questions for those with G-tube fed kids

Mommafirst · Sep 9, 2008

Even though I have a list a mile long of reasons why I don't want to get Alyssa a g-tube the ONE reason on the pro side is out weighing the rest. Our CF docs says that her current growth curve is inadequate to grow her lungs to an optimal size and give her the best fighting chance against this disease.

I have a bazillion questions and the docs don't really answer the more life-centered ones. Can any of you answer these for me?? Your answers won't change my decision, I just want to know what we are getting into. I appreciate your honesty!!

1. How long and how painful is the recovery really?

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.

7. How hard is traveling with all the equipment?

8. How expensive is everything? Does insurance usually cover it all?

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.

10. Is there anything I'm not asking about that is important for me to know?

I hope you don't all think I'm being selfish about this. I'm so sad that she has to go through this, and I'm sad that I have to as well. It seems that this is going to be a big turning point for all of us, one I'd do anything to avoid.

Thanks for your input.

Mommafirst · Sep 9, 2008

Even though I have a list a mile long of reasons why I don't want to get Alyssa a g-tube the ONE reason on the pro side is out weighing the rest. Our CF docs says that her current growth curve is inadequate to grow her lungs to an optimal size and give her the best fighting chance against this disease.

I have a bazillion questions and the docs don't really answer the more life-centered ones. Can any of you answer these for me?? Your answers won't change my decision, I just want to know what we are getting into. I appreciate your honesty!!

1. How long and how painful is the recovery really?

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.

7. How hard is traveling with all the equipment?

8. How expensive is everything? Does insurance usually cover it all?

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.

10. Is there anything I'm not asking about that is important for me to know?

I hope you don't all think I'm being selfish about this. I'm so sad that she has to go through this, and I'm sad that I have to as well. It seems that this is going to be a big turning point for all of us, one I'd do anything to avoid.

Thanks for your input.

Mommafirst · Sep 9, 2008

Even though I have a list a mile long of reasons why I don't want to get Alyssa a g-tube the ONE reason on the pro side is out weighing the rest. Our CF docs says that her current growth curve is inadequate to grow her lungs to an optimal size and give her the best fighting chance against this disease.

I have a bazillion questions and the docs don't really answer the more life-centered ones. Can any of you answer these for me?? Your answers won't change my decision, I just want to know what we are getting into. I appreciate your honesty!!

1. How long and how painful is the recovery really?

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.

7. How hard is traveling with all the equipment?

8. How expensive is everything? Does insurance usually cover it all?

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.

10. Is there anything I'm not asking about that is important for me to know?

I hope you don't all think I'm being selfish about this. I'm so sad that she has to go through this, and I'm sad that I have to as well. It seems that this is going to be a big turning point for all of us, one I'd do anything to avoid.

Thanks for your input.

Mommafirst · Sep 9, 2008

Even though I have a list a mile long of reasons why I don't want to get Alyssa a g-tube the ONE reason on the pro side is out weighing the rest. Our CF docs says that her current growth curve is inadequate to grow her lungs to an optimal size and give her the best fighting chance against this disease.

I have a bazillion questions and the docs don't really answer the more life-centered ones. Can any of you answer these for me?? Your answers won't change my decision, I just want to know what we are getting into. I appreciate your honesty!!

1. How long and how painful is the recovery really?

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.

7. How hard is traveling with all the equipment?

8. How expensive is everything? Does insurance usually cover it all?

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.

10. Is there anything I'm not asking about that is important for me to know?

I hope you don't all think I'm being selfish about this. I'm so sad that she has to go through this, and I'm sad that I have to as well. It seems that this is going to be a big turning point for all of us, one I'd do anything to avoid.

Thanks for your input.

Mommafirst · Sep 9, 2008

Even though I have a list a mile long of reasons why I don't want to get Alyssa a g-tube the ONE reason on the pro side is out weighing the rest. Our CF docs says that her current growth curve is inadequate to grow her lungs to an optimal size and give her the best fighting chance against this disease.
 
 I have a bazillion questions and the docs don't really answer the more life-centered ones. Can any of you answer these for me?? Your answers won't change my decision, I just want to know what we are getting into. I appreciate your honesty!!
 
