Re: g-tube help - please!!!

[Guest guest]

Hi Anne, wish i had some words of wisdom for you but i dont. I can

only tell you that in our situation with Matt, we had to get

overnight nursing. Children are less arguementive when the caregiver

is not a parent. Even at age three they know we are exhausted and

what buttons they can push. You have to get rest so you can care for

him in the daytime. Matt has severe reflux which would cause him to

asperate, and must be kept in fowlers position while sleeping

(propped up on pillows) He also has seizures which would make him

reflux during overnight feeds. He is also on a pulse ox monitor for

seizure activity and apnea, and is still in diapers overnight, he

also requires medication via g-tube overnight. Which made it easier

for us to get overnight nursing, but it is worth trying to get

nursing just on the fact that anyone getting overnight feedings

should be propped up, and carefully watched throught the night just

for the fact of getting tangled in the tubing while sleeping, and

that they are properly tolerating feedings, and since your son is now

throwing tamtrums should make it easier for your GI or primary to

have nursing for him overnight. You let them know about the tantrums

and let them know this is becoming a behavior issue is how you want

to put it. And also that you are losing sleep and need to care for

him in the day. Let your insurance work for you. And get some sleep

so you can be the best mom you can be during the day. If you cant get

nursing try a reward calander, with stickers for each night your son

doesnt throw a tantrum or become demanding he can put a sticker on

that date and at the end of the month he can pick out something

special ie... toy , movie, outing but let him know that if there are

more than 7 nights without stickers NO REWARD. Matt is now 7 years

old and we and our nurses use the calander reward system with him we

include his behavior during the daytime too, must do homework, must

clean room (toys put away) and no arguing when its time to get hooked

up and go to sleep. They can get very comfortable with thier nurses

as they get older and figure out that they can argue with their

nurses too, lights on, more tv, im thirsty, i want to kiss mommy and

daddy goodnight again ect... So the calander has worked out

wonderfully for us and the nurses. HOpe this helps, Barb

[Guest guest]

Hi Anne, wish i had some words of wisdom for you but i dont. I can

only tell you that in our situation with Matt, we had to get

overnight nursing. Children are less arguementive when the caregiver

is not a parent. Even at age three they know we are exhausted and

what buttons they can push. You have to get rest so you can care for

him in the daytime. Matt has severe reflux which would cause him to

asperate, and must be kept in fowlers position while sleeping

(propped up on pillows) He also has seizures which would make him

reflux during overnight feeds. He is also on a pulse ox monitor for

seizure activity and apnea, and is still in diapers overnight, he

also requires medication via g-tube overnight. Which made it easier

for us to get overnight nursing, but it is worth trying to get

nursing just on the fact that anyone getting overnight feedings

should be propped up, and carefully watched throught the night just

for the fact of getting tangled in the tubing while sleeping, and

that they are properly tolerating feedings, and since your son is now

throwing tamtrums should make it easier for your GI or primary to

have nursing for him overnight. You let them know about the tantrums

and let them know this is becoming a behavior issue is how you want

to put it. And also that you are losing sleep and need to care for

him in the day. Let your insurance work for you. And get some sleep

so you can be the best mom you can be during the day. If you cant get

nursing try a reward calander, with stickers for each night your son

doesnt throw a tantrum or become demanding he can put a sticker on

that date and at the end of the month he can pick out something

special ie... toy , movie, outing but let him know that if there are

more than 7 nights without stickers NO REWARD. Matt is now 7 years

old and we and our nurses use the calander reward system with him we

include his behavior during the daytime too, must do homework, must

clean room (toys put away) and no arguing when its time to get hooked

up and go to sleep. They can get very comfortable with thier nurses

as they get older and figure out that they can argue with their

nurses too, lights on, more tv, im thirsty, i want to kiss mommy and

daddy goodnight again ect... So the calander has worked out

wonderfully for us and the nurses. HOpe this helps, Barb

[Guest guest]

Anne,

I would just go back to what you were doing before. It would be VERY difficult

for the tube to come out. I assume that since the tube is new that you have a

PEG??? Do you have one with a balloon? The balloons have water in them

and would be very difficult to pull out. The ones with a disc (have to be

surgically removed/changed) can be pulled out but this is very difficult. Our

had hers accidently pulled out when it got wrapped around her bed. It

took a whole lot of umph to come out and it HURTS so there is little chance

that a kiddo would do it to himself. (I was getting her out of bed and p icked

her up and it got wrapped around the crib rail. Boy, did I feel like an idiot.)

You can get tubular dressings from a medical supply pharmacy and put it

around Asher's middle to kind of keep things in sleep while he is getting his

feeds. These can be washed and dried even though it does not say so on the

package.

If you keep giving in to him he will have all the control and the rest of you

will

be miserable.

Good luck.

[Guest guest]

Anne,

I would just go back to what you were doing before. It would be VERY difficult

for the tube to come out. I assume that since the tube is new that you have a

PEG??? Do you have one with a balloon? The balloons have water in them

and would be very difficult to pull out. The ones with a disc (have to be

surgically removed/changed) can be pulled out but this is very difficult. Our

had hers accidently pulled out when it got wrapped around her bed. It

took a whole lot of umph to come out and it HURTS so there is little chance

that a kiddo would do it to himself. (I was getting her out of bed and p icked

her up and it got wrapped around the crib rail. Boy, did I feel like an idiot.)

You can get tubular dressings from a medical supply pharmacy and put it

around Asher's middle to kind of keep things in sleep while he is getting his

feeds. These can be washed and dried even though it does not say so on the

package.

If you keep giving in to him he will have all the control and the rest of you

will

be miserable.

Good luck.

[Guest guest]

Anne,

One thing we do to reduce the stress on the tubing is put fabric tape

around the connection between the bag and the extension (not on the

actual connection but just above on the plastic) and safety pin it to

's shirt. If we forget and pick him up the safty pin pulls on

the shirt before the tubing pulls on the button. When he first got

his button he was much younger and we taped the tubing onto his

pajamas to keep him from getting tangled in it. Other that the fact

that the tape had to be completely removed every morning this worked

for many months.

has had his button over 5 years. Only once did we pull it out

by accident. That was when the ballon had become a little

underinflated and we picked him up with the tubeing wrapped around a

chair part.

The only way I could a kiddo pulling it out himself is if they were

too young to let go when it started to hurt. I know some still do

but ouch!

You could try taping a loop of the extension right onto his stomach

with i.v. tape. it will pull on the skin there and discourage any

more pulling. We could only do that for a little while though because

the adhesive was had on the skin.

Sorry about the lack of sleep maybe one of theses things could help.

Twana

> thrash around and pull out the tube