G-tubes

[My3wsonsljj]

Hello,

It has been a really long time since I posted on the CF site. I really need some CF support this morning about G-tubes. I reviewed some older post about G-tubes and feedings. I have 9 year old twins that recieved a tube last Thursday. We were told this was a simple procedure and if it did not work out for our family it could be removed. Well, our boy's have entered a deep state of depression. They will not resume any normal activity, they would not go to school, they will not look at it and don't want us to look at it either. The first morning home one had blood running down his stomach from the insertion and had a panic attack (me as well) and then the next morning we awoke to him spitting up blood(another panic attack) This tube has taken the life out of them. All they want to do is lay on the couch with the TV on and not move. I am talking about boys that normally live outdoors(they are not TV kids). I feel so guilty. They only weigh 44 pounds and 46 pounds and at the clinic they have pushed for the tube for over a year. I finally agreed and now I feel like I have made the biggest mistake ever. Our whole family has been in an uproar all weekend. My husband is actually sick at his stomach and I also feel so depressed. I thought it was going to be much smaller than it actually is. I know they will recieve the mickey button in two months but what do we do in the meantime? I saw on the site how many people were impressed with the tube and I just wanted to get some advice on how to handle this. Did anyone have a child go through such a state of depression over their tube? Any recommendations on what to do? I feel so hopeless. I hope we have done the right thing. Any advice or support would be greatly appreciated. I also have another question is this an expense out of your own pocket or is your insurance paying for the formual. Our insurance denied coverage. Is there something I can do to get them to cover the cost. It is very expensive, especially for two. Thanks in advance for the support on this site. I have been here many times for hope and support. It has been awhile but I knew this is where I needed to turn. Please keep our family in your prayers.

Mom to CF twins and 1 CF free

 

[My3wsonsljj]

Hello,

It has been a really long time since I posted on the CF site. I really need some CF support this morning about G-tubes. I reviewed some older post about G-tubes and feedings. I have 9 year old twins that recieved a tube last Thursday. We were told this was a simple procedure and if it did not work out for our family it could be removed. Well, our boy's have entered a deep state of depression. They will not resume any normal activity, they would not go to school, they will not look at it and don't want us to look at it either. The first morning home one had blood running down his stomach from the insertion and had a panic attack (me as well) and then the next morning we awoke to him spitting up blood(another panic attack) This tube has taken the life out of them. All they want to do is lay on the couch with the TV on and not move. I am talking about boys that normally live outdoors(they are not TV kids). I feel so guilty. They only weigh 44 pounds and 46 pounds and at the clinic they have pushed for the tube for over a year. I finally agreed and now I feel like I have made the biggest mistake ever. Our whole family has been in an uproar all weekend. My husband is actually sick at his stomach and I also feel so depressed. I thought it was going to be much smaller than it actually is. I know they will recieve the mickey button in two months but what do we do in the meantime? I saw on the site how many people were impressed with the tube and I just wanted to get some advice on how to handle this. Did anyone have a child go through such a state of depression over their tube? Any recommendations on what to do? I feel so hopeless. I hope we have done the right thing. Any advice or support would be greatly appreciated. I also have another question is this an expense out of your own pocket or is your insurance paying for the formual. Our insurance denied coverage. Is there something I can do to get them to cover the cost. It is very expensive, especially for two. Thanks in advance for the support on this site. I have been here many times for hope and support. It has been awhile but I knew this is where I needed to turn. Please keep our family in your prayers.

