questions for those with G-tube fed kids

Jane · Sep 9, 2008

I hope all the responses have helped make it easier to understand, but it won't really sink in until you live with it.

There are only a few things I wanted to add. My two boys have had their g-tubes for 4 years. They have gone to overnight camp and vacations with their equipment. It seems like a lot to handle, but like anything else, you just make it work. Once we shipped a case of formula to our family vacation so we didn't have to lug it on the plane. We've also used boost in a pinch.

Like Sharon, we don't use a pole. We just have a hook in the window frame next to their bed. It takes up less room.

For us it has been literally a life-saver. Good luck

Jane · Sep 9, 2008

I hope all the responses have helped make it easier to understand, but it won't really sink in until you live with it.

There are only a few things I wanted to add. My two boys have had their g-tubes for 4 years. They have gone to overnight camp and vacations with their equipment. It seems like a lot to handle, but like anything else, you just make it work. Once we shipped a case of formula to our family vacation so we didn't have to lug it on the plane. We've also used boost in a pinch.

Like Sharon, we don't use a pole. We just have a hook in the window frame next to their bed. It takes up less room.

For us it has been literally a life-saver. Good luck

Jane · Sep 9, 2008

I hope all the responses have helped make it easier to understand, but it won't really sink in until you live with it.

There are only a few things I wanted to add. My two boys have had their g-tubes for 4 years. They have gone to overnight camp and vacations with their equipment. It seems like a lot to handle, but like anything else, you just make it work. Once we shipped a case of formula to our family vacation so we didn't have to lug it on the plane. We've also used boost in a pinch.

Like Sharon, we don't use a pole. We just have a hook in the window frame next to their bed. It takes up less room.

For us it has been literally a life-saver. Good luck

Jane · Sep 9, 2008

I hope all the responses have helped make it easier to understand, but it won't really sink in until you live with it.

There are only a few things I wanted to add. My two boys have had their g-tubes for 4 years. They have gone to overnight camp and vacations with their equipment. It seems like a lot to handle, but like anything else, you just make it work. Once we shipped a case of formula to our family vacation so we didn't have to lug it on the plane. We've also used boost in a pinch.

Like Sharon, we don't use a pole. We just have a hook in the window frame next to their bed. It takes up less room.

For us it has been literally a life-saver. Good luck

Jane · Sep 9, 2008

I hope all the responses have helped make it easier to understand, but it won't really sink in until you live with it.
 
 There are only a few things I wanted to add. My two boys have had their g-tubes for 4 years. They have gone to overnight camp and vacations with their equipment. It seems like a lot to handle, but like anything else, you just make it work. Once we shipped a case of formula to our family vacation so we didn't have to lug it on the plane. We've also used boost in a pinch.
 
 Like Sharon, we don't use a pole. We just have a hook in the window frame next to their bed. It takes up less room.
 
 For us it has been literally a life-saver. Good luck

izemmom · Sep 10, 2008

I didn't take the time to read all your previous responses, so forgive any repeats...

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

The hardest part of the recovery for us was coming off the anesthia. Emily never reacts well to it, so she was pretty groggy most of the next day. After that, she was up and running around. She pulled at the tube maybe once or twice, but other than that she didn't have any discomfort.

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

Hardly disgusting at all, as hard as that is to beleive. I accidently left the tube unclamped once while I was putting her jammies on her, and she grabbed the tube and started sucking on it like a straw. SHe ended up with a mouth full of stomach juice. Now, THAT was disgusting and I had to leave the room and throw up, but other than that, we've neer had issues.

If Emily has a cold or more than her baseline cough, she will sometimes throw up in the morning (from coughing) when her tummy is really full. Other than that, she doesn't throw up more than usual. (But, her usual is WAAAAAY more than most kids.)

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

Emily now knows (and tells others) that her tube is so she can get extra food while she sleeps, so her body will be strong and healthy. When she got it, we told Isabelle (then almost 5) that Emily needed some help getting all the food her body needed. We said that the doctors were going to put in a tube that we would hook up to a machine at night and that would help give Emily what she needed. I don't remember giving her more of an explanation. She didn't really think twice about it, and even now, if people ask about it (or stare, like some idiot at the pool this summer) Isabelle just says, "that's Emily's tube. It helps her stay healthy."

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?

Ummm. Yeah. The STUFF. This was the kicker for me. The first months' supplies were dropped off while we were still at the hospital. I came home to a stack of boxes filled with enough stuff to stock a small pharmacy. We converted one half of Em's closet to a storage area for ALL of her CF related stuff. The cases of formula do take up room, and the feeding bags. But the rest is not too bad. Let me know if you want to see a picture of her closet to get an idea. The pump it self is not bad. We have kids over ALL the time playing in her room, and I"m not sure anyone has ever asked about it. I don't even think about the stand and the pump being in there anymore. I'm so used to it it just blends in.

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?

This was my big fear, too. We never have to get up for tube stuff. Only if she is coughing a lot, or cries, or something. But, I sleep very well, thank you very much! I was SURE she'd get tangled and pull the thing out or wake herself up, but it has NEVER happened. I have watched her untangle herself in her sleep. I think the body just adjusts. Once in a while (very rarely) the machine will alarm in the middle of the night, if there's a kink in the line or something. But that's usually an easy fix.

Some people have mentioned that they have to get up to administer enzymes. I don't get that, becasue according to our docs, you shouldn't have to, depending on what you use. Talk to the docs about this and insist on something that will allow you to put the enzyme in with the formula. We currently use Viokase.

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.

Yep. Entirely possible to teach grandparents. And, in our case, aunts and uncles, grown up cousins, neighbors and friends. No one that I've asked has had a problem with it. I make it a point to teach lots of people, because if something ever happened to me or my husband, I'd want to be sure that someone could give Emily the care she needs.

7. How hard is traveling with all the equipment?

We've only done car trips so far. (First flight will be next June). The stuff takes up room, but other than that it's not hard.

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

Pricey. We have our standard co-pay for everything, but if we had to pay out of pocket, we'd be hurtin'. The formula and enzyme are not cheap. Our latest statement shows that the full cost of a month's formula is $225. Times 12 for a year... *sigh*

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.