 1. How long and how painful is the recovery really?
 
 2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
 
 3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
 
 4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
 
 5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
 
 6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
 
 7. How hard is traveling with all the equipment?
 
 8. How expensive is everything? Does insurance usually cover it all?
 
 9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
 
 10. Is there anything I'm not asking about that is important for me to know?
 
 
 I hope you don't all think I'm being selfish about this. I'm so sad that she has to go through this, and I'm sad that I have to as well. It seems that this is going to be a big turning point for all of us, one I'd do anything to avoid.
 
 Thanks for your input.

sdelorenzo · Sep 9, 2008

My daughter got a g-tube about a yr and a half ago. She had fallen to -5% bmi and today at her appt she was 75% bmi. To see the difference in her appearance doesn't even compare to any inconveniences the g-tube might cause. To see her chubby legs and body is such a blessing. She now has a pink coloring to her skin where before she didn't. I find it easier to care for the gtube than the masks and neb cubs I have to sterilize each day. I know that your concerns are very much like mine were and most parents have. But honestly, once she has it and starts to gain weight easily, you will think "why didn't we do this a long time ago?"

1. How long and how painful is the recovery really?
*My daughter also has a nissan fundoplication at the same time. She was home two days later and was upset she couldn't jump on the trampoline that afternoon. After a day and half she was back 100%. She never has been bothered one bit by her g-tube button. She was on the swim team this summer and you don't notice it under her suit.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
*I don't find it disgusting. It doesn't leak. She doesn't throw up from it and never has had an upset stomach from her night feeds.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
*Don't make it a big deal.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
*I have a little 3-M plastic hook that I put on my daughters wall. I hang the bag from there. So there is no pole. Her pump is the size of my hand and is portable (zevex infinity - love it!). I put it under her bed during the day. So, during the day, you don't see any medical equipment.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
*She calls for me once a night to go to the bathroom. I think she it has spilled probably 3 times during the night. My daughter doesn't move around much at night, so she doesn't get tangled.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
*We leave her with her two grandmothers quite often. They learned how to do it.

7. How hard is traveling with all the equipment?
*The cans weigh a bit. But the bags and pump are light.

8. How expensive is everything? Does insurance usually cover it all?
*Our insurance pays for it.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
*Not sure about preschools. Not sure why it would be an issue since she won't do feeds there.

Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 9, 2008

My daughter got a g-tube about a yr and a half ago. She had fallen to -5% bmi and today at her appt she was 75% bmi. To see the difference in her appearance doesn't even compare to any inconveniences the g-tube might cause. To see her chubby legs and body is such a blessing. She now has a pink coloring to her skin where before she didn't. I find it easier to care for the gtube than the masks and neb cubs I have to sterilize each day. I know that your concerns are very much like mine were and most parents have. But honestly, once she has it and starts to gain weight easily, you will think "why didn't we do this a long time ago?"

1. How long and how painful is the recovery really?
*My daughter also has a nissan fundoplication at the same time. She was home two days later and was upset she couldn't jump on the trampoline that afternoon. After a day and half she was back 100%. She never has been bothered one bit by her g-tube button. She was on the swim team this summer and you don't notice it under her suit.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
*I don't find it disgusting. It doesn't leak. She doesn't throw up from it and never has had an upset stomach from her night feeds.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
*Don't make it a big deal.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
*I have a little 3-M plastic hook that I put on my daughters wall. I hang the bag from there. So there is no pole. Her pump is the size of my hand and is portable (zevex infinity - love it!). I put it under her bed during the day. So, during the day, you don't see any medical equipment.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
*She calls for me once a night to go to the bathroom. I think she it has spilled probably 3 times during the night. My daughter doesn't move around much at night, so she doesn't get tangled.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
*We leave her with her two grandmothers quite often. They learned how to do it.

7. How hard is traveling with all the equipment?
*The cans weigh a bit. But the bags and pump are light.

8. How expensive is everything? Does insurance usually cover it all?
*Our insurance pays for it.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
*Not sure about preschools. Not sure why it would be an issue since she won't do feeds there.

Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 9, 2008

My daughter got a g-tube about a yr and a half ago. She had fallen to -5% bmi and today at her appt she was 75% bmi. To see the difference in her appearance doesn't even compare to any inconveniences the g-tube might cause. To see her chubby legs and body is such a blessing. She now has a pink coloring to her skin where before she didn't. I find it easier to care for the gtube than the masks and neb cubs I have to sterilize each day. I know that your concerns are very much like mine were and most parents have. But honestly, once she has it and starts to gain weight easily, you will think "why didn't we do this a long time ago?"

