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Old 04-10-2013, 09:33 AM   #11
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Re: G tube?

G-tube is not automatically going to qualify a child for nursing everywhere. In our state TPN feeds (IV) and trachs are the only thing that will give you automatic approval for nursing. In our old state ia g-tube would but then again that state just got busted by the feds for denying private duty nursing (PDN) without cause thus forcing parents with young children who could not live at home without nursing care to be warehoused in geriatric nursing homes so obviously that system didn't work so well. I would check his Medicaid policy or private insurance policy before I bought into the PDN coverage claim and even then reality does not always match policy. For example when I lived in my old state one of the primary reasons I left was because he qualified for PDN but no one in our county would do PDN for a pediatric patient. Our new state he would only qualify for PDN for a few weeks at a time. My son's medical issues have even gotten more complex so it isn't his status that changed just the bureaucracy.

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Old 04-10-2013, 09:52 AM   #12
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Re: G tube?

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G-tube is not automatically going to qualify a child for nursing everywhere. In our state TPN feeds (IV) and trachs are the only thing that will give you automatic approval for nursing. In our old state ia g-tube would but then again that state just got busted by the feds for denying private duty nursing (PDN) without cause thus forcing parents with young children who could not live at home without nursing care to be warehoused in geriatric nursing homes so obviously that system didn't work so well. I would check his Medicaid policy or private insurance policy before I bought into the PDN coverage claim and even then reality does not always match policy. For example when I lived in my old state one of the primary reasons I left was because he qualified for PDN but no one in our county would do PDN for a pediatric patient. Our new state he would only qualify for PDN for a few weeks at a time. My son's medical issues have even gotten more complex so it isn't his status that changed just the bureaucracy.
We are in Canada. His Nutritionist and OT were the ones who told me and they are from the same organization that would provide the nursing care.
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Old 04-10-2013, 10:45 AM   #13
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Re: G tube?

I'm at work now, but will write more later. We've been working with a tube for 4 years. It is not so hard once you get used to it.

Tube=security blanket! Embrace it, don't fight it! You won't regret it.

We don't get nursing care for a tube in Indiana. DS went to normal preschool like any other kid til he turned 3, and now is in our public school's developmental program. We only get nursing care if you have a trach here.
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Old 04-11-2013, 06:01 AM   #14
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Re: G tube?

Well I think all of my questions have been answered for now, thank you everyone for helping and sharing.

We see his doctor tomorrow so we will find out our next steps and where we go from here. Obviously we will not be fighting it if it's what she thinks is best, we just want him to have what he needs and whatever is best for him.
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Old 04-12-2013, 12:14 AM   #15
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Re: G tube?

We have 3 children with G-tubes. Our oldest son got one at age 8, and our 2 youngest girls got one at 6wks old, and 10wks old. (they all have a condition that causes tummy issues) Anway, we have years of experience. Several different types of tubes, and different ways we have fed them too. All of ours can eat by mouth as well. Please PM me if you have any questions throughout this process. But I agree, I think he needs a gtube.
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Old 04-12-2013, 05:20 PM   #16
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Re: *Update first post* G tube?

Update in the first post.
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Old 04-12-2013, 07:51 PM   #17
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Re: *Update first post* G tube?

Mama--not going to lie...there IS a learning curve. But you CAN do this. We all had some not so shining moments the first few weeks. For about the first 3 weeks after DS got his (we'd been on an NG til that point and he aspirated), DH and I kept asking ourselves if we did the right thing while feeding the bed, him puking everywhere, and the pump beeping incessantly.

But, it gets better. You find a new routine. You figure stuff out. And then, you won't remember life without it.
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Old 04-13-2013, 06:19 AM   #18
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Re: *Update first post* G tube?

He'll do great! And you will be a pro before you know it.
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Old 04-13-2013, 08:08 AM   #19
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Re: *Update first post* G tube?

I'm sure he will do fine as far as surgeries go this is definitely one of the easier ones. Our old GI always did percutaneous endoscopic gastrostomy procedure. He didn't even book a surgical suite for this they just did heavy sedation with pain control in an outpatient surgical procedures lab then a transfer to a 1 day inpatient stay afterwards for observation, first tube feed and parent education purposes.

Yes, there is a learning curve. Gastrostomy care is not a one size fits all type of deal, what works for one child may not for another. Just be open to all suggestions and willing to do a bit of trial and error, eventually you will learn what works best for your child and situation.
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Old 04-13-2013, 08:47 AM   #20
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Re: *Update first post* G tube?

I guess one of our biggest concerns right now is how to explain it to our older 2, they are 7 & 6. Our 7 year old has special needs and it will be pretty disturbing to her to see I think.

How do we go about letting them know they need to be careful with him and just make it something they can understand?
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