G-tubes

[Jane]

I have to add some things.

It was terribly traumatic for our family. We were dead set against the g-tubes and we pushed into it while the kids were int he hospital. It was probably the worst time our family has faced. We got through it, you will too.

What formula do you use?

I will PM you with my email. I do understand what you're going through.

 

[Jane]

I have to add some things.

It was terribly traumatic for our family. We were dead set against the g-tubes and we pushed into it while the kids were int he hospital. It was probably the worst time our family has faced. We got through it, you will too.

What formula do you use?

I will PM you with my email. I do understand what you're going through.

 

[Jane]

I have to add some things.

It was terribly traumatic for our family. We were dead set against the g-tubes and we pushed into it while the kids were int he hospital. It was probably the worst time our family has faced. We got through it, you will too.

What formula do you use?

I will PM you with my email. I do understand what you're going through.

 

[Jane]

I have to add some things.

It was terribly traumatic for our family. We were dead set against the g-tubes and we pushed into it while the kids were int he hospital. It was probably the worst time our family has faced. We got through it, you will too.

What formula do you use?

I will PM you with my email. I do understand what you're going through.

 

[Jane]

I have to add some things.

It was terribly traumatic for our family. We were dead set against the g-tubes and we pushed into it while the kids were int he hospital. It was probably the worst time our family has faced. We got through it, you will too.

What formula do you use?

I will PM you with my email. I do understand what you're going through.

 

[Frankiesma]

My son got his g-tube last year when he was 10 yrs. old! He had a horrible few months before and after the tube. He was really depressed and angry over his health, hospitalizations, treatments and everything else CF related. I think that the huge tube hanging out of his stomach added to it!! It was rough but we got through it! I made him go to school(after he recovered of course), even if he was crying the whole way. I learned a couple years ago that if you give in on the not going to school thing once or twice It will become even harder! I very much agree with the above post about your reaction to these things. I have realized that when I am depressed or overwhelmed or angry, whatever, that Frankie becomes the same way! I try really hard now to make sure that I keep things positive around him and at the same time be compassionate. That seems to really keep his spirits up! I am trying to keep my emotional breakdowns to myself or actually walk outside call my mom and upset her too.............my neighbors probably think i'm nuts!!(on the phone crying all the time). After he had the mickey put in he feels so much better he had to wait 3 months. I was worried about the summer and the pool and stuff, but I found a great waterproof band-aid thing and he slaps that on and off he goes! He went from 52lbs to 68lbs~he has great coloring looks healthy. Our insurance covers the formula. He gets 4 cans of nutren 1.5 a day. Also check into grant programs that the state might have to cover what your insurance won't. In Illinois, we have DSCC which is for chronicly ill children. If you meet the income guidelines (you don't have to be in poverty like in any other state program, to qualify for this) then they pick up what is left including reimbursement for doc and prescription co-pays

Also try counseling, ask the ss worker at clinic or the ss worker at school. At the school I sat down with the nurse, ss worker, psychologist and teachers. They took his complete history, any concerns I had, we really covered everything!!! He never had any behaivoral problems at school but they worked on coping skills and anger management only because it was a concern at home not even at school. He gets tutoring after school after he is absent. I would really recommend just asking for help and fighting for anything that would help them. I wish I knew years ago that there is so many people that get paid to or are just wanting to help. Also there are some psychologist that specialize helping sick kids cope.

They also might be at the age where they are realizing how serious this is! It scares the hell out of me-I could only imagine how little kids feel!!

