Suggestions on moving off of tube - a good challenge!

[Guest guest]

I'm looking for advice/support from any parents who transitioned their

child off a feeding tube. Cameron (17 months old) is starting to eat

enough calories orally to count towards his daily intake (yeah!). He is

also cleared for nectar consistency fluids and is up to 6 ounces a day.

I got the daily fluid total and caloric total from my nutritionist today

so now I know what we need to get into him to keep him hydrated and

growing. .

Cameron has always had good weight gain. In fact at our last clinic

visit his weight had jumped from 50 percentile to 75 percentile. I

figured out that in order to meet the daily caloric number he will need

to consume approximately 268 calories in solids. Right now he's doing

between 150 and 200 calories a day orally so if we started this new plan

tomorrow, unless he starts increasing his solid food amount he will be

short some calories.

I could make up his calories in Pedisure through his tube at night, but

he is showing signs of wanting food - moving his mouth open/closed as

well as grabbing for food when we're eating - so my gut is telling me to

start pushing him a little to eat more orally. I always offer food

before each bolus. It seems to me that as long as we keep him well

hydrated this plan makes sense. Plus we will start doing regular weight

checks to make sure he is still gaining at an appropriate rate.

Does this plan sounds feasible?

The bottom line is that I don't want to make myself crazy tracking

everything down to the very last calorie ( I do keep a pretty good

record) but I also want to help Cameron get closer to moving off the

tube by eating foods he is cleared to eat orally. He does eat a good

variety (except for veggies): peanut butter on crackers, spaghetti with

sauce, cheese, fruit, cereal, toast, graham crackers, pudding, etc. So

we have a lot to offer him.

Any advice/suggestions would be greatly appreciated.

<------(mom who knows how many calories are in a piece

of Life cereal)

Seattle, WA

Mom to Cameron (17 months, probable CHaRGEr) and (3) and wife to

Linden

[Guest guest]

- Sounds like you've got a great plan. I agree that you have to learn

to relax a bit-otherwise you will go nutty. Feed orally as much as possible

and use the tube for Pediasure or just fluids 'till you see that the oral

intake is good, then back off the Pediasure. Once the fluids become easier

you'll do that less through the tube as well. It was a long process for us, but

we

got there. We kept the tube long after we needed to because of respiratory

issues. When ill it was hell to get enough fluids into Nate. So once we had

a

winter with no pneumonias we took out the tube. It doesn't mean you won't

occasionally think- " it would be easier if we had the tube " but those moments a

fewer and fewer. We've kind of forgotten what it was like!

Hang in there...

Barbara-mom,(CHARGE)9,Rosie13

[Guest guest]

Hi ,

My son Zachary (now 7yrs) was really difficult to transition due to oral-motor

issuses and a lot of sesory issues as well. I was exactly like you. Counting

every calories that even approached his mouth. I was so anxious that it started

to make my family, zachary and myself a bit nutty. The best advice I have for

you ( and it is the hardest) is to relax a bit. Cameron sounds like he is

really on his way. He wants to eat which is sometimes half the batttle! The

other piece of advice is to have some fun with the meals and keep introducing

new things. This way they don't get hooked on just a few foods and it

increases their nutrition.

Your gut is right on!! Always trust yourself!!

Best of luck!!

Jill ( mom to twin chargers, stephen and Zachary, 7yrs old and now just about 40

lbs)

Suggestions on moving off of tube - a good challenge!

> I'm looking for advice/support from any parents who transitioned

> their

> child off a feeding tube. Cameron (17 months old) is starting to

> eat

> enough calories orally to count towards his daily intake (yeah!).

> He is

> also cleared for nectar consistency fluids and is up to 6 ounces a

> day.

> I got the daily fluid total and caloric total from my nutritionist

> today

> so now I know what we need to get into him to keep him hydrated

> and

> growing. .

>

> Cameron has always had good weight gain. In fact at our last

> clinic

> visit his weight had jumped from 50 percentile to 75 percentile. I

> figured out that in order to meet the daily caloric number he will

> need

> to consume approximately 268 calories in solids. Right now he's

> doing

> between 150 and 200 calories a day orally so if we started this

> new plan

> tomorrow, unless he starts increasing his solid food amount he

> will be

> short some calories.

>

> I could make up his calories in Pedisure through his tube at

> night, but

> he is showing signs of wanting food - moving his mouth open/closed

> as

> well as grabbing for food when we're eating - so my gut is telling

> me to

> start pushing him a little to eat more orally. I always offer food

> before each bolus. It seems to me that as long as we keep him well

> hydrated this plan makes sense. Plus we will start doing regular

> weight

> checks to make sure he is still gaining at an appropriate rate.

>

> Does this plan sounds feasible?

>

> The bottom line is that I don't want to make myself crazy tracking

> everything down to the very last calorie ( I do keep a pretty good

> record) but I also want to help Cameron get closer to moving off

> the

> tube by eating foods he is cleared to eat orally. He does eat a

> good

> variety (except for veggies): peanut butter on crackers, spaghetti

> with

> sauce, cheese, fruit, cereal, toast, graham crackers, pudding,

> etc. So

> we have a lot to offer him.

>

> Any advice/suggestions would be greatly appreciated.

>

> <------(mom who knows how many calories are in a

> piece

> of Life cereal)

> Seattle, WA

> Mom to Cameron (17 months, probable CHaRGEr) and (3) and

> wife to

> Linden

>

>

>

>