Mom to CF twins and 1 CF free

 

[My3wsonsljj]

Hello,

It has been a really long time since I posted on the CF site. I really need some CF support this morning about G-tubes. I reviewed some older post about G-tubes and feedings. I have 9 year old twins that recieved a tube last Thursday. We were told this was a simple procedure and if it did not work out for our family it could be removed. Well, our boy's have entered a deep state of depression. They will not resume any normal activity, they would not go to school, they will not look at it and don't want us to look at it either. The first morning home one had blood running down his stomach from the insertion and had a panic attack (me as well) and then the next morning we awoke to him spitting up blood(another panic attack) This tube has taken the life out of them. All they want to do is lay on the couch with the TV on and not move. I am talking about boys that normally live outdoors(they are not TV kids). I feel so guilty. They only weigh 44 pounds and 46 pounds and at the clinic they have pushed for the tube for over a year. I finally agreed and now I feel like I have made the biggest mistake ever. Our whole family has been in an uproar all weekend. My husband is actually sick at his stomach and I also feel so depressed. I thought it was going to be much smaller than it actually is. I know they will recieve the mickey button in two months but what do we do in the meantime? I saw on the site how many people were impressed with the tube and I just wanted to get some advice on how to handle this. Did anyone have a child go through such a state of depression over their tube? Any recommendations on what to do? I feel so hopeless. I hope we have done the right thing. Any advice or support would be greatly appreciated. I also have another question is this an expense out of your own pocket or is your insurance paying for the formual. Our insurance denied coverage. Is there something I can do to get them to cover the cost. It is very expensive, especially for two. Thanks in advance for the support on this site. I have been here many times for hope and support. It has been awhile but I knew this is where I needed to turn. Please keep our family in your prayers.

Mom to CF twins and 1 CF free

 

[My3wsonsljj]

Hello,

It has been a really long time since I posted on the CF site. I really need some CF support this morning about G-tubes. I reviewed some older post about G-tubes and feedings. I have 9 year old twins that recieved a tube last Thursday. We were told this was a simple procedure and if it did not work out for our family it could be removed. Well, our boy's have entered a deep state of depression. They will not resume any normal activity, they would not go to school, they will not look at it and don't want us to look at it either. The first morning home one had blood running down his stomach from the insertion and had a panic attack (me as well) and then the next morning we awoke to him spitting up blood(another panic attack) This tube has taken the life out of them. All they want to do is lay on the couch with the TV on and not move. I am talking about boys that normally live outdoors(they are not TV kids). I feel so guilty. They only weigh 44 pounds and 46 pounds and at the clinic they have pushed for the tube for over a year. I finally agreed and now I feel like I have made the biggest mistake ever. Our whole family has been in an uproar all weekend. My husband is actually sick at his stomach and I also feel so depressed. I thought it was going to be much smaller than it actually is. I know they will recieve the mickey button in two months but what do we do in the meantime? I saw on the site how many people were impressed with the tube and I just wanted to get some advice on how to handle this. Did anyone have a child go through such a state of depression over their tube? Any recommendations on what to do? I feel so hopeless. I hope we have done the right thing. Any advice or support would be greatly appreciated. I also have another question is this an expense out of your own pocket or is your insurance paying for the formual. Our insurance denied coverage. Is there something I can do to get them to cover the cost. It is very expensive, especially for two. Thanks in advance for the support on this site. I have been here many times for hope and support. It has been awhile but I knew this is where I needed to turn. Please keep our family in your prayers.

Mom to CF twins and 1 CF free

 

[My3wsonsljj]