I've said this a lot in other posts, but our daycare (now preschool...yikes, my baby is in preschool!) has been great. I suppose I will worry a bit more when she starts kindergarten, but I really don't think that having a tube should hurt her in that way. I'm curious how your son's pre-school stays open. It seems that most of the kids we know are on some type of medication! In Emily's class there is one other kid with a g-tube (it was just removed, actually), severe asthma, a thyroid problem (meds with every meal), a liver condition (daily meds)... I guess we are lucky???

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

Walk through the ENTIRE process with the docs, nurses, and someone who will care for her in the hospital after the procedure. Our single biggest problem (and my breaking point) was that after the tube went in NOONE who cared for us that night and next day could find the right adapter to connect the tube in Emily's tummy to the tube on the feeding set (bag). We had leaks all night long and I was angry. THey promised it wouldn't be like that. All night long I kept saying that they must be missing a part because any idiot could see that hte two parts didn't hook up right. It took until noon the next day to get anywhere. So, ask to see exactly what will happen. Ask to see the pump, the bags, the formula. Get a good idea of what to expect before she goes in.

Ask if she will get a PEG first. That's the long tube. Ours stayed in for about 6 - 8 weeks. It was not convienient, but it wasn't too bad, either. If she ends up with this, I've got some tricks to share that worked well for us to keep it out of her way.

Some clinics go right to the MicKey button or bard button. Ours didn't because the GI who put it in feels that the PEG helps build up the stomach muscle which helps to keep the MicKey in place later. He found that kids who went straight to the MicKey pulled their tubes out much more often that those that started with the long tube. That was all the reason I needed! By the way, Emily has NEVER pulled her tube out. I did, once, accidently. Talk about feeling HORRIBLE!!!! But, she slept through it.

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.

Of course you know already that I, for one, do not think you are being selfish. I felt, too, that it was going to be a big turnig point. I felt that the tube would some how change us, and the way others saw us. I had my selfish petty fears. (not saying that yours are...just that I realized after it was all said and done that I was afraid for MYSELF as much as for Emily). Now, I can look back and see that we are still just us. Emily is still Emily. We treat the tube like it's not a big deal, and it isn't. There is no way that you can know that it will all be ok until you live through it. THis is the biggest deal you have to go through, so far. But, it really will be ok.

Hmmm. I wish I could, just once, give a SHORT answer to one of your posts. SOrry!

izemmom · Sep 10, 2008

I didn't take the time to read all your previous responses, so forgive any repeats...

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

The hardest part of the recovery for us was coming off the anesthia. Emily never reacts well to it, so she was pretty groggy most of the next day. After that, she was up and running around. She pulled at the tube maybe once or twice, but other than that she didn't have any discomfort.

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

Hardly disgusting at all, as hard as that is to beleive. I accidently left the tube unclamped once while I was putting her jammies on her, and she grabbed the tube and started sucking on it like a straw. SHe ended up with a mouth full of stomach juice. Now, THAT was disgusting and I had to leave the room and throw up, but other than that, we've neer had issues.

If Emily has a cold or more than her baseline cough, she will sometimes throw up in the morning (from coughing) when her tummy is really full. Other than that, she doesn't throw up more than usual. (But, her usual is WAAAAAY more than most kids.)

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

Emily now knows (and tells others) that her tube is so she can get extra food while she sleeps, so her body will be strong and healthy. When she got it, we told Isabelle (then almost 5) that Emily needed some help getting all the food her body needed. We said that the doctors were going to put in a tube that we would hook up to a machine at night and that would help give Emily what she needed. I don't remember giving her more of an explanation. She didn't really think twice about it, and even now, if people ask about it (or stare, like some idiot at the pool this summer) Isabelle just says, "that's Emily's tube. It helps her stay healthy."

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?

Ummm. Yeah. The STUFF. This was the kicker for me. The first months' supplies were dropped off while we were still at the hospital. I came home to a stack of boxes filled with enough stuff to stock a small pharmacy. We converted one half of Em's closet to a storage area for ALL of her CF related stuff. The cases of formula do take up room, and the feeding bags. But the rest is not too bad. Let me know if you want to see a picture of her closet to get an idea. The pump it self is not bad. We have kids over ALL the time playing in her room, and I"m not sure anyone has ever asked about it. I don't even think about the stand and the pump being in there anymore. I'm so used to it it just blends in.

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?

This was my big fear, too. We never have to get up for tube stuff. Only if she is coughing a lot, or cries, or something. But, I sleep very well, thank you very much! I was SURE she'd get tangled and pull the thing out or wake herself up, but it has NEVER happened. I have watched her untangle herself in her sleep. I think the body just adjusts. Once in a while (very rarely) the machine will alarm in the middle of the night, if there's a kink in the line or something. But that's usually an easy fix.

Some people have mentioned that they have to get up to administer enzymes. I don't get that, becasue according to our docs, you shouldn't have to, depending on what you use. Talk to the docs about this and insist on something that will allow you to put the enzyme in with the formula. We currently use Viokase.

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.

Yep. Entirely possible to teach grandparents. And, in our case, aunts and uncles, grown up cousins, neighbors and friends. No one that I've asked has had a problem with it. I make it a point to teach lots of people, because if something ever happened to me or my husband, I'd want to be sure that someone could give Emily the care she needs.

7. How hard is traveling with all the equipment?

We've only done car trips so far. (First flight will be next June). The stuff takes up room, but other than that it's not hard.

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

Pricey. We have our standard co-pay for everything, but if we had to pay out of pocket, we'd be hurtin'. The formula and enzyme are not cheap. Our latest statement shows that the full cost of a month's formula is $225. Times 12 for a year... *sigh*

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.

I've said this a lot in other posts, but our daycare (now preschool...yikes, my baby is in preschool!) has been great. I suppose I will worry a bit more when she starts kindergarten, but I really don't think that having a tube should hurt her in that way. I'm curious how your son's pre-school stays open. It seems that most of the kids we know are on some type of medication! In Emily's class there is one other kid with a g-tube (it was just removed, actually), severe asthma, a thyroid problem (meds with every meal), a liver condition (daily meds)... I guess we are lucky???

