need a shoulder......

B

babimam

New member
Sorry, but I need to let some things out and maybe get some common sense advice to boot.
My son found out today that he is going to have a gtube put in. We have battled with his wieght since he was born and it is crunch time now. We are fighting pa and even with 4 boosts, 2 power shakes and everything else he has only put on 3/4 of a pound in nearly 2 months. He of course can't understand why and is genuinly frightened of the whole situation. How do you explain?
I feel like just shouting that I GIVE UP. Then I loook at him and feel ashamed that I would even think of it.
How are we supposed to do it? I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now. I am sorry I just feel the distance between me and home right now and I am feeling very lonely. I need a good old fashioned kick in the butt !!
Any ideas on how to convince him? I have two months. How do you all keep going?
 
B

babimam

New member
Sorry, but I need to let some things out and maybe get some common sense advice to boot.
My son found out today that he is going to have a gtube put in. We have battled with his wieght since he was born and it is crunch time now. We are fighting pa and even with 4 boosts, 2 power shakes and everything else he has only put on 3/4 of a pound in nearly 2 months. He of course can't understand why and is genuinly frightened of the whole situation. How do you explain?
I feel like just shouting that I GIVE UP. Then I loook at him and feel ashamed that I would even think of it.
How are we supposed to do it? I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now. I am sorry I just feel the distance between me and home right now and I am feeling very lonely. I need a good old fashioned kick in the butt !!
Any ideas on how to convince him? I have two months. How do you all keep going?
 
B

babimam

New member
Sorry, but I need to let some things out and maybe get some common sense advice to boot.
My son found out today that he is going to have a gtube put in. We have battled with his wieght since he was born and it is crunch time now. We are fighting pa and even with 4 boosts, 2 power shakes and everything else he has only put on 3/4 of a pound in nearly 2 months. He of course can't understand why and is genuinly frightened of the whole situation. How do you explain?
I feel like just shouting that I GIVE UP. Then I loook at him and feel ashamed that I would even think of it.
How are we supposed to do it? I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now. I am sorry I just feel the distance between me and home right now and I am feeling very lonely. I need a good old fashioned kick in the butt !!
Any ideas on how to convince him? I have two months. How do you all keep going?
 
S

sdelorenzo

Guest
My daughter is getting a g-tube next month. She meet with a child life specialist at the hospital to discuss the g-tube button. They had a life size doll with a g-tube in its belly. They also went over a book and some info that helped explain it all. It really helped my daughter. I could tell she was relieved after the meeting. Since then she hasn't complained about the upcoming procedure. If I had known they had this life specialist I would have made the appt months ago. We have known about the g-tube being placed for about 4 months but the surgery keeps getting postponed. Maybe meeting with the child life specialist would help your son.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
My daughter is getting a g-tube next month. She meet with a child life specialist at the hospital to discuss the g-tube button. They had a life size doll with a g-tube in its belly. They also went over a book and some info that helped explain it all. It really helped my daughter. I could tell she was relieved after the meeting. Since then she hasn't complained about the upcoming procedure. If I had known they had this life specialist I would have made the appt months ago. We have known about the g-tube being placed for about 4 months but the surgery keeps getting postponed. Maybe meeting with the child life specialist would help your son.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
My daughter is getting a g-tube next month. She meet with a child life specialist at the hospital to discuss the g-tube button. They had a life size doll with a g-tube in its belly. They also went over a book and some info that helped explain it all. It really helped my daughter. I could tell she was relieved after the meeting. Since then she hasn't complained about the upcoming procedure. If I had known they had this life specialist I would have made the appt months ago. We have known about the g-tube being placed for about 4 months but the surgery keeps getting postponed. Maybe meeting with the child life specialist would help your son.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babimam</b></i>
I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now.</end quote></div>

Why can't you keep working the same after the G tube?
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babimam</b></i>
I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now.</end quote></div>

Why can't you keep working the same after the G tube?
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babimam</b></i>
I am sitting here looking at bills, knowing that I can't keep working the same after the tube but I can barely keep our heads above water now.</end quote></div>

Why can't you keep working the same after the G tube?
 
T

thefrogprincess

New member
You may have to take a few weeks or so off during your son's recovery period but I don't really see any reason that you should have to stop working. Also if he has the tube he may qualify for SSI benefits (depending on how much you make as a family).

Anyway, having him meet with someone at the hospital is a good idea but I would also find out if you could arrange for him to meet another child around his age who has a g-tube. It would probably be very reasuring for him to see that he can still be a kid even with the tube. It would also be good for to meet the parents of a child with a g-tube. They can tell you first hand about their experience and what is involved on a daily basis.