 

[Frankiesma]

My son got his g-tube last year when he was 10 yrs. old! He had a horrible few months before and after the tube. He was really depressed and angry over his health, hospitalizations, treatments and everything else CF related. I think that the huge tube hanging out of his stomach added to it!! It was rough but we got through it! I made him go to school(after he recovered of course), even if he was crying the whole way. I learned a couple years ago that if you give in on the not going to school thing once or twice It will become even harder! I very much agree with the above post about your reaction to these things. I have realized that when I am depressed or overwhelmed or angry, whatever, that Frankie becomes the same way! I try really hard now to make sure that I keep things positive around him and at the same time be compassionate. That seems to really keep his spirits up! I am trying to keep my emotional breakdowns to myself or actually walk outside call my mom and upset her too.............my neighbors probably think i'm nuts!!(on the phone crying all the time). After he had the mickey put in he feels so much better he had to wait 3 months. I was worried about the summer and the pool and stuff, but I found a great waterproof band-aid thing and he slaps that on and off he goes! He went from 52lbs to 68lbs~he has great coloring looks healthy. Our insurance covers the formula. He gets 4 cans of nutren 1.5 a day. Also check into grant programs that the state might have to cover what your insurance won't. In Illinois, we have DSCC which is for chronicly ill children. If you meet the income guidelines (you don't have to be in poverty like in any other state program, to qualify for this) then they pick up what is left including reimbursement for doc and prescription co-pays

Also try counseling, ask the ss worker at clinic or the ss worker at school. At the school I sat down with the nurse, ss worker, psychologist and teachers. They took his complete history, any concerns I had, we really covered everything!!! He never had any behaivoral problems at school but they worked on coping skills and anger management only because it was a concern at home not even at school. He gets tutoring after school after he is absent. I would really recommend just asking for help and fighting for anything that would help them. I wish I knew years ago that there is so many people that get paid to or are just wanting to help. Also there are some psychologist that specialize helping sick kids cope.

They also might be at the age where they are realizing how serious this is! It scares the hell out of me-I could only imagine how little kids feel!!

 

[Frankiesma]

My son got his g-tube last year when he was 10 yrs. old! He had a horrible few months before and after the tube. He was really depressed and angry over his health, hospitalizations, treatments and everything else CF related. I think that the huge tube hanging out of his stomach added to it!! It was rough but we got through it! I made him go to school(after he recovered of course), even if he was crying the whole way. I learned a couple years ago that if you give in on the not going to school thing once or twice It will become even harder! I very much agree with the above post about your reaction to these things. I have realized that when I am depressed or overwhelmed or angry, whatever, that Frankie becomes the same way! I try really hard now to make sure that I keep things positive around him and at the same time be compassionate. That seems to really keep his spirits up! I am trying to keep my emotional breakdowns to myself or actually walk outside call my mom and upset her too.............my neighbors probably think i'm nuts!!(on the phone crying all the time). After he had the mickey put in he feels so much better he had to wait 3 months. I was worried about the summer and the pool and stuff, but I found a great waterproof band-aid thing and he slaps that on and off he goes! He went from 52lbs to 68lbs~he has great coloring looks healthy. Our insurance covers the formula. He gets 4 cans of nutren 1.5 a day. Also check into grant programs that the state might have to cover what your insurance won't. In Illinois, we have DSCC which is for chronicly ill children. If you meet the income guidelines (you don't have to be in poverty like in any other state program, to qualify for this) then they pick up what is left including reimbursement for doc and prescription co-pays

Also try counseling, ask the ss worker at clinic or the ss worker at school. At the school I sat down with the nurse, ss worker, psychologist and teachers. They took his complete history, any concerns I had, we really covered everything!!! He never had any behaivoral problems at school but they worked on coping skills and anger management only because it was a concern at home not even at school. He gets tutoring after school after he is absent. I would really recommend just asking for help and fighting for anything that would help them. I wish I knew years ago that there is so many people that get paid to or are just wanting to help. Also there are some psychologist that specialize helping sick kids cope.

They also might be at the age where they are realizing how serious this is! It scares the hell out of me-I could only imagine how little kids feel!!

