Re: g-tube question

[Guest guest]

My daughter Grace just had her G tube placed in December. She really has no major feeding issues, is only a little underweight. She had the tube placed mainly for the medicine. She takes so much anymore, that taking them was affecting her. Also the tube is there when she refuses to eat, it is an alternative. We also can, hopefully, avoid hospital stays when she is ill, because we can give her all the fluids through the tube. For her, and us, it has really helped a lot. I know now that she is getting all of her medicine, in the proper doses, and she can eat without added stress. We no longer worry if she is getting enough. There is always an alternative now. Good luck.

[Guest guest]

My daughter Grace just had her G tube placed in December. She really has no major feeding issues, is only a little underweight. She had the tube placed mainly for the medicine. She takes so much anymore, that taking them was affecting her. Also the tube is there when she refuses to eat, it is an alternative. We also can, hopefully, avoid hospital stays when she is ill, because we can give her all the fluids through the tube. For her, and us, it has really helped a lot. I know now that she is getting all of her medicine, in the proper doses, and she can eat without added stress. We no longer worry if she is getting enough. There is always an alternative now. Good luck.

[Guest guest]

Wyatt is having his g-tube put in next Monday, Jan. 19th. We fought

having one for 4 1/2 years. Wyatt is not a failure to thrive, but

like the other post, Grace, we are doing it for all the same

reasons. For 4 1/2 years I struggled with this issue and then all

of a sudden it seemed like the time was right. Go with your gut

instinct- Mother's do know best.

Geri-Anne and Wyatt, complex I

> For those of you who have children with g-tubes - what was the

> reason for the g-tube? Did any of your kids require it because of

> dysphagia? If so, what were things like when your child got the g-

tube

> - how bad?

> Jericho's primary care dr said earlier this week that he wants

> another swallow study to see just what Jericho *is* able to handle

at

> this point. That was sobering. I had expected he just wanted to

see if

> aspiration was the problem or not, which seems to have been pretty

well

> established. But he thinks Jericho is probably silently

aspirating,

> even with thickened things. He said, " some of these kids need

> g-tubes " . So he has joined most of Jericho's other doctors and

> therapists on that one.

> I left his office thinking that we had been experimenting

some, and

> taken his drinks down to honey consistency, so we just needed to

go back

> to halfway-between honey and pudding again. Then he would be

fine. And

> he did seem to do a little better that day.

> Then the next day I noticed him having trouble with his

yogurt - in

> the morning, and in the evening. And yesterday, the same thing.

> Coughing a little while eating it - in " that " cough, the

> wet-in-the-airway-cough. And then rough-sounding breathing

afterwards,

> and thick coughing starting 30-60 minutes after, as well.

> Last night after he was asleep, I checked with a stethoscope,

and he

> again had pockets in his right lung that weren't getting any air.

As I

> listened, he would get gurgly sounds, and then a little bit of air

would

> start getting through to that pocket, then more gurgly sounds,

then a

> little more air. In the end his whole lung was getting air, but

still

> not as much as the left side. This morning it's still getting

less than

> the left side. I'm sure that will change after he has been up for

a bit

> and coughing again. Then his lungs will probably be clear until

close

> to bedtime again.

> He has been much worse in the last month so I'm not terribly

> concerned. But I am a little down. He shouldn't be having ANY

coughing

> or rough breathing or pockets not getting air, or differences in

his

> lungs, at this point. His lungs were in better shape a few days

ago,

> before we made the diet changes!! And yogurt??? He even had

trouble

> with a bite of his pizza last night, and has had some coughing

after

> drinking his very thickened drinks (but only a couple times).

> The other issue is that he still isn't drinking enough. He is

> supposed to be getting 40 ounces a day at a bare minimum, and 50

ounces

> a day as a regular maintenance amount - at a minimum. He probably

gets

> 20-30 ounces per day, if you include all the yogurt he eats. He is

> still urinating twice a day though, and his lips are dry and

peeling but

> not cracking or anything, and his eyes don't look sunken or

anything.