1. How long and how painful is the recovery really?
*My daughter also has a nissan fundoplication at the same time. She was home two days later and was upset she couldn't jump on the trampoline that afternoon. After a day and half she was back 100%. She never has been bothered one bit by her g-tube button. She was on the swim team this summer and you don't notice it under her suit.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
*I don't find it disgusting. It doesn't leak. She doesn't throw up from it and never has had an upset stomach from her night feeds.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
*Don't make it a big deal.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
*I have a little 3-M plastic hook that I put on my daughters wall. I hang the bag from there. So there is no pole. Her pump is the size of my hand and is portable (zevex infinity - love it!). I put it under her bed during the day. So, during the day, you don't see any medical equipment.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
*She calls for me once a night to go to the bathroom. I think she it has spilled probably 3 times during the night. My daughter doesn't move around much at night, so she doesn't get tangled.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
*We leave her with her two grandmothers quite often. They learned how to do it.

7. How hard is traveling with all the equipment?
*The cans weigh a bit. But the bags and pump are light.

8. How expensive is everything? Does insurance usually cover it all?
*Our insurance pays for it.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
*Not sure about preschools. Not sure why it would be an issue since she won't do feeds there.

Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 9, 2008

My daughter got a g-tube about a yr and a half ago. She had fallen to -5% bmi and today at her appt she was 75% bmi. To see the difference in her appearance doesn't even compare to any inconveniences the g-tube might cause. To see her chubby legs and body is such a blessing. She now has a pink coloring to her skin where before she didn't. I find it easier to care for the gtube than the masks and neb cubs I have to sterilize each day. I know that your concerns are very much like mine were and most parents have. But honestly, once she has it and starts to gain weight easily, you will think "why didn't we do this a long time ago?"

1. How long and how painful is the recovery really?
*My daughter also has a nissan fundoplication at the same time. She was home two days later and was upset she couldn't jump on the trampoline that afternoon. After a day and half she was back 100%. She never has been bothered one bit by her g-tube button. She was on the swim team this summer and you don't notice it under her suit.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
*I don't find it disgusting. It doesn't leak. She doesn't throw up from it and never has had an upset stomach from her night feeds.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
*Don't make it a big deal.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
*I have a little 3-M plastic hook that I put on my daughters wall. I hang the bag from there. So there is no pole. Her pump is the size of my hand and is portable (zevex infinity - love it!). I put it under her bed during the day. So, during the day, you don't see any medical equipment.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
*She calls for me once a night to go to the bathroom. I think she it has spilled probably 3 times during the night. My daughter doesn't move around much at night, so she doesn't get tangled.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
*We leave her with her two grandmothers quite often. They learned how to do it.

7. How hard is traveling with all the equipment?
*The cans weigh a bit. But the bags and pump are light.

8. How expensive is everything? Does insurance usually cover it all?
*Our insurance pays for it.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
*Not sure about preschools. Not sure why it would be an issue since she won't do feeds there.

Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 9, 2008

My daughter got a g-tube about a yr and a half ago. She had fallen to -5% bmi and today at her appt she was 75% bmi. To see the difference in her appearance doesn't even compare to any inconveniences the g-tube might cause. To see her chubby legs and body is such a blessing. She now has a pink coloring to her skin where before she didn't. I find it easier to care for the gtube than the masks and neb cubs I have to sterilize each day. I know that your concerns are very much like mine were and most parents have. But honestly, once she has it and starts to gain weight easily, you will think "why didn't we do this a long time ago?"
 
 1. How long and how painful is the recovery really?
 *My daughter also has a nissan fundoplication at the same time. She was home two days later and was upset she couldn't jump on the trampoline that afternoon. After a day and half she was back 100%. She never has been bothered one bit by her g-tube button. She was on the swim team this summer and you don't notice it under her suit.
 
 2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
 *I don't find it disgusting. It doesn't leak. She doesn't throw up from it and never has had an upset stomach from her night feeds.
 
 3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
 *Don't make it a big deal.
 
 4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
 *I have a little 3-M plastic hook that I put on my daughters wall. I hang the bag from there. So there is no pole. Her pump is the size of my hand and is portable (zevex infinity - love it!). I put it under her bed during the day. So, during the day, you don't see any medical equipment.
 
