Old 06-16-2017, 07:31 PM #1 (permalink)
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Default This can't be happening

I can't believe this.. 3 weeks after the peg tube tube was inserted it came out. Back to surgery tomorrow. Nothing but problems with it since the beginning. Devastated!
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Old 06-16-2017, 11:37 PM #2 (permalink)
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Default Re: This can't be happening

Sorry to hear how difficult it's been for you and your PALS. Hopefully they will get all straightened out this time. Will be wishing you both that all goes well.
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Old 06-17-2017, 06:18 AM #3 (permalink)
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Default Re: This can't be happening

I'm sorry to hear this, occasionally this does happen.

When you said nothing but problems since the beginning, what did you mean?
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Old 06-17-2017, 06:40 AM #4 (permalink)
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Default Re: This can't be happening

TIllie,
No proper instruction on feedings, the peg site became infected...formula was not tolerated... the list goes on and on...
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Old 06-17-2017, 10:39 AM #5 (permalink)
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Default Re: This can't be happening

We had the problem with no instructions as well. They gave us endoscopy instructions when we left. I had to call and find out when to take the bandages off and when he could shower. It's super frustrating.

So sorry you are having a hard time. I hope they get it fixed soon and things turn around.

Also, took us a while to figure out what formula would work.
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Old 06-17-2017, 03:48 PM #6 (permalink)
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Default Re: This can't be happening

Has it been replaced now?

I'm so sorry it's been like this. Sadly as CALS we have to be so proactive and constantly think ahead and ask so many questions - instead of being looked after by the health profession.

Do ask here in advance of things happening as we can probably help prepare you better than anyone.

Lots of PALS don't tolerate soy based formulae well.

Would you like to tell us a little more about the formula, amounts, frequency and methods so we can help you get that side of things happening.
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