> He still has tears when he cries. But this is the amount of

fluids he

> has been getting for 3 months now, and he has been tired and

cranky this

> whole time - which is really unlike him.

> He goes to the dyphagia clinic on the 21st, so I figure we have

> until then to get him in better shape. But if he is having

trouble even

> with very thickened stuff, and yogurt and pizza - well, what

exactly do

> we feed him now??

> I know he will almost certainly need a g-tube eventually. But

he

> does not look like a failure to thrive child. He is falling on the

> growth charts but not horribly - only 15-20 percentile points in

the

> last year. It just seems like he ought to be able to get through

this

> episode without a g-tube.

>

> Lynne

[Guest guest]

Wyatt is having his g-tube put in next Monday, Jan. 19th. We fought

having one for 4 1/2 years. Wyatt is not a failure to thrive, but

like the other post, Grace, we are doing it for all the same

reasons. For 4 1/2 years I struggled with this issue and then all

of a sudden it seemed like the time was right. Go with your gut

instinct- Mother's do know best.

Geri-Anne and Wyatt, complex I

> For those of you who have children with g-tubes - what was the

> reason for the g-tube? Did any of your kids require it because of

> dysphagia? If so, what were things like when your child got the g-

tube

> - how bad?

> Jericho's primary care dr said earlier this week that he wants

> another swallow study to see just what Jericho *is* able to handle

at

> this point. That was sobering. I had expected he just wanted to

see if

> aspiration was the problem or not, which seems to have been pretty

well

> established. But he thinks Jericho is probably silently

aspirating,

> even with thickened things. He said, " some of these kids need

> g-tubes " . So he has joined most of Jericho's other doctors and

> therapists on that one.

> I left his office thinking that we had been experimenting

some, and

> taken his drinks down to honey consistency, so we just needed to

go back

> to halfway-between honey and pudding again. Then he would be

fine. And

> he did seem to do a little better that day.

> Then the next day I noticed him having trouble with his

yogurt - in

> the morning, and in the evening. And yesterday, the same thing.

> Coughing a little while eating it - in " that " cough, the

> wet-in-the-airway-cough. And then rough-sounding breathing

afterwards,

> and thick coughing starting 30-60 minutes after, as well.

> Last night after he was asleep, I checked with a stethoscope,

and he

> again had pockets in his right lung that weren't getting any air.

As I

> listened, he would get gurgly sounds, and then a little bit of air

would

> start getting through to that pocket, then more gurgly sounds,

then a

> little more air. In the end his whole lung was getting air, but

still

> not as much as the left side. This morning it's still getting

less than

> the left side. I'm sure that will change after he has been up for

a bit

> and coughing again. Then his lungs will probably be clear until

close

> to bedtime again.

> He has been much worse in the last month so I'm not terribly

> concerned. But I am a little down. He shouldn't be having ANY

coughing

> or rough breathing or pockets not getting air, or differences in

his

> lungs, at this point. His lungs were in better shape a few days

ago,

> before we made the diet changes!! And yogurt??? He even had

trouble

> with a bite of his pizza last night, and has had some coughing

after

> drinking his very thickened drinks (but only a couple times).

> The other issue is that he still isn't drinking enough. He is

> supposed to be getting 40 ounces a day at a bare minimum, and 50

ounces

> a day as a regular maintenance amount - at a minimum. He probably

gets

> 20-30 ounces per day, if you include all the yogurt he eats. He is

> still urinating twice a day though, and his lips are dry and

peeling but

> not cracking or anything, and his eyes don't look sunken or

anything.

> He still has tears when he cries. But this is the amount of

fluids he

> has been getting for 3 months now, and he has been tired and

cranky this

> whole time - which is really unlike him.