 5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
 *She calls for me once a night to go to the bathroom. I think she it has spilled probably 3 times during the night. My daughter doesn't move around much at night, so she doesn't get tangled.
 
 6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
 *We leave her with her two grandmothers quite often. They learned how to do it.
 
 7. How hard is traveling with all the equipment?
 *The cans weigh a bit. But the bags and pump are light.
 
 8. How expensive is everything? Does insurance usually cover it all?
 *Our insurance pays for it.
 
 9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
 *Not sure about preschools. Not sure why it would be an issue since she won't do feeds there.
 
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sassy81172 · Sep 9, 2008

My son is 4 and has had a g-tube since he was about 6 months old. He is in preschool. I have just explained the mic-key button to them, and they know that if anything happens with it, to call me immediately. It is certainly helping with his weight issues. We just use it 3 nights a week right now. I would just tell her that it's no big deal, but it is just something else to help her stay healthy and strong. My brother-in-law is a body-builder, (and an ER doc), and I tell him that it will help him be strong like his uncle! We use Just for Kids formula, which is in boxes, that look like a juice box. Traveling is no big deal if you get a portable feeding pump. Ours has a little backpack that it fits in. I just strap it to a bed rail so that it won't fall over during the night. Because of the type of formula we use, I only have to get up if there is a kink in the tube, or to turn it off when it's done. I put him in Goodnights diapers when he's on the pump. That way I don't have to worry about him trying to get up and forget to take the pump with him. My mom kept him last year for 4 days while my husband and I took a 10th anniversary vacation. She had no problem working the pump. It just takes a little getting used to, but it's no big deal. The only thing my mom won't do is change his mic-key button, but neither will my husband!

I wish you the best of luck in your decision. I know it's not easy to know what to do, but you'll make the right choice.

sassy81172 · Sep 9, 2008

My son is 4 and has had a g-tube since he was about 6 months old. He is in preschool. I have just explained the mic-key button to them, and they know that if anything happens with it, to call me immediately. It is certainly helping with his weight issues. We just use it 3 nights a week right now. I would just tell her that it's no big deal, but it is just something else to help her stay healthy and strong. My brother-in-law is a body-builder, (and an ER doc), and I tell him that it will help him be strong like his uncle! We use Just for Kids formula, which is in boxes, that look like a juice box. Traveling is no big deal if you get a portable feeding pump. Ours has a little backpack that it fits in. I just strap it to a bed rail so that it won't fall over during the night. Because of the type of formula we use, I only have to get up if there is a kink in the tube, or to turn it off when it's done. I put him in Goodnights diapers when he's on the pump. That way I don't have to worry about him trying to get up and forget to take the pump with him. My mom kept him last year for 4 days while my husband and I took a 10th anniversary vacation. She had no problem working the pump. It just takes a little getting used to, but it's no big deal. The only thing my mom won't do is change his mic-key button, but neither will my husband!

I wish you the best of luck in your decision. I know it's not easy to know what to do, but you'll make the right choice.

sassy81172 · Sep 9, 2008

My son is 4 and has had a g-tube since he was about 6 months old. He is in preschool. I have just explained the mic-key button to them, and they know that if anything happens with it, to call me immediately. It is certainly helping with his weight issues. We just use it 3 nights a week right now. I would just tell her that it's no big deal, but it is just something else to help her stay healthy and strong. My brother-in-law is a body-builder, (and an ER doc), and I tell him that it will help him be strong like his uncle! We use Just for Kids formula, which is in boxes, that look like a juice box. Traveling is no big deal if you get a portable feeding pump. Ours has a little backpack that it fits in. I just strap it to a bed rail so that it won't fall over during the night. Because of the type of formula we use, I only have to get up if there is a kink in the tube, or to turn it off when it's done. I put him in Goodnights diapers when he's on the pump. That way I don't have to worry about him trying to get up and forget to take the pump with him. My mom kept him last year for 4 days while my husband and I took a 10th anniversary vacation. She had no problem working the pump. It just takes a little getting used to, but it's no big deal. The only thing my mom won't do is change his mic-key button, but neither will my husband!