 

[Frankiesma]

My son got his g-tube last year when he was 10 yrs. old! He had a horrible few months before and after the tube. He was really depressed and angry over his health, hospitalizations, treatments and everything else CF related. I think that the huge tube hanging out of his stomach added to it!! It was rough but we got through it! I made him go to school(after he recovered of course), even if he was crying the whole way. I learned a couple years ago that if you give in on the not going to school thing once or twice It will become even harder! I very much agree with the above post about your reaction to these things. I have realized that when I am depressed or overwhelmed or angry, whatever, that Frankie becomes the same way! I try really hard now to make sure that I keep things positive around him and at the same time be compassionate. That seems to really keep his spirits up! I am trying to keep my emotional breakdowns to myself or actually walk outside call my mom and upset her too.............my neighbors probably think i'm nuts!!(on the phone crying all the time). After he had the mickey put in he feels so much better he had to wait 3 months. I was worried about the summer and the pool and stuff, but I found a great waterproof band-aid thing and he slaps that on and off he goes! He went from 52lbs to 68lbs~he has great coloring looks healthy. Our insurance covers the formula. He gets 4 cans of nutren 1.5 a day. Also check into grant programs that the state might have to cover what your insurance won't. In Illinois, we have DSCC which is for chronicly ill children. If you meet the income guidelines (you don't have to be in poverty like in any other state program, to qualify for this) then they pick up what is left including reimbursement for doc and prescription co-pays

Also try counseling, ask the ss worker at clinic or the ss worker at school. At the school I sat down with the nurse, ss worker, psychologist and teachers. They took his complete history, any concerns I had, we really covered everything!!! He never had any behaivoral problems at school but they worked on coping skills and anger management only because it was a concern at home not even at school. He gets tutoring after school after he is absent. I would really recommend just asking for help and fighting for anything that would help them. I wish I knew years ago that there is so many people that get paid to or are just wanting to help. Also there are some psychologist that specialize helping sick kids cope.

They also might be at the age where they are realizing how serious this is! It scares the hell out of me-I could only imagine how little kids feel!!

 

[Frankiesma]

My son got his g-tube last year when he was 10 yrs. old! He had a horrible few months before and after the tube. He was really depressed and angry over his health, hospitalizations, treatments and everything else CF related. I think that the huge tube hanging out of his stomach added to it!! It was rough but we got through it! I made him go to school(after he recovered of course), even if he was crying the whole way. I learned a couple years ago that if you give in on the not going to school thing once or twice It will become even harder! I very much agree with the above post about your reaction to these things. I have realized that when I am depressed or overwhelmed or angry, whatever, that Frankie becomes the same way! I try really hard now to make sure that I keep things positive around him and at the same time be compassionate. That seems to really keep his spirits up! I am trying to keep my emotional breakdowns to myself or actually walk outside call my mom and upset her too.............my neighbors probably think i'm nuts!!(on the phone crying all the time). After he had the mickey put in he feels so much better he had to wait 3 months. I was worried about the summer and the pool and stuff, but I found a great waterproof band-aid thing and he slaps that on and off he goes! He went from 52lbs to 68lbs~he has great coloring looks healthy. Our insurance covers the formula. He gets 4 cans of nutren 1.5 a day. Also check into grant programs that the state might have to cover what your insurance won't. In Illinois, we have DSCC which is for chronicly ill children. If you meet the income guidelines (you don't have to be in poverty like in any other state program, to qualify for this) then they pick up what is left including reimbursement for doc and prescription co-pays

Also try counseling, ask the ss worker at clinic or the ss worker at school. At the school I sat down with the nurse, ss worker, psychologist and teachers. They took his complete history, any concerns I had, we really covered everything!!! He never had any behaivoral problems at school but they worked on coping skills and anger management only because it was a concern at home not even at school. He gets tutoring after school after he is absent. I would really recommend just asking for help and fighting for anything that would help them. I wish I knew years ago that there is so many people that get paid to or are just wanting to help. Also there are some psychologist that specialize helping sick kids cope.

They also might be at the age where they are realizing how serious this is! It scares the hell out of me-I could only imagine how little kids feel!!

