube before

getting the g-tube.

[Guest guest]

Darla,

We also kept the n-g tube for about a year and a half. did not

get any infections but there are some unpleasent n-g tube things. He

did not like it when he threw up since his tube would come out of his

mouth while still being in his nose. Gross but kind of cool. W'e

rinse it off (the hanging part) and pull it back out through the

nose. did have a little trouble with the tape cause some

irritation after a while. You do learn where to move it to get the

best straight shot. It did cause some irritation in the throat but

that was minimal.

You have to watch the kiddos and animals as the loop out the nostril

is too good to pass up. We had little people pull it out several

times. He was on a drip feeder so just kept it in all the time. I

know some people put them in and out for each feeding.

Looking back, we would change over to the g-button much sooner is we

would have known how easy it was. It is easier for him socially to

be able to pull his shirt down over it rather than have the long tube

out of his nose. We just had to accept that this was not a short

time feeding thing. We actually had his muscle biopsy done when the

g-tube was being placed to minimize surgeries.

Whichever way you decide you can make it work.

Twana

> QUESTION: How long have some of you used the ng-tube before

getting the g-tube.

[Guest guest]

When I give her the meds she has no idea of how to swallow them. Most of the time she has coughed and sputtered and gasped for air. But it is really getting scary to give it to her lately. The last few days she has been turning blue after taking the meds and is in obvious distress for quite a while after taking them.

Darla, This sounds so familiar it's scary. We never knew Chelsea had aspiration issues until she had a swallow study done at 2 1/2yrs. The study showed she was microaspirating all textures to pretty significant degree (the radiologist freaked out and demanded we stop the test). Yet, she was NOT getting ill at all from the aspiration. 2 mos. later, she was dx'd with epilepsy and had to start taking phenobarb. With the very 1st dose, her feeding issues became worse, and we began seeing just what you described above with most of her feedings. I continued to persevere, determined to keep her eating orally because she loved it so. Unfortunatly, 3 mos. later, she woke up with severe aspiration pneum. (that was when I had the SWAT team experience in the ER). She spent over a week on a vent and went home with an ng. Her ped encouraged us right from the beginning to make a decision regarding getting the tube or not. She did not want the ng in any longer than 8wks or so, as she was concerned about damage to her cardiac sphincter and esophogus from reflux. About 5 wks or so after it was put in, 3wks after recovering from pneum, her ped removed the ng. Prior to that, she had been showing promise of returning to oral feeds, but within 24hrs, I called her ped back and said we had to replace it and start the process for getting a gtube. In that 24hrs, Chelsea was hardly able to eat a bite and literally wilted before our eyes, I could not get any meds down her, including her phenobarb, which had been switched from pill to liquid with the ng placement. I was scared out of my mind and didn't know what to do. Her ng was replaced within a week, but she was already coming down with asp. pneu. again. She ended up in the hosp. on a vent a few days later. This time, I begged for a gtube. Her ped was wonderful and did all the coordinating with the GI drs and surgeons to have it done as soon as she was well enough. At that time, we were told the gtube was a bandaid for her problem, she would continue to aspirate and her lungs would deteriorate. BOY! were those drs wrong! Ever since the gtube, she has done much better and has only been vented for surgeries. She still does get asp. pneu, but mostly from a viral infection. And she is able to recover at home.

I know this is a hard decision for you. Having 2 mito kids, both with gtubes does seem overwhelming. But given all the problems Porrah is having now, it might be a good idea to have an ng placed to see how she does on it. It may worsen her reflux, something to discuss with her ped. I read the surgeon's report from CHelsea's gtube surgery and it stated there were mild adhesions in her esophogus, indicative of reflux damage. Chelsea had an upper GI with the 2nd ng placement, which showed no reflux, and she never had any noticable problems. I would reccomend feeding her upright and keeping her that way for 20 to 30 mins after a feed, this should reduce the reflux some. Sorry for the long note, I wish I could be of more help, but this is something that you will have to decide with your family and drs. I remember how hard it was on us 4 yrs ago, but in the end, it was the best thing we could've ever done for her. I will be thinking of you guys! Hang in there!

e, Chelsea's mom(nonspecific mito)