I wish you the best of luck in your decision. I know it's not easy to know what to do, but you'll make the right choice.

sassy81172 · Sep 9, 2008

My son is 4 and has had a g-tube since he was about 6 months old. He is in preschool. I have just explained the mic-key button to them, and they know that if anything happens with it, to call me immediately. It is certainly helping with his weight issues. We just use it 3 nights a week right now. I would just tell her that it's no big deal, but it is just something else to help her stay healthy and strong. My brother-in-law is a body-builder, (and an ER doc), and I tell him that it will help him be strong like his uncle! We use Just for Kids formula, which is in boxes, that look like a juice box. Traveling is no big deal if you get a portable feeding pump. Ours has a little backpack that it fits in. I just strap it to a bed rail so that it won't fall over during the night. Because of the type of formula we use, I only have to get up if there is a kink in the tube, or to turn it off when it's done. I put him in Goodnights diapers when he's on the pump. That way I don't have to worry about him trying to get up and forget to take the pump with him. My mom kept him last year for 4 days while my husband and I took a 10th anniversary vacation. She had no problem working the pump. It just takes a little getting used to, but it's no big deal. The only thing my mom won't do is change his mic-key button, but neither will my husband!

I wish you the best of luck in your decision. I know it's not easy to know what to do, but you'll make the right choice.

sassy81172 · Sep 9, 2008

My son is 4 and has had a g-tube since he was about 6 months old. He is in preschool. I have just explained the mic-key button to them, and they know that if anything happens with it, to call me immediately. It is certainly helping with his weight issues. We just use it 3 nights a week right now. I would just tell her that it's no big deal, but it is just something else to help her stay healthy and strong. My brother-in-law is a body-builder, (and an ER doc), and I tell him that it will help him be strong like his uncle! We use Just for Kids formula, which is in boxes, that look like a juice box. Traveling is no big deal if you get a portable feeding pump. Ours has a little backpack that it fits in. I just strap it to a bed rail so that it won't fall over during the night. Because of the type of formula we use, I only have to get up if there is a kink in the tube, or to turn it off when it's done. I put him in Goodnights diapers when he's on the pump. That way I don't have to worry about him trying to get up and forget to take the pump with him. My mom kept him last year for 4 days while my husband and I took a 10th anniversary vacation. She had no problem working the pump. It just takes a little getting used to, but it's no big deal. The only thing my mom won't do is change his mic-key button, but neither will my husband!
 
 I wish you the best of luck in your decision. I know it's not easy to know what to do, but you'll make the right choice.

JennyCoulon · Sep 9, 2008

The g button I think is a very good thing. It did wonders for my 8 year old who got his about 2 years ago. As for your questions I will try and shed some light based on our experience.

1. How long and how painful is the recovery really?
* He got his on Tuesday and we were about to go home on Friday am. He had to recover at home but it wasn't bad.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
* It isn't that disgusting I mean you deal with it if you have to. The only time that I have had leakage is when he is hooked to his line and it is not clamped. He had issues with the tissue around the stoma but with a cream treatment and them having to cut it off one time it healed and we haven't had an issue with it since. My son never throws up, they do say that you have to decide on a fundo but we chose not to and it seems to be the right decision.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
* I would just tell them this is what she needs to help her gain weight. Our youngest is 3 and also has CF he knows what Mason's button is and that he can't pull on it or anything. The nurses will be able to explain it to them and be able to answer any questions that they have. Our surgeon was willing to do that when he came in to check on Mason.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
* Mason has a IV pole that the bag hangs on and then we have a special container with 4 drawers that the milk goes in. Most of Mason's friends know about it but we have put it in the closet when his friends are there. Most kids that have the g button usually get 1-2 nights off a week so she wouldn't have to do it when her friends are there.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
* We get everything set up and it just runs 150 ml all night and then in the morning when it is done it beeps and I get up and turn it off. I allow about 12 inches of slack from his button and then where it connects I tuck that under the edge of his pillow. It allows him to have extra line if need be but it isn't by his neck. As far as the full night of sleep I can't help you there b/c once I had kids I have never gotten another one. It should be something that you just hook up and it is good until the morning.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
* Mason spend the weekend with my mom in Kansas and we just packed up and took it. We just showed her how to do it. This maybe one good for one of the nights that she has off.

7. How hard is traveling with all the equipment?
* Traveling isn't difficult you can just put a box of milk and then the bags in a bag and then grab the pole that folds up with the pump on it. It isn't difficult at all.