My brother had a g-tube put in when he was about 10. It was remarkable how much weight he put on and how much he grew! He felt better, missed less school and was a completely different kid health-wise.

Good luck!
 
T

thefrogprincess

New member
You may have to take a few weeks or so off during your son's recovery period but I don't really see any reason that you should have to stop working. Also if he has the tube he may qualify for SSI benefits (depending on how much you make as a family).

Anyway, having him meet with someone at the hospital is a good idea but I would also find out if you could arrange for him to meet another child around his age who has a g-tube. It would probably be very reasuring for him to see that he can still be a kid even with the tube. It would also be good for to meet the parents of a child with a g-tube. They can tell you first hand about their experience and what is involved on a daily basis.

My brother had a g-tube put in when he was about 10. It was remarkable how much weight he put on and how much he grew! He felt better, missed less school and was a completely different kid health-wise.

Good luck!
 
T

thefrogprincess

New member
You may have to take a few weeks or so off during your son's recovery period but I don't really see any reason that you should have to stop working. Also if he has the tube he may qualify for SSI benefits (depending on how much you make as a family).

Anyway, having him meet with someone at the hospital is a good idea but I would also find out if you could arrange for him to meet another child around his age who has a g-tube. It would probably be very reasuring for him to see that he can still be a kid even with the tube. It would also be good for to meet the parents of a child with a g-tube. They can tell you first hand about their experience and what is involved on a daily basis.

My brother had a g-tube put in when he was about 10. It was remarkable how much weight he put on and how much he grew! He felt better, missed less school and was a completely different kid health-wise.

Good luck!
 
K

kandi

New member
I too was wondering why you would have to stop working. My son had a feeding tube put in last Jan(06). I took a week off of work to let him recover. Then the school helped out. The teachers and me got together and took him out of pe for the rest of the year for safety sake and we got extra books for home and school so he wouldn't have to carry heavy books he was in the sixth grade at the time. I did cut down to four days instead of five but that was only so I could keep my income down to keep him on ssi. I don't care if he gets only a dollar a month but the medicaid I have to have it. As everyone knows the medical and medicine expensives can be over welming. I know that it may seem to much to take in and the thought of a g-tube can be scary but the benefits in the end can be well worth it. My son was twelve almost thirteen at the time and only weighed 65 lbs and no matter what we tried he couldn't gain weight and if he got sick it didn't take much for him to drop five to ten lbs which was really bad considering he already was so small. By the end of 06 almost a year later he is up to 90lbs has grew three inches (maybe more) and his lung functions are picking up. Like everyone else said the child life people are a big help. My doctors nurse was the one who brought in the doll was a big help to ease not only my son's mind but mine. All I could picture was the worse and after that we were but at ease. A lot of parents even learn to change the tube themselves. As for us the surgeon who did the tube still changes it. I scheldule him an appt every three months when we go to the see the pulmonologist. I hope everything works out well for you.
 
K

kandi

New member
I too was wondering why you would have to stop working. My son had a feeding tube put in last Jan(06). I took a week off of work to let him recover. Then the school helped out. The teachers and me got together and took him out of pe for the rest of the year for safety sake and we got extra books for home and school so he wouldn't have to carry heavy books he was in the sixth grade at the time. I did cut down to four days instead of five but that was only so I could keep my income down to keep him on ssi. I don't care if he gets only a dollar a month but the medicaid I have to have it. As everyone knows the medical and medicine expensives can be over welming. I know that it may seem to much to take in and the thought of a g-tube can be scary but the benefits in the end can be well worth it. My son was twelve almost thirteen at the time and only weighed 65 lbs and no matter what we tried he couldn't gain weight and if he got sick it didn't take much for him to drop five to ten lbs which was really bad considering he already was so small. By the end of 06 almost a year later he is up to 90lbs has grew three inches (maybe more) and his lung functions are picking up. Like everyone else said the child life people are a big help. My doctors nurse was the one who brought in the doll was a big help to ease not only my son's mind but mine. All I could picture was the worse and after that we were but at ease. A lot of parents even learn to change the tube themselves. As for us the surgeon who did the tube still changes it. I scheldule him an appt every three months when we go to the see the pulmonologist. I hope everything works out well for you.
 