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

Walk through the ENTIRE process with the docs, nurses, and someone who will care for her in the hospital after the procedure. Our single biggest problem (and my breaking point) was that after the tube went in NOONE who cared for us that night and next day could find the right adapter to connect the tube in Emily's tummy to the tube on the feeding set (bag). We had leaks all night long and I was angry. THey promised it wouldn't be like that. All night long I kept saying that they must be missing a part because any idiot could see that hte two parts didn't hook up right. It took until noon the next day to get anywhere. So, ask to see exactly what will happen. Ask to see the pump, the bags, the formula. Get a good idea of what to expect before she goes in.

Ask if she will get a PEG first. That's the long tube. Ours stayed in for about 6 - 8 weeks. It was not convienient, but it wasn't too bad, either. If she ends up with this, I've got some tricks to share that worked well for us to keep it out of her way.

Some clinics go right to the MicKey button or bard button. Ours didn't because the GI who put it in feels that the PEG helps build up the stomach muscle which helps to keep the MicKey in place later. He found that kids who went straight to the MicKey pulled their tubes out much more often that those that started with the long tube. That was all the reason I needed! By the way, Emily has NEVER pulled her tube out. I did, once, accidently. Talk about feeling HORRIBLE!!!! But, she slept through it.

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.

Of course you know already that I, for one, do not think you are being selfish. I felt, too, that it was going to be a big turnig point. I felt that the tube would some how change us, and the way others saw us. I had my selfish petty fears. (not saying that yours are...just that I realized after it was all said and done that I was afraid for MYSELF as much as for Emily). Now, I can look back and see that we are still just us. Emily is still Emily. We treat the tube like it's not a big deal, and it isn't. There is no way that you can know that it will all be ok until you live through it. THis is the biggest deal you have to go through, so far. But, it really will be ok.

Hmmm. I wish I could, just once, give a SHORT answer to one of your posts. SOrry!

izemmom · Sep 10, 2008

I didn't take the time to read all your previous responses, so forgive any repeats...

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

The hardest part of the recovery for us was coming off the anesthia. Emily never reacts well to it, so she was pretty groggy most of the next day. After that, she was up and running around. She pulled at the tube maybe once or twice, but other than that she didn't have any discomfort.

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

Hardly disgusting at all, as hard as that is to beleive. I accidently left the tube unclamped once while I was putting her jammies on her, and she grabbed the tube and started sucking on it like a straw. SHe ended up with a mouth full of stomach juice. Now, THAT was disgusting and I had to leave the room and throw up, but other than that, we've neer had issues.

If Emily has a cold or more than her baseline cough, she will sometimes throw up in the morning (from coughing) when her tummy is really full. Other than that, she doesn't throw up more than usual. (But, her usual is WAAAAAY more than most kids.)

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

Emily now knows (and tells others) that her tube is so she can get extra food while she sleeps, so her body will be strong and healthy. When she got it, we told Isabelle (then almost 5) that Emily needed some help getting all the food her body needed. We said that the doctors were going to put in a tube that we would hook up to a machine at night and that would help give Emily what she needed. I don't remember giving her more of an explanation. She didn't really think twice about it, and even now, if people ask about it (or stare, like some idiot at the pool this summer) Isabelle just says, "that's Emily's tube. It helps her stay healthy."

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?

Ummm. Yeah. The STUFF. This was the kicker for me. The first months' supplies were dropped off while we were still at the hospital. I came home to a stack of boxes filled with enough stuff to stock a small pharmacy. We converted one half of Em's closet to a storage area for ALL of her CF related stuff. The cases of formula do take up room, and the feeding bags. But the rest is not too bad. Let me know if you want to see a picture of her closet to get an idea. The pump it self is not bad. We have kids over ALL the time playing in her room, and I"m not sure anyone has ever asked about it. I don't even think about the stand and the pump being in there anymore. I'm so used to it it just blends in.

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?

This was my big fear, too. We never have to get up for tube stuff. Only if she is coughing a lot, or cries, or something. But, I sleep very well, thank you very much! I was SURE she'd get tangled and pull the thing out or wake herself up, but it has NEVER happened. I have watched her untangle herself in her sleep. I think the body just adjusts. Once in a while (very rarely) the machine will alarm in the middle of the night, if there's a kink in the line or something. But that's usually an easy fix.

Some people have mentioned that they have to get up to administer enzymes. I don't get that, becasue according to our docs, you shouldn't have to, depending on what you use. Talk to the docs about this and insist on something that will allow you to put the enzyme in with the formula. We currently use Viokase.

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.

Yep. Entirely possible to teach grandparents. And, in our case, aunts and uncles, grown up cousins, neighbors and friends. No one that I've asked has had a problem with it. I make it a point to teach lots of people, because if something ever happened to me or my husband, I'd want to be sure that someone could give Emily the care she needs.

7. How hard is traveling with all the equipment?

We've only done car trips so far. (First flight will be next June). The stuff takes up room, but other than that it's not hard.

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

Pricey. We have our standard co-pay for everything, but if we had to pay out of pocket, we'd be hurtin'. The formula and enzyme are not cheap. Our latest statement shows that the full cost of a month's formula is $225. Times 12 for a year... *sigh*

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.

I've said this a lot in other posts, but our daycare (now preschool...yikes, my baby is in preschool!) has been great. I suppose I will worry a bit more when she starts kindergarten, but I really don't think that having a tube should hurt her in that way. I'm curious how your son's pre-school stays open. It seems that most of the kids we know are on some type of medication! In Emily's class there is one other kid with a g-tube (it was just removed, actually), severe asthma, a thyroid problem (meds with every meal), a liver condition (daily meds)... I guess we are lucky???

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

Walk through the ENTIRE process with the docs, nurses, and someone who will care for her in the hospital after the procedure. Our single biggest problem (and my breaking point) was that after the tube went in NOONE who cared for us that night and next day could find the right adapter to connect the tube in Emily's tummy to the tube on the feeding set (bag). We had leaks all night long and I was angry. THey promised it wouldn't be like that. All night long I kept saying that they must be missing a part because any idiot could see that hte two parts didn't hook up right. It took until noon the next day to get anywhere. So, ask to see exactly what will happen. Ask to see the pump, the bags, the formula. Get a good idea of what to expect before she goes in.