Hello,

It has been a really long time since I posted on the CF site. I really need some CF support this morning about G-tubes. I reviewed some older post about G-tubes and feedings. I have 9 year old twins that recieved a tube last Thursday. We were told this was a simple procedure and if it did not work out for our family it could be removed. Well, our boy's have entered a deep state of depression. They will not resume any normal activity, they would not go to school, they will not look at it and don't want us to look at it either. The first morning home one had blood running down his stomach from the insertion and had a panic attack (me as well) and then the next morning we awoke to him spitting up blood(another panic attack) This tube has taken the life out of them. All they want to do is lay on the couch with the TV on and not move. I am talking about boys that normally live outdoors(they are not TV kids). I feel so guilty. They only weigh 44 pounds and 46 pounds and at the clinic they have pushed for the tube for over a year. I finally agreed and now I feel like I have made the biggest mistake ever. Our whole family has been in an uproar all weekend. My husband is actually sick at his stomach and I also feel so depressed. I thought it was going to be much smaller than it actually is. I know they will recieve the mickey button in two months but what do we do in the meantime? I saw on the site how many people were impressed with the tube and I just wanted to get some advice on how to handle this. Did anyone have a child go through such a state of depression over their tube? Any recommendations on what to do? I feel so hopeless. I hope we have done the right thing. Any advice or support would be greatly appreciated. I also have another question is this an expense out of your own pocket or is your insurance paying for the formual. Our insurance denied coverage. Is there something I can do to get them to cover the cost. It is very expensive, especially for two. Thanks in advance for the support on this site. I have been here many times for hope and support. It has been awhile but I knew this is where I needed to turn. Please keep our family in your prayers.

Mom to CF twins and 1 CF free

 

[MOME2RT]

Lisa, Im sorry to hear about your boys. For Reece it was a piece of cake but he was 3 years old. Its a life altering experience, theres a foriegn object poking out of thier tummies. Im sure its gonna take some gettng use to. Just remind them that its gonna help them. I really dont have any suggestions.....sorry.

About the insurance thing. Reece has Medicaid, so they paid for everything. Maybe you can see about getting that or do you have a soicail worker at your clinic. Talk to her, maybe she knows some back doors you could go through.

Sorry if I wasnt much help. Hang in there! They are strong boys, they will get through this.

 

[MOME2RT]

Lisa, Im sorry to hear about your boys. For Reece it was a piece of cake but he was 3 years old. Its a life altering experience, theres a foriegn object poking out of thier tummies. Im sure its gonna take some gettng use to. Just remind them that its gonna help them. I really dont have any suggestions.....sorry.

About the insurance thing. Reece has Medicaid, so they paid for everything. Maybe you can see about getting that or do you have a soicail worker at your clinic. Talk to her, maybe she knows some back doors you could go through.

Sorry if I wasnt much help. Hang in there! They are strong boys, they will get through this.

 

[MOME2RT]

Lisa, Im sorry to hear about your boys. For Reece it was a piece of cake but he was 3 years old. Its a life altering experience, theres a foriegn object poking out of thier tummies. Im sure its gonna take some gettng use to. Just remind them that its gonna help them. I really dont have any suggestions.....sorry.

About the insurance thing. Reece has Medicaid, so they paid for everything. Maybe you can see about getting that or do you have a soicail worker at your clinic. Talk to her, maybe she knows some back doors you could go through.

Sorry if I wasnt much help. Hang in there! They are strong boys, they will get through this.

 

[MOME2RT]

Lisa, Im sorry to hear about your boys. For Reece it was a piece of cake but he was 3 years old. Its a life altering experience, theres a foriegn object poking out of thier tummies. Im sure its gonna take some gettng use to. Just remind them that its gonna help them. I really dont have any suggestions.....sorry.

About the insurance thing. Reece has Medicaid, so they paid for everything. Maybe you can see about getting that or do you have a soicail worker at your clinic. Talk to her, maybe she knows some back doors you could go through.

Sorry if I wasnt much help. Hang in there! They are strong boys, they will get through this.

 

[MOME2RT]

Lisa, Im sorry to hear about your boys. For Reece it was a piece of cake but he was 3 years old. Its a life altering experience, theres a foriegn object poking out of thier tummies. Im sure its gonna take some gettng use to. Just remind them that its gonna help them. I really dont have any suggestions.....sorry.

About the insurance thing. Reece has Medicaid, so they paid for everything. Maybe you can see about getting that or do you have a soicail worker at your clinic. Talk to her, maybe she knows some back doors you could go through.

Sorry if I wasnt much help. Hang in there! They are strong boys, they will get through this.