> He goes to the dyphagia clinic on the 21st, so I figure we have

> until then to get him in better shape. But if he is having

trouble even

> with very thickened stuff, and yogurt and pizza - well, what

exactly do

> we feed him now??

> I know he will almost certainly need a g-tube eventually. But

he

> does not look like a failure to thrive child. He is falling on the

> growth charts but not horribly - only 15-20 percentile points in

the

> last year. It just seems like he ought to be able to get through

this

> episode without a g-tube.

>

> Lynne

[Guest guest]

Wyatt is having his g-tube put in next Monday, Jan. 19th. We fought

having one for 4 1/2 years. Wyatt is not a failure to thrive, but

like the other post, Grace, we are doing it for all the same

reasons. For 4 1/2 years I struggled with this issue and then all

of a sudden it seemed like the time was right. Go with your gut

instinct- Mother's do know best.

Geri-Anne and Wyatt, complex I

> For those of you who have children with g-tubes - what was the

> reason for the g-tube? Did any of your kids require it because of

> dysphagia? If so, what were things like when your child got the g-

tube

> - how bad?

> Jericho's primary care dr said earlier this week that he wants

> another swallow study to see just what Jericho *is* able to handle

at

> this point. That was sobering. I had expected he just wanted to

see if

> aspiration was the problem or not, which seems to have been pretty

well

> established. But he thinks Jericho is probably silently

aspirating,

> even with thickened things. He said, " some of these kids need

> g-tubes " . So he has joined most of Jericho's other doctors and

> therapists on that one.

> I left his office thinking that we had been experimenting

some, and

> taken his drinks down to honey consistency, so we just needed to

go back

> to halfway-between honey and pudding again. Then he would be

fine. And

> he did seem to do a little better that day.

> Then the next day I noticed him having trouble with his

yogurt - in

> the morning, and in the evening. And yesterday, the same thing.

> Coughing a little while eating it - in " that " cough, the

> wet-in-the-airway-cough. And then rough-sounding breathing

afterwards,

> and thick coughing starting 30-60 minutes after, as well.

> Last night after he was asleep, I checked with a stethoscope,

and he

> again had pockets in his right lung that weren't getting any air.

As I

> listened, he would get gurgly sounds, and then a little bit of air

would

> start getting through to that pocket, then more gurgly sounds,

then a

> little more air. In the end his whole lung was getting air, but

still

> not as much as the left side. This morning it's still getting

less than

> the left side. I'm sure that will change after he has been up for

a bit

> and coughing again. Then his lungs will probably be clear until

close

> to bedtime again.

> He has been much worse in the last month so I'm not terribly

> concerned. But I am a little down. He shouldn't be having ANY

coughing

> or rough breathing or pockets not getting air, or differences in

his

> lungs, at this point. His lungs were in better shape a few days

ago,

> before we made the diet changes!! And yogurt??? He even had

trouble

> with a bite of his pizza last night, and has had some coughing

after

> drinking his very thickened drinks (but only a couple times).

> The other issue is that he still isn't drinking enough. He is

> supposed to be getting 40 ounces a day at a bare minimum, and 50

ounces

> a day as a regular maintenance amount - at a minimum. He probably

gets

> 20-30 ounces per day, if you include all the yogurt he eats. He is

> still urinating twice a day though, and his lips are dry and

peeling but

> not cracking or anything, and his eyes don't look sunken or

anything.

> He still has tears when he cries. But this is the amount of

fluids he

> has been getting for 3 months now, and he has been tired and

cranky this

> whole time - which is really unlike him.

> He goes to the dyphagia clinic on the 21st, so I figure we have

> until then to get him in better shape. But if he is having

trouble even

> with very thickened stuff, and yogurt and pizza - well, what

exactly do

> we feed him now??

> I know he will almost certainly need a g-tube eventually. But

he

> does not look like a failure to thrive child. He is falling on the

> growth charts but not horribly - only 15-20 percentile points in

the

> last year. It just seems like he ought to be able to get through

this

> episode without a g-tube.