8. How expensive is everything? Does insurance usually cover it all?
* It can be expensive but if you have insurance they really should cover just like anything else.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
* The nurse at Mason's school is aware of it and actually had to switch it out one time in the very beginning when we waited about 4 months to switch it out and it popped. We have now learned to switch it out at home every 3 months. IF he has an issue with it he can always go to the office, the 2 secretaries in there also know about it. We also keep an extra button at school just in case.

10. Is there anything I'm not asking about that is important for me to know?
* You may ask if the CF clinic has the baby that they can show you how the button goes in. It is helpful for you and also maybe for the siblings. I would suggest that if they do have to get it that you still let them be a kid. Mason plays soccer and confronts the ball, wrestles, etc. Also I would suggest buying a zip up sheet for the box spring and the mattress to go in so if it does leak then it won't ruin the bed.

Let me know if you do have any other questions that I can answer.

JennyCoulon · Sep 9, 2008

The g button I think is a very good thing. It did wonders for my 8 year old who got his about 2 years ago. As for your questions I will try and shed some light based on our experience.

1. How long and how painful is the recovery really?
* He got his on Tuesday and we were about to go home on Friday am. He had to recover at home but it wasn't bad.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
* It isn't that disgusting I mean you deal with it if you have to. The only time that I have had leakage is when he is hooked to his line and it is not clamped. He had issues with the tissue around the stoma but with a cream treatment and them having to cut it off one time it healed and we haven't had an issue with it since. My son never throws up, they do say that you have to decide on a fundo but we chose not to and it seems to be the right decision.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
* I would just tell them this is what she needs to help her gain weight. Our youngest is 3 and also has CF he knows what Mason's button is and that he can't pull on it or anything. The nurses will be able to explain it to them and be able to answer any questions that they have. Our surgeon was willing to do that when he came in to check on Mason.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
* Mason has a IV pole that the bag hangs on and then we have a special container with 4 drawers that the milk goes in. Most of Mason's friends know about it but we have put it in the closet when his friends are there. Most kids that have the g button usually get 1-2 nights off a week so she wouldn't have to do it when her friends are there.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
* We get everything set up and it just runs 150 ml all night and then in the morning when it is done it beeps and I get up and turn it off. I allow about 12 inches of slack from his button and then where it connects I tuck that under the edge of his pillow. It allows him to have extra line if need be but it isn't by his neck. As far as the full night of sleep I can't help you there b/c once I had kids I have never gotten another one. It should be something that you just hook up and it is good until the morning.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
* Mason spend the weekend with my mom in Kansas and we just packed up and took it. We just showed her how to do it. This maybe one good for one of the nights that she has off.

7. How hard is traveling with all the equipment?
* Traveling isn't difficult you can just put a box of milk and then the bags in a bag and then grab the pole that folds up with the pump on it. It isn't difficult at all.

8. How expensive is everything? Does insurance usually cover it all?
* It can be expensive but if you have insurance they really should cover just like anything else.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
* The nurse at Mason's school is aware of it and actually had to switch it out one time in the very beginning when we waited about 4 months to switch it out and it popped. We have now learned to switch it out at home every 3 months. IF he has an issue with it he can always go to the office, the 2 secretaries in there also know about it. We also keep an extra button at school just in case.

10. Is there anything I'm not asking about that is important for me to know?
* You may ask if the CF clinic has the baby that they can show you how the button goes in. It is helpful for you and also maybe for the siblings. I would suggest that if they do have to get it that you still let them be a kid. Mason plays soccer and confronts the ball, wrestles, etc. Also I would suggest buying a zip up sheet for the box spring and the mattress to go in so if it does leak then it won't ruin the bed.

Let me know if you do have any other questions that I can answer.

JennyCoulon · Sep 9, 2008

The g button I think is a very good thing. It did wonders for my 8 year old who got his about 2 years ago. As for your questions I will try and shed some light based on our experience.