Ask if she will get a PEG first. That's the long tube. Ours stayed in for about 6 - 8 weeks. It was not convienient, but it wasn't too bad, either. If she ends up with this, I've got some tricks to share that worked well for us to keep it out of her way.

Some clinics go right to the MicKey button or bard button. Ours didn't because the GI who put it in feels that the PEG helps build up the stomach muscle which helps to keep the MicKey in place later. He found that kids who went straight to the MicKey pulled their tubes out much more often that those that started with the long tube. That was all the reason I needed! By the way, Emily has NEVER pulled her tube out. I did, once, accidently. Talk about feeling HORRIBLE!!!! But, she slept through it.

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.

Of course you know already that I, for one, do not think you are being selfish. I felt, too, that it was going to be a big turnig point. I felt that the tube would some how change us, and the way others saw us. I had my selfish petty fears. (not saying that yours are...just that I realized after it was all said and done that I was afraid for MYSELF as much as for Emily). Now, I can look back and see that we are still just us. Emily is still Emily. We treat the tube like it's not a big deal, and it isn't. There is no way that you can know that it will all be ok until you live through it. THis is the biggest deal you have to go through, so far. But, it really will be ok.

Hmmm. I wish I could, just once, give a SHORT answer to one of your posts. SOrry!

izemmom · Sep 10, 2008

I didn't take the time to read all your previous responses, so forgive any repeats...

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

The hardest part of the recovery for us was coming off the anesthia. Emily never reacts well to it, so she was pretty groggy most of the next day. After that, she was up and running around. She pulled at the tube maybe once or twice, but other than that she didn't have any discomfort.

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

Hardly disgusting at all, as hard as that is to beleive. I accidently left the tube unclamped once while I was putting her jammies on her, and she grabbed the tube and started sucking on it like a straw. SHe ended up with a mouth full of stomach juice. Now, THAT was disgusting and I had to leave the room and throw up, but other than that, we've neer had issues.

If Emily has a cold or more than her baseline cough, she will sometimes throw up in the morning (from coughing) when her tummy is really full. Other than that, she doesn't throw up more than usual. (But, her usual is WAAAAAY more than most kids.)

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

Emily now knows (and tells others) that her tube is so she can get extra food while she sleeps, so her body will be strong and healthy. When she got it, we told Isabelle (then almost 5) that Emily needed some help getting all the food her body needed. We said that the doctors were going to put in a tube that we would hook up to a machine at night and that would help give Emily what she needed. I don't remember giving her more of an explanation. She didn't really think twice about it, and even now, if people ask about it (or stare, like some idiot at the pool this summer) Isabelle just says, "that's Emily's tube. It helps her stay healthy."

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?

Ummm. Yeah. The STUFF. This was the kicker for me. The first months' supplies were dropped off while we were still at the hospital. I came home to a stack of boxes filled with enough stuff to stock a small pharmacy. We converted one half of Em's closet to a storage area for ALL of her CF related stuff. The cases of formula do take up room, and the feeding bags. But the rest is not too bad. Let me know if you want to see a picture of her closet to get an idea. The pump it self is not bad. We have kids over ALL the time playing in her room, and I"m not sure anyone has ever asked about it. I don't even think about the stand and the pump being in there anymore. I'm so used to it it just blends in.

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?

This was my big fear, too. We never have to get up for tube stuff. Only if she is coughing a lot, or cries, or something. But, I sleep very well, thank you very much! I was SURE she'd get tangled and pull the thing out or wake herself up, but it has NEVER happened. I have watched her untangle herself in her sleep. I think the body just adjusts. Once in a while (very rarely) the machine will alarm in the middle of the night, if there's a kink in the line or something. But that's usually an easy fix.

Some people have mentioned that they have to get up to administer enzymes. I don't get that, becasue according to our docs, you shouldn't have to, depending on what you use. Talk to the docs about this and insist on something that will allow you to put the enzyme in with the formula. We currently use Viokase.

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.

Yep. Entirely possible to teach grandparents. And, in our case, aunts and uncles, grown up cousins, neighbors and friends. No one that I've asked has had a problem with it. I make it a point to teach lots of people, because if something ever happened to me or my husband, I'd want to be sure that someone could give Emily the care she needs.

7. How hard is traveling with all the equipment?

We've only done car trips so far. (First flight will be next June). The stuff takes up room, but other than that it's not hard.

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

Pricey. We have our standard co-pay for everything, but if we had to pay out of pocket, we'd be hurtin'. The formula and enzyme are not cheap. Our latest statement shows that the full cost of a month's formula is $225. Times 12 for a year... *sigh*

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.

I've said this a lot in other posts, but our daycare (now preschool...yikes, my baby is in preschool!) has been great. I suppose I will worry a bit more when she starts kindergarten, but I really don't think that having a tube should hurt her in that way. I'm curious how your son's pre-school stays open. It seems that most of the kids we know are on some type of medication! In Emily's class there is one other kid with a g-tube (it was just removed, actually), severe asthma, a thyroid problem (meds with every meal), a liver condition (daily meds)... I guess we are lucky???

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

Walk through the ENTIRE process with the docs, nurses, and someone who will care for her in the hospital after the procedure. Our single biggest problem (and my breaking point) was that after the tube went in NOONE who cared for us that night and next day could find the right adapter to connect the tube in Emily's tummy to the tube on the feeding set (bag). We had leaks all night long and I was angry. THey promised it wouldn't be like that. All night long I kept saying that they must be missing a part because any idiot could see that hte two parts didn't hook up right. It took until noon the next day to get anywhere. So, ask to see exactly what will happen. Ask to see the pump, the bags, the formula. Get a good idea of what to expect before she goes in.

Ask if she will get a PEG first. That's the long tube. Ours stayed in for about 6 - 8 weeks. It was not convienient, but it wasn't too bad, either. If she ends up with this, I've got some tricks to share that worked well for us to keep it out of her way.