 

[cysticfibrosisgirl]

I have the Moss long GJ-tube. it has helped me allot. it has helped keep my pounds from jumping all over. I hope things get better with your boys I will be getting a Mic-key in a few more weeks first comes my port-a-catch

 

[cysticfibrosisgirl]

I have the Moss long GJ-tube. it has helped me allot. it has helped keep my pounds from jumping all over. I hope things get better with your boys I will be getting a Mic-key in a few more weeks first comes my port-a-catch

 

[cysticfibrosisgirl]

I have the Moss long GJ-tube. it has helped me allot. it has helped keep my pounds from jumping all over. I hope things get better with your boys I will be getting a Mic-key in a few more weeks first comes my port-a-catch

 

[cysticfibrosisgirl]

I have the Moss long GJ-tube. it has helped me allot. it has helped keep my pounds from jumping all over. I hope things get better with your boys I will be getting a Mic-key in a few more weeks first comes my port-a-catch

 

[cysticfibrosisgirl]

I have the Moss long GJ-tube. it has helped me allot. it has helped keep my pounds from jumping all over. I hope things get better with your boys I will be getting a Mic-key in a few more weeks first comes my port-a-catch

 

[izemmom]

My daughter has had a g-tube for about 3 1/2 weeks now. She is onlly 21 months, so it's a very different experience. I have to say, I can not iimagine how hard it is for your boys. I would be in tears too, if I were them, and I COMPLETLY understand the panic over the blood. We have a panic situation every couple of days as the site heals, then tears, then heals, etc.

I think Jane is the Lady to listen to on this one. (And, of course, the others who responded) THe anti-depressants seem like a good idea. I know that it probably seems like a giant step to take, but then so is the g-tube. It really is life altering, and for me at least, the clinic totally lost site of that fact. Your boys need to know that this IS a big deal, but it's a good thing. Recognize the fact that they are hurting emotionally and physically. It could be that this is the first time they were old enough to really be hit by the realities of cf. Nothing like a tube in your tummy to show you what this disease can really do!

As far as the formula, we are still waiting to see what our coverage will be. But, our dietician did mention that Pediasure has a grant progam that would cover at least part of your costs if we have to do more than 50% out of pocket. Or, something like that. So, ask your center staff, and contact the manufacturer of the formula. They may have a program.

I will keep your boys in my thoughts. ANd you, too. The care and maintenece of the g-tube is NOT easy. I am stressed just wondering if I'm doing things right and wondering if I'm doing more harm than good.

Please post more often and let us know how things are going.

 

[izemmom]

My daughter has had a g-tube for about 3 1/2 weeks now. She is onlly 21 months, so it's a very different experience. I have to say, I can not iimagine how hard it is for your boys. I would be in tears too, if I were them, and I COMPLETLY understand the panic over the blood. We have a panic situation every couple of days as the site heals, then tears, then heals, etc.

I think Jane is the Lady to listen to on this one. (And, of course, the others who responded) THe anti-depressants seem like a good idea. I know that it probably seems like a giant step to take, but then so is the g-tube. It really is life altering, and for me at least, the clinic totally lost site of that fact. Your boys need to know that this IS a big deal, but it's a good thing. Recognize the fact that they are hurting emotionally and physically. It could be that this is the first time they were old enough to really be hit by the realities of cf. Nothing like a tube in your tummy to show you what this disease can really do!

As far as the formula, we are still waiting to see what our coverage will be. But, our dietician did mention that Pediasure has a grant progam that would cover at least part of your costs if we have to do more than 50% out of pocket. Or, something like that. So, ask your center staff, and contact the manufacturer of the formula. They may have a program.

I will keep your boys in my thoughts. ANd you, too. The care and maintenece of the g-tube is NOT easy. I am stressed just wondering if I'm doing things right and wondering if I'm doing more harm than good.

Please post more often and let us know how things are going.

