tube feeding, supplemental or round the clock

[Guest guest]

Hi. I was about what made your doctors decide to solely tube feed or do

supplemental feeds. Our docs said because Autumn does eat although not

consistantly, that they only wanted supplemental feeds so we don't mess

up her eating but I have read about many kids being solely tube fed

once given the g-tube. The docs said on the days she doen't eat to

bolus throughout the day and on the days she does to supplement her at

night. How did the doctors decide this and does it help better than

supplemental? Autumn has gained some since her tube was placed but

then she also grew some so overall she looks a little better but it is

going so slowly...at least I know she won;t go back to 16 lbs. Now she

is sick again and refusing to eat so I am bolusing her every 3-4 hour

hrs. She is 30 1/4 inches and was 17 lbs 13 oz a couple of days ago

and I know she has lost a little since then due to gradual decline of

eating..it makes it hard to know just how much and when to bolus until

she totally stops eating (now)

[Guest guest]

Hi ,

This is one that we are very familiar with. When had his

gtube placed he was eating although very little and certainly not

enough to grow. At first, Dr H wanted him on continuous feeds, but

we spoke to her and said that we had worked to hard to teach

to chew. We then went to " mainly " tube feeds but three meals a

day. 's schedule was as follows:

7 PM - tube on for the night.

7 AM - pump off

8 am - breakfast

9 am - pump on

noon - pump off

1 pm - lunch

2 pm - pump on

5 pm - pump off

6 pm - dinner

The idea was to turn the pump off 1 hour before a meal, give 1

hour to eat and then turn the pump on. At this point, was

receiving 100% of his required calories from the pump and the

calories he ate were a bonus.

As of today (3 1/2 years later), is on his pump from 8:30 pm

to 5 am at 40 ml/hr and 1 bolus right before be of 60 ml with his

meds mixed in. He is down to 360 ml/day from the pump. We are

slowly weaning him off.

Judith, Steve, (RSS) and (non RSS) almost 6 year old

twins

[Guest guest]

Thanks for the schedule and information. It is nice to hear of other

options that have worked well. I wonder what Dr. H would say about

Autumn.

>

> Hi ,

>

> This is one that we are very familiar with. When had his

> gtube placed he was eating although very little and certainly not

> enough to grow. At first, Dr H wanted him on continuous feeds, but

> we spoke to her and said that we had worked to hard to teach

> to chew. We then went to " mainly " tube feeds but three meals a

> day. 's schedule was as follows:

>

> 7 PM - tube on for the night.

> 7 AM - pump off

> 8 am - breakfast

> 9 am - pump on

> noon - pump off

> 1 pm - lunch

> 2 pm - pump on

> 5 pm - pump off

> 6 pm - dinner

>

> The idea was to turn the pump off 1 hour before a meal, give

1

> hour to eat and then turn the pump on. At this point, was

> receiving 100% of his required calories from the pump and the

> calories he ate were a bonus.

>

> As of today (3 1/2 years later), is on his pump from 8:30 pm

> to 5 am at 40 ml/hr and 1 bolus right before be of 60 ml with his

> meds mixed in. He is down to 360 ml/day from the pump. We are

> slowly weaning him off.

>

> Judith, Steve, (RSS) and (non RSS) almost 6 year old

> twins

>

[Guest guest]

,

You are doing all the right things to keep Dasia interested in

eating. She also has older siblings to watch and use as models. That

is great. I know she will decrease her interest after the surgery,

but it will increase again. I know it will. Good luck with the

surgery and please let us know how it goes.

Gosh, it seems like yesterday, even though it's only been like three

weeks, since I spoke to you and encouraged you to take Dasia to the ER

for her ketones and such. Now look a the great leap you are making.

That is so good for her - and you. It's going to be such a relief

knowing that your child is getting the nutrition she needs. And look

at the advocate you have become. Good for you!

Jodi Z