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Re: SOS!!!!

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,

I understand about the incompetance, been there...done that...

Anyway, no flow in usually means there is either air in the line

between the bag and the pump or there is a problem with the sensors

on the pump. You need to clean the sensors. Also, once in a while

you just get a bag that sucks!! If I have cleaned the pump sensors

and checked the bag and I keep having problems, I just change the

bag. That usually fixes the problem.

How much formula were you trying to give him that you put two full

cans in the bag? His dose probably shouldn't be very high yet.

If you have any problems, email me directly and either give me your

number or I will send you mine.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

with too much stuff to write

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Hi

Sorry Connor is so sore at the moment, and you must be really

stressed by all this new stuff.

I can just remember when liam got his tube, although alot younger

than connor, one thing i do remember is that he didnt tolerate

anything for about 6 days after it went in. Now I look back with all

this experience and go, well RSS kids have exceptionally

temperamental guts anyway, start sticking things through it and

mucking around in there and they are going to shut down.

Id be doing tiny feeds very often for Connor and to stop it being

sore connecting all the time leave the extension on, slip it down

through the tabs in his nappy so it cant pull(sorry diaper!!not

nappy)

has he got a button, how much water is in the balloon, sometimes our

little guys cant tolerate the 5mls they suggest putting in, Liam

only has 2mls.

What sort of pump did you get? all I can say is sometimes they

really do seem to be haunted and you just have to do 2/3 hourly

bolus feeds overnight and hope it works the next day.

While connors getting use to it you may be best to use a farrell

valve??? We dont have them in Aust but i have made one from bits and

pieces. Your stoma nurse or someone who is supplying your gear

should be able to tell you about them. basically if the stomach is

getting to full it will take the excess milk.

Its a huge learning curve, wish we could speak on the phone, but

email if i can help.

Your tough, he will be fine, maybe you need a bottle of that

mudslide to help get through the next couple of weeks though.

Jody

>

> Hey Folks,

>

> Well, I have found a whole new level of incompetence present in

the

> human population. It is dealing with Durable Medical Good's

> companies. We were supposed to have our pump, bags, syringes and

> split gauze pads delivered on Saturday. Guess who isn't open on

> Saturday? Guess who didn't take down my order right? Guess who

> didn't have the kindercal on stock which they assured me they

did?

> Guess who sent a delivery man who didn't know how to set up the

pump

> and train me on it? Guess who's going crzay here!!!!!

>

> The good news is that I have a friend in a support group here in

> Lynchburg whose daughter is g-tube fed also. She came to my house

> at 9:00 p.m. last night and gave the pro's and con's on the

feeding

> pump. She also gave me the flushing syringes that we need to

clean

> his tube out. God was watching over us and I'm grateful.

>

> However, it get's better or worse depending on your point of

view.

> Connor's pump keeps turning off indicating that there is no flow

in

> the tube. We vented the tube twice and the Pediasure ran free. I

> cleaned the g-tube twice. Water runs in. The pump will run for

> three minutes than shut off.

>

> I haven't thrown in out the window....yet. Of course, the

> instruction manual didn't have anything to say about this. I was

> reading it at 4:00 a.m. this morning. So, the wonderful feed that

> Connor was supposed to be getting didn't happen. I gave up at

4:30

> and gave him a bottle. With 2 cans of Pediasure in the bag, I

think

> he got 74 mls over five hours.

>

> Finally, the clincher. Connor last night was crying and in pain.

I

> expected this. He looked at the tube and said, " Mommy take it

out! "

> I now feel lower than pond scum. Please remind me again how this

> tube is supposed to help us with my precious little guy? I've

been

> giving him his pain meds every four hours. He's tender and

doesn't

> want to walk at all. He's also down on his oral feeds with the

> bottle. However, he also hasn't had a b.m. in two days so I'm

> thinking that might be it.

>

> Will keep you posted.

>

>

> Mom to Graham 8 ADD; Cameron 5; Connor IUGR RSS Kyphosis Periactin

> Prevacid Zantac g-tube (grrrrrr) gh in two weeks.

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So sorry !

Poor Connor! Did you get a video tape w/ your pump? It has great

step by step directions I'll fedx you mine if you didn't. My

provider company is useless as well. If not for this fourm I would

have been dead in the water! I hope things get better. They will-

slowly....

You are in my thoughts!

big hugs--

Jenyfer & the Team

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