Some clinics go right to the MicKey button or bard button. Ours didn't because the GI who put it in feels that the PEG helps build up the stomach muscle which helps to keep the MicKey in place later. He found that kids who went straight to the MicKey pulled their tubes out much more often that those that started with the long tube. That was all the reason I needed! By the way, Emily has NEVER pulled her tube out. I did, once, accidently. Talk about feeling HORRIBLE!!!! But, she slept through it.

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.

Of course you know already that I, for one, do not think you are being selfish. I felt, too, that it was going to be a big turnig point. I felt that the tube would some how change us, and the way others saw us. I had my selfish petty fears. (not saying that yours are...just that I realized after it was all said and done that I was afraid for MYSELF as much as for Emily). Now, I can look back and see that we are still just us. Emily is still Emily. We treat the tube like it's not a big deal, and it isn't. There is no way that you can know that it will all be ok until you live through it. THis is the biggest deal you have to go through, so far. But, it really will be ok.

Hmmm. I wish I could, just once, give a SHORT answer to one of your posts. SOrry!

izemmom · Sep 10, 2008

I didn't take the time to read all your previous responses, so forgive any repeats...
 
 
 
 1. How long and how painful is the recovery really?
 
 The hardest part of the recovery for us was coming off the anesthia. Emily never reacts well to it, so she was pretty groggy most of the next day. After that, she was up and running around. She pulled at the tube maybe once or twice, but other than that she didn't have any discomfort.
 
 2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
 
 Hardly disgusting at all, as hard as that is to beleive. I accidently left the tube unclamped once while I was putting her jammies on her, and she grabbed the tube and started sucking on it like a straw. SHe ended up with a mouth full of stomach juice. Now, THAT was disgusting and I had to leave the room and throw up, but other than that, we've neer had issues.
 
 If Emily has a cold or more than her baseline cough, she will sometimes throw up in the morning (from coughing) when her tummy is really full. Other than that, she doesn't throw up more than usual. (But, her usual is WAAAAAY more than most kids.)
 
 3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
 
 Emily now knows (and tells others) that her tube is so she can get extra food while she sleeps, so her body will be strong and healthy. When she got it, we told Isabelle (then almost 5) that Emily needed some help getting all the food her body needed. We said that the doctors were going to put in a tube that we would hook up to a machine at night and that would help give Emily what she needed. I don't remember giving her more of an explanation. She didn't really think twice about it, and even now, if people ask about it (or stare, like some idiot at the pool this summer) Isabelle just says, "that's Emily's tube. It helps her stay healthy."
 
 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?
 
 Ummm. Yeah. The STUFF. This was the kicker for me. The first months' supplies were dropped off while we were still at the hospital. I came home to a stack of boxes filled with enough stuff to stock a small pharmacy. We converted one half of Em's closet to a storage area for ALL of her CF related stuff. The cases of formula do take up room, and the feeding bags. But the rest is not too bad. Let me know if you want to see a picture of her closet to get an idea. The pump it self is not bad. We have kids over ALL the time playing in her room, and I"m not sure anyone has ever asked about it. I don't even think about the stand and the pump being in there anymore. I'm so used to it it just blends in.
 
 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?
 
 This was my big fear, too. We never have to get up for tube stuff. Only if she is coughing a lot, or cries, or something. But, I sleep very well, thank you very much! I was SURE she'd get tangled and pull the thing out or wake herself up, but it has NEVER happened. I have watched her untangle herself in her sleep. I think the body just adjusts. Once in a while (very rarely) the machine will alarm in the middle of the night, if there's a kink in the line or something. But that's usually an easy fix.
 
 Some people have mentioned that they have to get up to administer enzymes. I don't get that, becasue according to our docs, you shouldn't have to, depending on what you use. Talk to the docs about this and insist on something that will allow you to put the enzyme in with the formula. We currently use Viokase.
 
 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.
 
 Yep. Entirely possible to teach grandparents. And, in our case, aunts and uncles, grown up cousins, neighbors and friends. No one that I've asked has had a problem with it. I make it a point to teach lots of people, because if something ever happened to me or my husband, I'd want to be sure that someone could give Emily the care she needs.
 
 7. How hard is traveling with all the equipment?
 
 We've only done car trips so far. (First flight will be next June). The stuff takes up room, but other than that it's not hard.
 
 8. How expensive is everything? Does insurance usually cover it all?
 
 Pricey. We have our standard co-pay for everything, but if we had to pay out of pocket, we'd be hurtin'. The formula and enzyme are not cheap. Our latest statement shows that the full cost of a month's formula is $225. Times 12 for a year... *sigh*
 
 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.
 
 I've said this a lot in other posts, but our daycare (now preschool...yikes, my baby is in preschool!) has been great. I suppose I will worry a bit more when she starts kindergarten, but I really don't think that having a tube should hurt her in that way. I'm curious how your son's pre-school stays open. It seems that most of the kids we know are on some type of medication! In Emily's class there is one other kid with a g-tube (it was just removed, actually), severe asthma, a thyroid problem (meds with every meal), a liver condition (daily meds)... I guess we are lucky???
 
 10. Is there anything I'm not asking about that is important for me to know?
 
 Walk through the ENTIRE process with the docs, nurses, and someone who will care for her in the hospital after the procedure. Our single biggest problem (and my breaking point) was that after the tube went in NOONE who cared for us that night and next day could find the right adapter to connect the tube in Emily's tummy to the tube on the feeding set (bag). We had leaks all night long and I was angry. THey promised it wouldn't be like that. All night long I kept saying that they must be missing a part because any idiot could see that hte two parts didn't hook up right. It took until noon the next day to get anywhere. So, ask to see exactly what will happen. Ask to see the pump, the bags, the formula. Get a good idea of what to expect before she goes in.
 
 Ask if she will get a PEG first. That's the long tube. Ours stayed in for about 6 - 8 weeks. It was not convienient, but it wasn't too bad, either. If she ends up with this, I've got some tricks to share that worked well for us to keep it out of her way.
 
