Hi all

Ben is going in for surgery next week to have a permanant jejunal feeding tube placed.  This will mean he will then have two buttons on his tummy one gastric and one into the jejunum.

His jejunal feeding to my surprise has gone pretty well this summer since we had a gastric jejunal tube placed but this is high maintenance and a permanant one will mean less anaesthetics for him in the long run.

Has anyone else out there had this surgery?

Sally x

My son Paul had His G/J tube place in April 2009 right now the doctor says it isnt perminet hedoesnt eat liquid orally but does eat stage one baby food orally he is on Peptamen jr w/fiber the formula works right now but he has a very bad gage reflex and throws up alot and it is very acidy and smelly but for the most Paul is doing excellent with his placing of the tubes. both Paul and my daughter harleeGrace see the same doctor and when harleegrace gets older the doc recomends her to get a g/j tube as well but right now she is only 5 months and gaining weight like a champ "18 lbs" hehe

Hi

Thanks for your reply.  Ben too has suffered a lot with reflux so had a fundoplication for it when he was 4 years old and also takes the medicines Losec and Gaviscon.

Best wishes

Sally x

Heidi, lilliana has increased reflux when we give her the pediasure with fiber and she throws up more often. if you NEED to give fiber maybe you could vent pauls tube in middle of his feedings. our nurse said that the fiber not only takes longer to digest but is "bubbly" so can cause gas.  how long has he been on the "formula" with fiber becuase maybe he needs to get use to it. maybe you could mix it with so "formula" with out fiber. is the formula you use a 30 cal per oz (thats what pediasure is) is he on a pump or gravity. our nurse said gravity allows the tummy to vent so we were thinking of getting a gravity bag for in between feedings so she can vent more (shes pump feed every 3 1/2 hrs and doesnt do much oral but when she does its normal food we eat and pureed to a stage 3 baby food thickeness.)

sally is the gaviscon over the counter and scribe.  when i was pregnant both times my OB told me to take gaviscon over the counter. 

tiffany

Paul has been on the peptamen jr w/ fiber since he was 13 months so a while i feel it been ok but his reflex and him throwing up acid has been going on since birth but it has subsized some what but smell horrible and he always needs a rag under him and i constilly change his shirt he goes throught about 10 shirts a day he gags very bad and prejectiles alot too we never tried pedisure but our doc. says the peptamen jr is the best for tube fed children its up to age 10 yrs old but he said it will change before then for calorie/age reasons but he has been puting weight on but his legs are very stick like but he does have fat too my daughter on the other hand the docs says she is over weight so they are decreasing her formula she is on allimentem paul was on that aswell that is the only formula that works for her she doesnt have reflex and she doesnt throw up,her and there she dribbles

Hi all,

As I write Sally is in hospital and Ben is being operated on having his G/J tube. Right now he should be about 2 hours in to the 4hour operation.

All being well they will be home at the weekend or early next week.

I'm at home looking after the other two tinks, so they had better behave!

Cheers,

Adrian

Hi there-

First, we hope Ben and Sally are home soon!  We hope everything goes well.

The website is fantastic and thanks so much for getting it up and running.

I have been trying to post a photo of our Benjamin but it will not upload. Any suggestions?

Thanks and all the best,

Abby

Hy Adrian , 

I wish you all the best with the operation ,hope they are home soon .

by  Sylvia

Preys are with ben and family that surgury goes great hope ben is well and best of luck

god bless Heidi

Hi Abby,

If you email your photo as it is then i'll have a look and see if it the file itself is causing problems.

Regards,

Adrian

Hi All,

We have been in the hospital with Sarp more than 40 days and yesterday we came home. We had operation for Nissen Fundo, GTube and Hernia. As for Hernia and Nissen Fundo operation it was quite good but G Tube was awful. Because Sarp has convulsions and when he made his body stiff the formula and gas has blows from the hole on his stomach. I mean the gas is not coming from the tube but around the tube. I could not believe it at the first time but the doctor said it is normal. I was very dissapointed since Sarp had convulsions due this wound and we could not stopped him for 18 hours with convulsions. No medication worked except Nervium. After the main pain recovered this time the color around hole on his stomach changed to yellow and he had something like ulcer on the wound. He had some antibiotics but still it is continuing. Doctor told that it may happen to all G Tube patiens since the content of stomach sometimes leaks around the Gtube. It is really unbelievable beacuse he did not mention about the side affects of that oprations.

Now we are at home and still have leaks around GTube. The color of his skin around G tube is dark pink and in side of the hole is yellow. It means there is something ulcer continuing. We are draining the wound 4-5 times a day, using Silverdin pomade for burned area due to acidic stomach content, and using rash cream which was recomended by the doctor but no recovery at all.

I am very tired of being so suspicious but I really become crazy. When he was first hospitalized he was infected by H1N1 virus and he spent 20 days struggling with this virus. After that he had lung problems with 02 support in the hospital till now. Still we are supporting him with 02 because anesthesia made the lungs worse and worse.

Do you have the same problem of leaking, gas blowing around the Gtube or do you think it wil recover when the wound gets OK? And ofcourse do you have any special medicine or pomade for the rash. Pls advise me what I should do, On Monday I am planning to go to an infecion specialist since the color is getting yellow and we had fever for 2 days.

Thanks alot in advance,

It is not a good picture but pls check the condition of our G Tube from the attached file, do you think it is normal because 18 days passed already since we had had the operation.

many hugs,

Bihter

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 IMG_0255.JPG [290 KB]

HI Bihter, Our lilliana had her G tube placed in March and we still have some coloring around the hole.  i do think it is normal for blows and draining around the tube.  we use a few different ointments (nystatin for the bumps or yeasty rash, mupirocin for the red crusty rash and triple antibiotic ointment plus its over the counter here and it also has something for pain i it) we were worried at first too but it gets better.  lillianas leaked all the time but thats because at first the wound hole is swollen and when the swelling goes down the hole isnt as tight around the tube after a few months they will probably switch the peg tube to a mic key button or someting like that and it will be a tighter fit.  for now i would just keep gauze around it and change it often or it will get more red and colored.  it might even be a yeast rash thats what we used the nystatin for and lilliana nurse always said her site looked good.  just try keeping it dry especial if its warm outside.

Tiffany <3

attached is a picture of lillianas site today it still has red coloring around it and a picture of her when she first had it placed but you can only see how we put gauze around it

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 P1040665.JPG [1461 KB] :: lillianas feeding tube site
 IMG_0126.JPG [2063 KB]

Hi Tiffany,

Thank you so much. Your reply made me much better. I have heart almost the same things from the surgeon but I needed to hear it from somebody who is actually using this antipatic tool which is very hard to use for me.

Bihter