 

[sdelorenzo]

My daughter got her g-tube in March when she was 5 yrs old. I can only imagine that it would be hard on 9 yr old boys. My daughter had that long tube for a month. It was a HUGE pain. Why do they have to wait 2 months before they get the Mickey? Maybe you can see about getting it changed out quicker. A boy down the street from us has cf and he got a mickey button right away instead of the tube. My daughter has gained almost 10 pounds in 5 months with her g-tube (from 36 pounds to now 46 pounds). Just incredible to see the difference. She has rosy checks and looks healthy now. I know it might be challenging but you have to focus on the benefits of the g-tube. Having our kids at a good weight is essential to keeping them healthy in the long run. As you probably know an excellent predictor for lung health is bmi. Your kids also may be reacting to you a bit. Like you mentioned they see you having panic attacks, ready to give up and not 100% for it from the beginning. I will be praying for you. I know how hard it is to see our kids go through this, but try to look at the positive side. Your boys probably want to gain weight and be the same size as their friends, hav them concentrate on that. Also, my daughter did not gain ANY weight her first month. It was discouraging. But then the weight came on after that.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter got her g-tube in March when she was 5 yrs old. I can only imagine that it would be hard on 9 yr old boys. My daughter had that long tube for a month. It was a HUGE pain. Why do they have to wait 2 months before they get the Mickey? Maybe you can see about getting it changed out quicker. A boy down the street from us has cf and he got a mickey button right away instead of the tube. My daughter has gained almost 10 pounds in 5 months with her g-tube (from 36 pounds to now 46 pounds). Just incredible to see the difference. She has rosy checks and looks healthy now. I know it might be challenging but you have to focus on the benefits of the g-tube. Having our kids at a good weight is essential to keeping them healthy in the long run. As you probably know an excellent predictor for lung health is bmi. Your kids also may be reacting to you a bit. Like you mentioned they see you having panic attacks, ready to give up and not 100% for it from the beginning. I will be praying for you. I know how hard it is to see our kids go through this, but try to look at the positive side. Your boys probably want to gain weight and be the same size as their friends, hav them concentrate on that. Also, my daughter did not gain ANY weight her first month. It was discouraging. But then the weight came on after that.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter got her g-tube in March when she was 5 yrs old. I can only imagine that it would be hard on 9 yr old boys. My daughter had that long tube for a month. It was a HUGE pain. Why do they have to wait 2 months before they get the Mickey? Maybe you can see about getting it changed out quicker. A boy down the street from us has cf and he got a mickey button right away instead of the tube. My daughter has gained almost 10 pounds in 5 months with her g-tube (from 36 pounds to now 46 pounds). Just incredible to see the difference. She has rosy checks and looks healthy now. I know it might be challenging but you have to focus on the benefits of the g-tube. Having our kids at a good weight is essential to keeping them healthy in the long run. As you probably know an excellent predictor for lung health is bmi. Your kids also may be reacting to you a bit. Like you mentioned they see you having panic attacks, ready to give up and not 100% for it from the beginning. I will be praying for you. I know how hard it is to see our kids go through this, but try to look at the positive side. Your boys probably want to gain weight and be the same size as their friends, hav them concentrate on that. Also, my daughter did not gain ANY weight her first month. It was discouraging. But then the weight came on after that.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter got her g-tube in March when she was 5 yrs old. I can only imagine that it would be hard on 9 yr old boys. My daughter had that long tube for a month. It was a HUGE pain. Why do they have to wait 2 months before they get the Mickey? Maybe you can see about getting it changed out quicker. A boy down the street from us has cf and he got a mickey button right away instead of the tube. My daughter has gained almost 10 pounds in 5 months with her g-tube (from 36 pounds to now 46 pounds). Just incredible to see the difference. She has rosy checks and looks healthy now. I know it might be challenging but you have to focus on the benefits of the g-tube. Having our kids at a good weight is essential to keeping them healthy in the long run. As you probably know an excellent predictor for lung health is bmi. Your kids also may be reacting to you a bit. Like you mentioned they see you having panic attacks, ready to give up and not 100% for it from the beginning. I will be praying for you. I know how hard it is to see our kids go through this, but try to look at the positive side. Your boys probably want to gain weight and be the same size as their friends, hav them concentrate on that. Also, my daughter did not gain ANY weight her first month. It was discouraging. But then the weight came on after that.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter got her g-tube in March when she was 5 yrs old. I can only imagine that it would be hard on 9 yr old boys. My daughter had that long tube for a month. It was a HUGE pain. Why do they have to wait 2 months before they get the Mickey? Maybe you can see about getting it changed out quicker. A boy down the street from us has cf and he got a mickey button right away instead of the tube. My daughter has gained almost 10 pounds in 5 months with her g-tube (from 36 pounds to now 46 pounds). Just incredible to see the difference. She has rosy checks and looks healthy now. I know it might be challenging but you have to focus on the benefits of the g-tube. Having our kids at a good weight is essential to keeping them healthy in the long run. As you probably know an excellent predictor for lung health is bmi. Your kids also may be reacting to you a bit. Like you mentioned they see you having panic attacks, ready to give up and not 100% for it from the beginning. I will be praying for you. I know how hard it is to see our kids go through this, but try to look at the positive side. Your boys probably want to gain weight and be the same size as their friends, hav them concentrate on that. Also, my daughter did not gain ANY weight her first month. It was discouraging. But then the weight came on after that.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[Jane]