 Some clinics go right to the MicKey button or bard button. Ours didn't because the GI who put it in feels that the PEG helps build up the stomach muscle which helps to keep the MicKey in place later. He found that kids who went straight to the MicKey pulled their tubes out much more often that those that started with the long tube. That was all the reason I needed! By the way, Emily has NEVER pulled her tube out. I did, once, accidently. Talk about feeling HORRIBLE!!!! But, she slept through it.
 
 
 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.
 
 Of course you know already that I, for one, do not think you are being selfish. I felt, too, that it was going to be a big turnig point. I felt that the tube would some how change us, and the way others saw us. I had my selfish petty fears. (not saying that yours are...just that I realized after it was all said and done that I was afraid for MYSELF as much as for Emily). Now, I can look back and see that we are still just us. Emily is still Emily. We treat the tube like it's not a big deal, and it isn't. There is no way that you can know that it will all be ok until you live through it. THis is the biggest deal you have to go through, so far. But, it really will be ok.
 
 
 Hmmm. I wish I could, just once, give a SHORT answer to one of your posts. SOrry!

izemmom · Sep 10, 2008

So here I go, adding more! Cut me off!

Just HAD to add that we have the same Zevex infinity pump that Sharon mentioned. We love it too! See if you can request that one! Our home health nurse requested that one for us because it is her favorite.

izemmom · Sep 10, 2008

So here I go, adding more! Cut me off!

Just HAD to add that we have the same Zevex infinity pump that Sharon mentioned. We love it too! See if you can request that one! Our home health nurse requested that one for us because it is her favorite.

izemmom · Sep 10, 2008

So here I go, adding more! Cut me off!

Just HAD to add that we have the same Zevex infinity pump that Sharon mentioned. We love it too! See if you can request that one! Our home health nurse requested that one for us because it is her favorite.

izemmom · Sep 10, 2008

So here I go, adding more! Cut me off!

Just HAD to add that we have the same Zevex infinity pump that Sharon mentioned. We love it too! See if you can request that one! Our home health nurse requested that one for us because it is her favorite.

izemmom · Sep 10, 2008

So here I go, adding more! Cut me off!
 
 Just HAD to add that we have the same Zevex infinity pump that Sharon mentioned. We love it too! See if you can request that one! Our home health nurse requested that one for us because it is her favorite.

jimiv · Sep 10, 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?
My son Parker had a tube placed on 1/11/08 and he was back at school on Monday. He had his button placed about 2 months later which was done on an outpatient basis. He was a little uncomfortable after the first procedure. That feeling faded after a day or so.
2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
If you remember to keep the tubes closed when you change them then there is no problem. Parker and I have had a few spills but they are easy to correct after a while. On some evenings, Parker will tape his tube to his stomach so when he rolls in his sleep he doesn't accidentally unplug himself.
3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
Parker does not have a sibling (yet) but I talked with him about this and addressed it as a symptom of CF and necessary for his care. I let him talk with his doctor and see the postings I got from this site. I would imagine for the siblings, you could address this as a treatment method like other things you have tried. There is a book "Taking Cystic Fibrosis to School" which might be helpful to you.
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?
Parker's pump is about the size of a six pack of sodas. All his feeding supplies (tubes, formula, etc) are stored in a bathroom closet. His pump hangs from a hook I put in his bunk bed so the pump can be put away if friends come over. I have told Parker that what he tells his friends about this is his business. When he swims, I give him the option of wearing a shirt or putting on a large band aid. He usually chooses neither and just jumps in.
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?
For a while I used a baby monitor to listen for the pump when it beeps and such. Now most nights Parker will turn it off when it beeps and take his own tube out. With many pumps, you can adjust the rate of the pump to allow for a longer run or shorter. Parker's pump usually runs 3.5 hrs a night for a large feed.
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.
My parents and my sister both learned how without many problems. The funny part was one evening when Parker spent the night at his Aunt's (my sister) he ended up trouble shooting how to do a feeding session and there were no problems from there.
7. How hard is traveling with all the equipment?
I can fit all of Parker's stuff in a small backpack or a section of his suitcase. This summer, he took a train trip with his grandparents to Chicago for a week and it fit in his one bag along with his clothes. My parents had no problems with the feed (except when on the train).
8. How expensive is everything? Does insurance usually cover it all?
This was the hard part for me. Insurance paid for the pump and the hospital stays and the bags, tubes, etc. They would not pay for the formula that went in the tube (see previous postings on this site "BCBSLA Grrrr"). What I ended up doing was working with the clinic nutritionist to develop a feeding plan and work with different companies to get help with acquiring their products with their assistance program. I am would not qualify for most assistance programs because I am not at or below the income standards; but when I showed how I would be below the poverty line if I paid retail for the amount of formula that Parker's doctor was recommending, the Pharmacutical company approved me. I joke about it now because they remind me when I call for refills that I am one of the few people who has written a letter to their customer service about how much I appreciate what they do. PM me for more details if you like because I feel like I am rambling.

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.
I would think you should not have a problem. Would a school deny a child because they had a prosthetic arm or leg? Once the tube is placed and a button is put it, there is very little to look at. As far as meds go, is there a way for you or someone else to come to the school to give her what medicine she needs. I do not know what sort of school they are going to but it sounds like the school is dangerously close to discriminating based on a medical condition. 
10. Is there anything I'm not asking about that is important for me to know?
There are a million questions that come up but a lot of the answers came to me from just trying to figure out what worked best for Parker in our home. One piece of good news about all this. Parker went from below the first percentile BMI to about the 35th percentile in 4 months. GOOD LUCK!