 

[izemmom]

My daughter has had a g-tube for about 3 1/2 weeks now. She is onlly 21 months, so it's a very different experience. I have to say, I can not iimagine how hard it is for your boys. I would be in tears too, if I were them, and I COMPLETLY understand the panic over the blood. We have a panic situation every couple of days as the site heals, then tears, then heals, etc.

I think Jane is the Lady to listen to on this one. (And, of course, the others who responded) THe anti-depressants seem like a good idea. I know that it probably seems like a giant step to take, but then so is the g-tube. It really is life altering, and for me at least, the clinic totally lost site of that fact. Your boys need to know that this IS a big deal, but it's a good thing. Recognize the fact that they are hurting emotionally and physically. It could be that this is the first time they were old enough to really be hit by the realities of cf. Nothing like a tube in your tummy to show you what this disease can really do!

As far as the formula, we are still waiting to see what our coverage will be. But, our dietician did mention that Pediasure has a grant progam that would cover at least part of your costs if we have to do more than 50% out of pocket. Or, something like that. So, ask your center staff, and contact the manufacturer of the formula. They may have a program.

I will keep your boys in my thoughts. ANd you, too. The care and maintenece of the g-tube is NOT easy. I am stressed just wondering if I'm doing things right and wondering if I'm doing more harm than good.

Please post more often and let us know how things are going.

 

[izemmom]

My daughter has had a g-tube for about 3 1/2 weeks now. She is onlly 21 months, so it's a very different experience. I have to say, I can not iimagine how hard it is for your boys. I would be in tears too, if I were them, and I COMPLETLY understand the panic over the blood. We have a panic situation every couple of days as the site heals, then tears, then heals, etc.

I think Jane is the Lady to listen to on this one. (And, of course, the others who responded) THe anti-depressants seem like a good idea. I know that it probably seems like a giant step to take, but then so is the g-tube. It really is life altering, and for me at least, the clinic totally lost site of that fact. Your boys need to know that this IS a big deal, but it's a good thing. Recognize the fact that they are hurting emotionally and physically. It could be that this is the first time they were old enough to really be hit by the realities of cf. Nothing like a tube in your tummy to show you what this disease can really do!

As far as the formula, we are still waiting to see what our coverage will be. But, our dietician did mention that Pediasure has a grant progam that would cover at least part of your costs if we have to do more than 50% out of pocket. Or, something like that. So, ask your center staff, and contact the manufacturer of the formula. They may have a program.

I will keep your boys in my thoughts. ANd you, too. The care and maintenece of the g-tube is NOT easy. I am stressed just wondering if I'm doing things right and wondering if I'm doing more harm than good.

Please post more often and let us know how things are going.

 

[izemmom]

My daughter has had a g-tube for about 3 1/2 weeks now. She is onlly 21 months, so it's a very different experience. I have to say, I can not iimagine how hard it is for your boys. I would be in tears too, if I were them, and I COMPLETLY understand the panic over the blood. We have a panic situation every couple of days as the site heals, then tears, then heals, etc.

I think Jane is the Lady to listen to on this one. (And, of course, the others who responded) THe anti-depressants seem like a good idea. I know that it probably seems like a giant step to take, but then so is the g-tube. It really is life altering, and for me at least, the clinic totally lost site of that fact. Your boys need to know that this IS a big deal, but it's a good thing. Recognize the fact that they are hurting emotionally and physically. It could be that this is the first time they were old enough to really be hit by the realities of cf. Nothing like a tube in your tummy to show you what this disease can really do!

As far as the formula, we are still waiting to see what our coverage will be. But, our dietician did mention that Pediasure has a grant progam that would cover at least part of your costs if we have to do more than 50% out of pocket. Or, something like that. So, ask your center staff, and contact the manufacturer of the formula. They may have a program.

I will keep your boys in my thoughts. ANd you, too. The care and maintenece of the g-tube is NOT easy. I am stressed just wondering if I'm doing things right and wondering if I'm doing more harm than good.

Please post more often and let us know how things are going.