1. How long and how painful is the recovery really?
* He got his on Tuesday and we were about to go home on Friday am. He had to recover at home but it wasn't bad.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
* It isn't that disgusting I mean you deal with it if you have to. The only time that I have had leakage is when he is hooked to his line and it is not clamped. He had issues with the tissue around the stoma but with a cream treatment and them having to cut it off one time it healed and we haven't had an issue with it since. My son never throws up, they do say that you have to decide on a fundo but we chose not to and it seems to be the right decision.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
* I would just tell them this is what she needs to help her gain weight. Our youngest is 3 and also has CF he knows what Mason's button is and that he can't pull on it or anything. The nurses will be able to explain it to them and be able to answer any questions that they have. Our surgeon was willing to do that when he came in to check on Mason.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
* Mason has a IV pole that the bag hangs on and then we have a special container with 4 drawers that the milk goes in. Most of Mason's friends know about it but we have put it in the closet when his friends are there. Most kids that have the g button usually get 1-2 nights off a week so she wouldn't have to do it when her friends are there.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
* We get everything set up and it just runs 150 ml all night and then in the morning when it is done it beeps and I get up and turn it off. I allow about 12 inches of slack from his button and then where it connects I tuck that under the edge of his pillow. It allows him to have extra line if need be but it isn't by his neck. As far as the full night of sleep I can't help you there b/c once I had kids I have never gotten another one. It should be something that you just hook up and it is good until the morning.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
* Mason spend the weekend with my mom in Kansas and we just packed up and took it. We just showed her how to do it. This maybe one good for one of the nights that she has off.

7. How hard is traveling with all the equipment?
* Traveling isn't difficult you can just put a box of milk and then the bags in a bag and then grab the pole that folds up with the pump on it. It isn't difficult at all.

8. How expensive is everything? Does insurance usually cover it all?
* It can be expensive but if you have insurance they really should cover just like anything else.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
* The nurse at Mason's school is aware of it and actually had to switch it out one time in the very beginning when we waited about 4 months to switch it out and it popped. We have now learned to switch it out at home every 3 months. IF he has an issue with it he can always go to the office, the 2 secretaries in there also know about it. We also keep an extra button at school just in case.

10. Is there anything I'm not asking about that is important for me to know?
* You may ask if the CF clinic has the baby that they can show you how the button goes in. It is helpful for you and also maybe for the siblings. I would suggest that if they do have to get it that you still let them be a kid. Mason plays soccer and confronts the ball, wrestles, etc. Also I would suggest buying a zip up sheet for the box spring and the mattress to go in so if it does leak then it won't ruin the bed.

Let me know if you do have any other questions that I can answer.

JennyCoulon · Sep 9, 2008

The g button I think is a very good thing. It did wonders for my 8 year old who got his about 2 years ago. As for your questions I will try and shed some light based on our experience.

1. How long and how painful is the recovery really?
* He got his on Tuesday and we were about to go home on Friday am. He had to recover at home but it wasn't bad.

2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
* It isn't that disgusting I mean you deal with it if you have to. The only time that I have had leakage is when he is hooked to his line and it is not clamped. He had issues with the tissue around the stoma but with a cream treatment and them having to cut it off one time it healed and we haven't had an issue with it since. My son never throws up, they do say that you have to decide on a fundo but we chose not to and it seems to be the right decision.

3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
* I would just tell them this is what she needs to help her gain weight. Our youngest is 3 and also has CF he knows what Mason's button is and that he can't pull on it or anything. The nurses will be able to explain it to them and be able to answer any questions that they have. Our surgeon was willing to do that when he came in to check on Mason.

4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
* Mason has a IV pole that the bag hangs on and then we have a special container with 4 drawers that the milk goes in. Most of Mason's friends know about it but we have put it in the closet when his friends are there. Most kids that have the g button usually get 1-2 nights off a week so she wouldn't have to do it when her friends are there.

5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
* We get everything set up and it just runs 150 ml all night and then in the morning when it is done it beeps and I get up and turn it off. I allow about 12 inches of slack from his button and then where it connects I tuck that under the edge of his pillow. It allows him to have extra line if need be but it isn't by his neck. As far as the full night of sleep I can't help you there b/c once I had kids I have never gotten another one. It should be something that you just hook up and it is good until the morning.

6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
* Mason spend the weekend with my mom in Kansas and we just packed up and took it. We just showed her how to do it. This maybe one good for one of the nights that she has off.

7. How hard is traveling with all the equipment?
* Traveling isn't difficult you can just put a box of milk and then the bags in a bag and then grab the pole that folds up with the pump on it. It isn't difficult at all.

8. How expensive is everything? Does insurance usually cover it all?
* It can be expensive but if you have insurance they really should cover just like anything else.