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.

jimiv · Sep 10, 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?
My son Parker had a tube placed on 1/11/08 and he was back at school on Monday. He had his button placed about 2 months later which was done on an outpatient basis. He was a little uncomfortable after the first procedure. That feeling faded after a day or so.
2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
If you remember to keep the tubes closed when you change them then there is no problem. Parker and I have had a few spills but they are easy to correct after a while. On some evenings, Parker will tape his tube to his stomach so when he rolls in his sleep he doesn't accidentally unplug himself.
3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
Parker does not have a sibling (yet) but I talked with him about this and addressed it as a symptom of CF and necessary for his care. I let him talk with his doctor and see the postings I got from this site. I would imagine for the siblings, you could address this as a treatment method like other things you have tried. There is a book "Taking Cystic Fibrosis to School" which might be helpful to you.
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?
Parker's pump is about the size of a six pack of sodas. All his feeding supplies (tubes, formula, etc) are stored in a bathroom closet. His pump hangs from a hook I put in his bunk bed so the pump can be put away if friends come over. I have told Parker that what he tells his friends about this is his business. When he swims, I give him the option of wearing a shirt or putting on a large band aid. He usually chooses neither and just jumps in.
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?
For a while I used a baby monitor to listen for the pump when it beeps and such. Now most nights Parker will turn it off when it beeps and take his own tube out. With many pumps, you can adjust the rate of the pump to allow for a longer run or shorter. Parker's pump usually runs 3.5 hrs a night for a large feed.
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.
My parents and my sister both learned how without many problems. The funny part was one evening when Parker spent the night at his Aunt's (my sister) he ended up trouble shooting how to do a feeding session and there were no problems from there.
7. How hard is traveling with all the equipment?
I can fit all of Parker's stuff in a small backpack or a section of his suitcase. This summer, he took a train trip with his grandparents to Chicago for a week and it fit in his one bag along with his clothes. My parents had no problems with the feed (except when on the train).
8. How expensive is everything? Does insurance usually cover it all?
This was the hard part for me. Insurance paid for the pump and the hospital stays and the bags, tubes, etc. They would not pay for the formula that went in the tube (see previous postings on this site "BCBSLA Grrrr"). What I ended up doing was working with the clinic nutritionist to develop a feeding plan and work with different companies to get help with acquiring their products with their assistance program. I am would not qualify for most assistance programs because I am not at or below the income standards; but when I showed how I would be below the poverty line if I paid retail for the amount of formula that Parker's doctor was recommending, the Pharmacutical company approved me. I joke about it now because they remind me when I call for refills that I am one of the few people who has written a letter to their customer service about how much I appreciate what they do. PM me for more details if you like because I feel like I am rambling.

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.
I would think you should not have a problem. Would a school deny a child because they had a prosthetic arm or leg? Once the tube is placed and a button is put it, there is very little to look at. As far as meds go, is there a way for you or someone else to come to the school to give her what medicine she needs. I do not know what sort of school they are going to but it sounds like the school is dangerously close to discriminating based on a medical condition. 
10. Is there anything I'm not asking about that is important for me to know?
There are a million questions that come up but a lot of the answers came to me from just trying to figure out what worked best for Parker in our home. One piece of good news about all this. Parker went from below the first percentile BMI to about the 35th percentile in 4 months. GOOD LUCK!

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.

jimiv · Sep 10, 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?
My son Parker had a tube placed on 1/11/08 and he was back at school on Monday. He had his button placed about 2 months later which was done on an outpatient basis. He was a little uncomfortable after the first procedure. That feeling faded after a day or so.
2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
If you remember to keep the tubes closed when you change them then there is no problem. Parker and I have had a few spills but they are easy to correct after a while. On some evenings, Parker will tape his tube to his stomach so when he rolls in his sleep he doesn't accidentally unplug himself.
3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
Parker does not have a sibling (yet) but I talked with him about this and addressed it as a symptom of CF and necessary for his care. I let him talk with his doctor and see the postings I got from this site. I would imagine for the siblings, you could address this as a treatment method like other things you have tried. There is a book "Taking Cystic Fibrosis to School" which might be helpful to you.
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?
Parker's pump is about the size of a six pack of sodas. All his feeding supplies (tubes, formula, etc) are stored in a bathroom closet. His pump hangs from a hook I put in his bunk bed so the pump can be put away if friends come over. I have told Parker that what he tells his friends about this is his business. When he swims, I give him the option of wearing a shirt or putting on a large band aid. He usually chooses neither and just jumps in.
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?
For a while I used a baby monitor to listen for the pump when it beeps and such. Now most nights Parker will turn it off when it beeps and take his own tube out. With many pumps, you can adjust the rate of the pump to allow for a longer run or shorter. Parker's pump usually runs 3.5 hrs a night for a large feed.
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.
My parents and my sister both learned how without many problems. The funny part was one evening when Parker spent the night at his Aunt's (my sister) he ended up trouble shooting how to do a feeding session and there were no problems from there.
7. How hard is traveling with all the equipment?
I can fit all of Parker's stuff in a small backpack or a section of his suitcase. This summer, he took a train trip with his grandparents to Chicago for a week and it fit in his one bag along with his clothes. My parents had no problems with the feed (except when on the train).
8. How expensive is everything? Does insurance usually cover it all?
This was the hard part for me. Insurance paid for the pump and the hospital stays and the bags, tubes, etc. They would not pay for the formula that went in the tube (see previous postings on this site "BCBSLA Grrrr"). What I ended up doing was working with the clinic nutritionist to develop a feeding plan and work with different companies to get help with acquiring their products with their assistance program. I am would not qualify for most assistance programs because I am not at or below the income standards; but when I showed how I would be below the poverty line if I paid retail for the amount of formula that Parker's doctor was recommending, the Pharmacutical company approved me. I joke about it now because they remind me when I call for refills that I am one of the few people who has written a letter to their customer service about how much I appreciate what they do. PM me for more details if you like because I feel like I am rambling.

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.
I would think you should not have a problem. Would a school deny a child because they had a prosthetic arm or leg? Once the tube is placed and a button is put it, there is very little to look at. As far as meds go, is there a way for you or someone else to come to the school to give her what medicine she needs. I do not know what sort of school they are going to but it sounds like the school is dangerously close to discriminating based on a medical condition. 
10. Is there anything I'm not asking about that is important for me to know?
There are a million questions that come up but a lot of the answers came to me from just trying to figure out what worked best for Parker in our home. One piece of good news about all this. Parker went from below the first percentile BMI to about the 35th percentile in 4 months. GOOD LUCK!