Lisa, I didn't even read the posts because I was so saddened after reading yours. My kids went throught the same thing. The good news is, it didn't last long.

Please please please get them on an anti-depressant ASAP!!!

My younger son (who was 9 at the time) developed pneumonia after his g-tube was placed because he wouldn't move off the couch. He was sooooo sad he told us he would never smile, EVER again. It was heartbreaking. Like you said, he wouldn't look at the tube without tears. When he was hospitalized again, I asked the social worker if we could have a psych evaluation. The wonderful psychiatrist who works with CF kids immediately prescribed zoloft. It was a turn-around. Our beautiful little boy returned within weeks.

Our older son (who was 13 at the time) bounced back right away, but had longer lasting effects of the surgery. He was cautious around his friends, so much so that he became isolated. After years of therapy and zoloft, he's turned around too.

It has been a struggle, but getting the g-tubes made a huge improvement in their over-all health, so I know we made the right choice. I would recommend getting a counselor and starting meds soon. If you don't already have one, talk to the social worker at your clinic.

My heart goes out to you Lisa. It's not an easy thing to see your kids going through this. Your boys will be ok, they just need some help getting over the hurdle.

Good luck. Please PM me with any questions you have. I'm happy to help.

 

[Jane]

Lisa, I didn't even read the posts because I was so saddened after reading yours. My kids went throught the same thing. The good news is, it didn't last long.

Please please please get them on an anti-depressant ASAP!!!

My younger son (who was 9 at the time) developed pneumonia after his g-tube was placed because he wouldn't move off the couch. He was sooooo sad he told us he would never smile, EVER again. It was heartbreaking. Like you said, he wouldn't look at the tube without tears. When he was hospitalized again, I asked the social worker if we could have a psych evaluation. The wonderful psychiatrist who works with CF kids immediately prescribed zoloft. It was a turn-around. Our beautiful little boy returned within weeks.

Our older son (who was 13 at the time) bounced back right away, but had longer lasting effects of the surgery. He was cautious around his friends, so much so that he became isolated. After years of therapy and zoloft, he's turned around too.

It has been a struggle, but getting the g-tubes made a huge improvement in their over-all health, so I know we made the right choice. I would recommend getting a counselor and starting meds soon. If you don't already have one, talk to the social worker at your clinic.

My heart goes out to you Lisa. It's not an easy thing to see your kids going through this. Your boys will be ok, they just need some help getting over the hurdle.