>

> Lynne

[Guest guest]

it was the best thing we could have ever done for my daughter, anna

grace. she was only eating textured foods and thickened

drinks...and was very small....almost failure to thrive. however,

my husband and I ( and even our parents) were very concerned and did

not know what to do.....we even took anna grace to two feeding

clinics for second and third opinions....all recommending a gtube.

so we did it. grace is now on the charts (50% for length) and

has been healthier. not having to be hospitalized for flu, where

previously she had to be hosptialized. meds are no worry....given

all via gtube. and all of her formula goes in via tube also....so

by mouth she takes things for taste! (the good stuff...candy, ice

cream, chocolate milk)

it really was one of the best things we have done for her and her

health!

bethany

mom to brennan 6, palmer & anna grace (leighs) 4

> For those of you who have children with g-tubes - what was the

> reason for the g-tube? Did any of your kids require it because of

> dysphagia? If so, what were things like when your child got the g-

tube

> - how bad?

> Jericho's primary care dr said earlier this week that he wants

> another swallow study to see just what Jericho *is* able to handle

at

> this point. That was sobering. I had expected he just wanted to

see if

> aspiration was the problem or not, which seems to have been pretty

well

> established. But he thinks Jericho is probably silently

aspirating,

> even with thickened things. He said, " some of these kids need

> g-tubes " . So he has joined most of Jericho's other doctors and

> therapists on that one.

> I left his office thinking that we had been experimenting

some, and

> taken his drinks down to honey consistency, so we just needed to

go back

> to halfway-between honey and pudding again. Then he would be

fine. And

> he did seem to do a little better that day.

> Then the next day I noticed him having trouble with his

yogurt - in

> the morning, and in the evening. And yesterday, the same thing.

> Coughing a little while eating it - in " that " cough, the

> wet-in-the-airway-cough. And then rough-sounding breathing

afterwards,

> and thick coughing starting 30-60 minutes after, as well.

> Last night after he was asleep, I checked with a stethoscope,

and he

> again had pockets in his right lung that weren't getting any air.

As I

> listened, he would get gurgly sounds, and then a little bit of air

would

> start getting through to that pocket, then more gurgly sounds,

then a

> little more air. In the end his whole lung was getting air, but

still

> not as much as the left side. This morning it's still getting

less than

> the left side. I'm sure that will change after he has been up for

a bit

> and coughing again. Then his lungs will probably be clear until

close

> to bedtime again.

> He has been much worse in the last month so I'm not terribly

> concerned. But I am a little down. He shouldn't be having ANY

coughing

> or rough breathing or pockets not getting air, or differences in

his

> lungs, at this point. His lungs were in better shape a few days

ago,

> before we made the diet changes!! And yogurt??? He even had

trouble

> with a bite of his pizza last night, and has had some coughing

after

> drinking his very thickened drinks (but only a couple times).

> The other issue is that he still isn't drinking enough. He is

> supposed to be getting 40 ounces a day at a bare minimum, and 50

ounces

> a day as a regular maintenance amount - at a minimum. He probably

gets

> 20-30 ounces per day, if you include all the yogurt he eats. He is

> still urinating twice a day though, and his lips are dry and

peeling but

> not cracking or anything, and his eyes don't look sunken or

anything.

> He still has tears when he cries. But this is the amount of

fluids he

> has been getting for 3 months now, and he has been tired and

cranky this

> whole time - which is really unlike him.

> He goes to the dyphagia clinic on the 21st, so I figure we have

> until then to get him in better shape. But if he is having

trouble even

> with very thickened stuff, and yogurt and pizza - well, what

exactly do

> we feed him now??

> I know he will almost certainly need a g-tube eventually. But

he

> does not look like a failure to thrive child. He is falling on the

> growth charts but not horribly - only 15-20 percentile points in

the

> last year. It just seems like he ought to be able to get through

this

> episode without a g-tube.

>

> Lynne