9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
* The nurse at Mason's school is aware of it and actually had to switch it out one time in the very beginning when we waited about 4 months to switch it out and it popped. We have now learned to switch it out at home every 3 months. IF he has an issue with it he can always go to the office, the 2 secretaries in there also know about it. We also keep an extra button at school just in case.

10. Is there anything I'm not asking about that is important for me to know?
* You may ask if the CF clinic has the baby that they can show you how the button goes in. It is helpful for you and also maybe for the siblings. I would suggest that if they do have to get it that you still let them be a kid. Mason plays soccer and confronts the ball, wrestles, etc. Also I would suggest buying a zip up sheet for the box spring and the mattress to go in so if it does leak then it won't ruin the bed.

Let me know if you do have any other questions that I can answer.

JennyCoulon · Sep 9, 2008

The g button I think is a very good thing. It did wonders for my 8 year old who got his about 2 years ago. As for your questions I will try and shed some light based on our experience.
 
 1. How long and how painful is the recovery really?
 * He got his on Tuesday and we were about to go home on Friday am. He had to recover at home but it wasn't bad.
 
 2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
 * It isn't that disgusting I mean you deal with it if you have to. The only time that I have had leakage is when he is hooked to his line and it is not clamped. He had issues with the tissue around the stoma but with a cream treatment and them having to cut it off one time it healed and we haven't had an issue with it since. My son never throws up, they do say that you have to decide on a fundo but we chose not to and it seems to be the right decision.
 
 3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
 * I would just tell them this is what she needs to help her gain weight. Our youngest is 3 and also has CF he knows what Mason's button is and that he can't pull on it or anything. The nurses will be able to explain it to them and be able to answer any questions that they have. Our surgeon was willing to do that when he came in to check on Mason.
 
 4. How much equipment will take over her bedroom? Will she every be able to bring friends over without feeling like she is sharing her hospital room with them?
 * Mason has a IV pole that the bag hangs on and then we have a special container with 4 drawers that the milk goes in. Most of Mason's friends know about it but we have put it in the closet when his friends are there. Most kids that have the g button usually get 1-2 nights off a week so she wouldn't have to do it when her friends are there.
 
 5. How many times a night do I have to get up and deal with this? Can she get caught up or strangled in the tubing? Will I ever get a full nights sleep again?
 * We get everything set up and it just runs 150 ml all night and then in the morning when it is done it beeps and I get up and turn it off. I allow about 12 inches of slack from his button and then where it connects I tuck that under the edge of his pillow. It allows him to have extra line if need be but it isn't by his neck. As far as the full night of sleep I can't help you there b/c once I had kids I have never gotten another one. It should be something that you just hook up and it is good until the morning.
 
 6. Is it feasible to teach grandparents to do the feeds too? I'm wondering if anyone will even WANT to let my dd sleep there anymore.
 * Mason spend the weekend with my mom in Kansas and we just packed up and took it. We just showed her how to do it. This maybe one good for one of the nights that she has off.
 
 7. How hard is traveling with all the equipment?
 * Traveling isn't difficult you can just put a box of milk and then the bags in a bag and then grab the pole that folds up with the pump on it. It isn't difficult at all.
 
 8. How expensive is everything? Does insurance usually cover it all?
 * It can be expensive but if you have insurance they really should cover just like anything else.
 
 9. What about schools, will I find a hard time getting her into a pre-school? I know she won't do tube feeds at school, but the pre-school my son goes to won't take her anyway because they don't have a nurse so they won't take kids that take any meds.
 * The nurse at Mason's school is aware of it and actually had to switch it out one time in the very beginning when we waited about 4 months to switch it out and it popped. We have now learned to switch it out at home every 3 months. IF he has an issue with it he can always go to the office, the 2 secretaries in there also know about it. We also keep an extra button at school just in case.
 
 10. Is there anything I'm not asking about that is important for me to know?
 * You may ask if the CF clinic has the baby that they can show you how the button goes in. It is helpful for you and also maybe for the siblings. I would suggest that if they do have to get it that you still let them be a kid. Mason plays soccer and confronts the ball, wrestles, etc. Also I would suggest buying a zip up sheet for the box spring and the mattress to go in so if it does leak then it won't ruin the bed.
 
 Let me know if you do have any other questions that I can answer.

questions for those with G-tube fed kids

Mommafirst

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