Re: How did you loose the tube - more feeding stuff

[Guest guest]

Hi and Kim,

I don't really have an answer for you. is also 5. He is on the

tube overnight, eats orally during the day and also gets 1 or 2 bolus

during the day, depending on how he is eating.

As of now, we are not concerned about his night time feeds. If

anything, we are going to work on more calories during the day so we

can do away with his daytime bolus.

This is actually on my list of questions for Dr H. We see her

tomorrow.

Good luck,

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

[Guest guest]

I have to admit that I don't think we officially, methodically

weaned Max off the feeding tube. It just seemed to happen gradually

over time. He was working with a speech therapist and a physical

therapist who coordinated their efforts to get him to eat more, sit

in a special chair that put him in the right position, etc. He

began to show more and more interest over time and then just ate

enough during the day so that we could make up the difference at

night.

One thing I DO recall is that Max started going to all day

kindergarten and then first grade. We did not want him to have to

take the pump along, so we told him we would not use it as long as

he snacked during the day. Then, as soon as he came home, we hooked

him up again. Over time, he ate enough that we could go longer and

longer after school without it. Then it got to the point where he

did not want the pump dragging along with him, so we told him that

if he ate, he could do without it until after dinner. He was old

enough to understand and we made that deal.

For several years we had to keep the button in Max because he kept

getting sick and winding up in the hospital. He would not eat for

days and we had to resort to the feeding pump again. At one point I

know we said enough was enough and pulled the thing ourselves. It

was just there, not being used, and he had terrible granulation

tissue. That was in January. Well, by March he was in the hospital

again with another stomach bug and wound up on TPN because he just

could not eat. We did not want another g-tube for him! But we lost

that battle when he had the " triple procedure " two years ago and a j-

tube was placed.

To make this long story have an ending, the doctors all agreed that

Max had to go for a year without needing the tube before they would

pull it. Last May was the one year mark and it was pulled. The

true tests had been when Max was hospitalized twice for stomach

viruses and he did not need the feeding tube. He was able to resume

eating after 5 days each time.

Jodi Z

[Guest guest]

and Kim,

Our son had a G-tube for 6 years, from ages 2 to 8. We did

mostly nighttime feeds, partly because he didn't tolerate bolus feeds

too well, but also if we fed him through his tube during the day, he

wouldn't eat anything orally. So we just worked during the day on

getting him to eat, and tried to make up the " missing calories " at

night.

Over a several year period, we slowly weaned him off his nighttime

feeds, as he began to eat more and more during the day. Now at age

10 he actually eats pretty well - like this evening he ate 4 pieces

of pizza!

- Joe

> Hey all, more feeding questions.

>

> Grant has had a tube for 3 years and will be 5 years old in

November,

> we started feeding therapy again (had it before the tube was

placed).

> We have just had the first meeting with all the therapists

> (nutrition, OT, psyc…) and the general plan is to reduce his

night

> feeds and increase his daytime intake. It makes a lot of sense to

me

> because Grant can eat orally he just does it poorly. The approach

is

> kind of part feeding therapy and part tube " weaning " . I wasn't

really

> expecting the " weaning " part so soon and was wondering what the

> collective experiences have been for this group. I would be curious

> to hear how some of you transitioned from night feeds to day feeds

and

> eventually to all oral intake – what worked well/what didn't.

In the

> back of my mind is Dr. H saying " They can't grow on air " . Thanks,

> and Kim