K

kandi

New member
I too was wondering why you would have to stop working. My son had a feeding tube put in last Jan(06). I took a week off of work to let him recover. Then the school helped out. The teachers and me got together and took him out of pe for the rest of the year for safety sake and we got extra books for home and school so he wouldn't have to carry heavy books he was in the sixth grade at the time. I did cut down to four days instead of five but that was only so I could keep my income down to keep him on ssi. I don't care if he gets only a dollar a month but the medicaid I have to have it. As everyone knows the medical and medicine expensives can be over welming. I know that it may seem to much to take in and the thought of a g-tube can be scary but the benefits in the end can be well worth it. My son was twelve almost thirteen at the time and only weighed 65 lbs and no matter what we tried he couldn't gain weight and if he got sick it didn't take much for him to drop five to ten lbs which was really bad considering he already was so small. By the end of 06 almost a year later he is up to 90lbs has grew three inches (maybe more) and his lung functions are picking up. Like everyone else said the child life people are a big help. My doctors nurse was the one who brought in the doll was a big help to ease not only my son's mind but mine. All I could picture was the worse and after that we were but at ease. A lot of parents even learn to change the tube themselves. As for us the surgeon who did the tube still changes it. I scheldule him an appt every three months when we go to the see the pulmonologist. I hope everything works out well for you.
 
J

Jane

Digital opinion leader
It is much less dramatic than you would expect (physically). I was pretty freaked out about it too. Both my sons got theirs 3 years ago. They were already in the hospital for an extended clean-out and the docs just sprung g-tubes on us without much warning. The GI nurse did instruct them. It helped me to go see another kid with a G-tube. I wanted to see how a real one looked and how the kid had gotten used to it.

My younger son was very affected by the invasion of his body. He became depressed and ended up developing pneumonia from lack of movement after the surgery. I think it was from all of the problems which arose during the hospitalization combined, not just the surgery. It is now just routine and not at all a concern. Weight gain has been good.

I'm not sure what I would recommend in addition to the other suggestions. He needs to know it is not because of his failure. It is also helpful to know (for the family), that is really does take the pressure off eating during the day.

Please Private Message me if you have questions. I understand how scary it is.
 
J

Jane

Digital opinion leader
It is much less dramatic than you would expect (physically). I was pretty freaked out about it too. Both my sons got theirs 3 years ago. They were already in the hospital for an extended clean-out and the docs just sprung g-tubes on us without much warning. The GI nurse did instruct them. It helped me to go see another kid with a G-tube. I wanted to see how a real one looked and how the kid had gotten used to it.

My younger son was very affected by the invasion of his body. He became depressed and ended up developing pneumonia from lack of movement after the surgery. I think it was from all of the problems which arose during the hospitalization combined, not just the surgery. It is now just routine and not at all a concern. Weight gain has been good.

I'm not sure what I would recommend in addition to the other suggestions. He needs to know it is not because of his failure. It is also helpful to know (for the family), that is really does take the pressure off eating during the day.

Please Private Message me if you have questions. I understand how scary it is.
 
J

Jane

Digital opinion leader
It is much less dramatic than you would expect (physically). I was pretty freaked out about it too. Both my sons got theirs 3 years ago. They were already in the hospital for an extended clean-out and the docs just sprung g-tubes on us without much warning. The GI nurse did instruct them. It helped me to go see another kid with a G-tube. I wanted to see how a real one looked and how the kid had gotten used to it.

My younger son was very affected by the invasion of his body. He became depressed and ended up developing pneumonia from lack of movement after the surgery. I think it was from all of the problems which arose during the hospitalization combined, not just the surgery. It is now just routine and not at all a concern. Weight gain has been good.

I'm not sure what I would recommend in addition to the other suggestions. He needs to know it is not because of his failure. It is also helpful to know (for the family), that is really does take the pressure off eating during the day.

Please Private Message me if you have questions. I understand how scary it is.
 
F

farmfamily

New member
My son who will be 15 in 2 months got a g-tube 10 years ago. I had never heard of a feeding tube for acf patient ( now it is very common) They showedusa film witha child with one He was severly mentally and physicaly handicapped (you can imagine how that made him feel. He got one after much hesitation on my part. He gained 11 lbs the first year. It is harder on his self image now that he is a teenager than it was then but i think deep down heknows how much it helps him. My daughter who is 10 had never struggled so much withher weight therefore it's never been mentioned.

Terri mom to 3
 
F

farmfamily

New member
My son who will be 15 in 2 months got a g-tube 10 years ago. I had never heard of a feeding tube for acf patient ( now it is very common) They showedusa film witha child with one He was severly mentally and physicaly handicapped (you can imagine how that made him feel. He got one after much hesitation on my part. He gained 11 lbs the first year. It is harder on his self image now that he is a teenager than it was then but i think deep down heknows how much it helps him. My daughter who is 10 had never struggled so much withher weight therefore it's never been mentioned.

Terri mom to 3
 
You must log in or register to reply here.
Top