Good luck. Please PM me with any questions you have. I'm happy to help.

 

[Jane]

Lisa, I didn't even read the posts because I was so saddened after reading yours. My kids went throught the same thing. The good news is, it didn't last long.

Please please please get them on an anti-depressant ASAP!!!

My younger son (who was 9 at the time) developed pneumonia after his g-tube was placed because he wouldn't move off the couch. He was sooooo sad he told us he would never smile, EVER again. It was heartbreaking. Like you said, he wouldn't look at the tube without tears. When he was hospitalized again, I asked the social worker if we could have a psych evaluation. The wonderful psychiatrist who works with CF kids immediately prescribed zoloft. It was a turn-around. Our beautiful little boy returned within weeks.

Our older son (who was 13 at the time) bounced back right away, but had longer lasting effects of the surgery. He was cautious around his friends, so much so that he became isolated. After years of therapy and zoloft, he's turned around too.

It has been a struggle, but getting the g-tubes made a huge improvement in their over-all health, so I know we made the right choice. I would recommend getting a counselor and starting meds soon. If you don't already have one, talk to the social worker at your clinic.

My heart goes out to you Lisa. It's not an easy thing to see your kids going through this. Your boys will be ok, they just need some help getting over the hurdle.

Good luck. Please PM me with any questions you have. I'm happy to help.

 

[Jane]

Lisa, I didn't even read the posts because I was so saddened after reading yours. My kids went throught the same thing. The good news is, it didn't last long.

Please please please get them on an anti-depressant ASAP!!!

My younger son (who was 9 at the time) developed pneumonia after his g-tube was placed because he wouldn't move off the couch. He was sooooo sad he told us he would never smile, EVER again. It was heartbreaking. Like you said, he wouldn't look at the tube without tears. When he was hospitalized again, I asked the social worker if we could have a psych evaluation. The wonderful psychiatrist who works with CF kids immediately prescribed zoloft. It was a turn-around. Our beautiful little boy returned within weeks.

Our older son (who was 13 at the time) bounced back right away, but had longer lasting effects of the surgery. He was cautious around his friends, so much so that he became isolated. After years of therapy and zoloft, he's turned around too.

It has been a struggle, but getting the g-tubes made a huge improvement in their over-all health, so I know we made the right choice. I would recommend getting a counselor and starting meds soon. If you don't already have one, talk to the social worker at your clinic.

My heart goes out to you Lisa. It's not an easy thing to see your kids going through this. Your boys will be ok, they just need some help getting over the hurdle.

Good luck. Please PM me with any questions you have. I'm happy to help.

 

[Jane]

Lisa, I didn't even read the posts because I was so saddened after reading yours. My kids went throught the same thing. The good news is, it didn't last long.

Please please please get them on an anti-depressant ASAP!!!

My younger son (who was 9 at the time) developed pneumonia after his g-tube was placed because he wouldn't move off the couch. He was sooooo sad he told us he would never smile, EVER again. It was heartbreaking. Like you said, he wouldn't look at the tube without tears. When he was hospitalized again, I asked the social worker if we could have a psych evaluation. The wonderful psychiatrist who works with CF kids immediately prescribed zoloft. It was a turn-around. Our beautiful little boy returned within weeks.

Our older son (who was 13 at the time) bounced back right away, but had longer lasting effects of the surgery. He was cautious around his friends, so much so that he became isolated. After years of therapy and zoloft, he's turned around too.

It has been a struggle, but getting the g-tubes made a huge improvement in their over-all health, so I know we made the right choice. I would recommend getting a counselor and starting meds soon. If you don't already have one, talk to the social worker at your clinic.

My heart goes out to you Lisa. It's not an easy thing to see your kids going through this. Your boys will be ok, they just need some help getting over the hurdle.

Good luck. Please PM me with any questions you have. I'm happy to help.