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.

jimiv · Sep 10, 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?
My son Parker had a tube placed on 1/11/08 and he was back at school on Monday. He had his button placed about 2 months later which was done on an outpatient basis. He was a little uncomfortable after the first procedure. That feeling faded after a day or so.
2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
If you remember to keep the tubes closed when you change them then there is no problem. Parker and I have had a few spills but they are easy to correct after a while. On some evenings, Parker will tape his tube to his stomach so when he rolls in his sleep he doesn't accidentally unplug himself.
3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
Parker does not have a sibling (yet) but I talked with him about this and addressed it as a symptom of CF and necessary for his care. I let him talk with his doctor and see the postings I got from this site. I would imagine for the siblings, you could address this as a treatment method like other things you have tried. There is a book "Taking Cystic Fibrosis to School" which might be helpful to you.
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?
Parker's pump is about the size of a six pack of sodas. All his feeding supplies (tubes, formula, etc) are stored in a bathroom closet. His pump hangs from a hook I put in his bunk bed so the pump can be put away if friends come over. I have told Parker that what he tells his friends about this is his business. When he swims, I give him the option of wearing a shirt or putting on a large band aid. He usually chooses neither and just jumps in.
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?
For a while I used a baby monitor to listen for the pump when it beeps and such. Now most nights Parker will turn it off when it beeps and take his own tube out. With many pumps, you can adjust the rate of the pump to allow for a longer run or shorter. Parker's pump usually runs 3.5 hrs a night for a large feed.
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.
My parents and my sister both learned how without many problems. The funny part was one evening when Parker spent the night at his Aunt's (my sister) he ended up trouble shooting how to do a feeding session and there were no problems from there.
7. How hard is traveling with all the equipment?
I can fit all of Parker's stuff in a small backpack or a section of his suitcase. This summer, he took a train trip with his grandparents to Chicago for a week and it fit in his one bag along with his clothes. My parents had no problems with the feed (except when on the train).
8. How expensive is everything? Does insurance usually cover it all?
This was the hard part for me. Insurance paid for the pump and the hospital stays and the bags, tubes, etc. They would not pay for the formula that went in the tube (see previous postings on this site "BCBSLA Grrrr"). What I ended up doing was working with the clinic nutritionist to develop a feeding plan and work with different companies to get help with acquiring their products with their assistance program. I am would not qualify for most assistance programs because I am not at or below the income standards; but when I showed how I would be below the poverty line if I paid retail for the amount of formula that Parker's doctor was recommending, the Pharmacutical company approved me. I joke about it now because they remind me when I call for refills that I am one of the few people who has written a letter to their customer service about how much I appreciate what they do. PM me for more details if you like because I feel like I am rambling.

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.
I would think you should not have a problem. Would a school deny a child because they had a prosthetic arm or leg? Once the tube is placed and a button is put it, there is very little to look at. As far as meds go, is there a way for you or someone else to come to the school to give her what medicine she needs. I do not know what sort of school they are going to but it sounds like the school is dangerously close to discriminating based on a medical condition. 
10. Is there anything I'm not asking about that is important for me to know?
There are a million questions that come up but a lot of the answers came to me from just trying to figure out what worked best for Parker in our home. One piece of good news about all this. Parker went from below the first percentile BMI to about the 35th percentile in 4 months. GOOD LUCK!

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.

jimiv · Sep 10, 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?
 My son Parker had a tube placed on 1/11/08 and he was back at school on Monday. He had his button placed about 2 months later which was done on an outpatient basis. He was a little uncomfortable after the first procedure. That feeling faded after a day or so.
 2. How disgusting is it? Do the stomach juices leak out? Does the child throw up more?
 If you remember to keep the tubes closed when you change them then there is no problem. Parker and I have had a few spills but they are easy to correct after a while. On some evenings, Parker will tape his tube to his stomach so when he rolls in his sleep he doesn't accidentally unplug himself.
 3. How do I explain this to my daughter (2.5 and her brothers 7 & 5)?
 Parker does not have a sibling (yet) but I talked with him about this and addressed it as a symptom of CF and necessary for his care. I let him talk with his doctor and see the postings I got from this site. I would imagine for the siblings, you could address this as a treatment method like other things you have tried. There is a book "Taking Cystic Fibrosis to School" which might be helpful to you.
 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?
 Parker's pump is about the size of a six pack of sodas. All his feeding supplies (tubes, formula, etc) are stored in a bathroom closet. His pump hangs from a hook I put in his bunk bed so the pump can be put away if friends come over. I have told Parker that what he tells his friends about this is his business. When he swims, I give him the option of wearing a shirt or putting on a large band aid. He usually chooses neither and just jumps in.
 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?
 For a while I used a baby monitor to listen for the pump when it beeps and such. Now most nights Parker will turn it off when it beeps and take his own tube out. With many pumps, you can adjust the rate of the pump to allow for a longer run or shorter. Parker's pump usually runs 3.5 hrs a night for a large feed.
 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.
 My parents and my sister both learned how without many problems. The funny part was one evening when Parker spent the night at his Aunt's (my sister) he ended up trouble shooting how to do a feeding session and there were no problems from there.
 7. How hard is traveling with all the equipment?
 I can fit all of Parker's stuff in a small backpack or a section of his suitcase. This summer, he took a train trip with his grandparents to Chicago for a week and it fit in his one bag along with his clothes. My parents had no problems with the feed (except when on the train).
 8. How expensive is everything? Does insurance usually cover it all?
 This was the hard part for me. Insurance paid for the pump and the hospital stays and the bags, tubes, etc. They would not pay for the formula that went in the tube (see previous postings on this site "BCBSLA Grrrr"). What I ended up doing was working with the clinic nutritionist to develop a feeding plan and work with different companies to get help with acquiring their products with their assistance program. I am would not qualify for most assistance programs because I am not at or below the income standards; but when I showed how I would be below the poverty line if I paid retail for the amount of formula that Parker's doctor was recommending, the Pharmacutical company approved me. I joke about it now because they remind me when I call for refills that I am one of the few people who has written a letter to their customer service about how much I appreciate what they do. PM me for more details if you like because I feel like I am rambling.
 
 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.
 I would think you should not have a problem. Would a school deny a child because they had a prosthetic arm or leg? Once the tube is placed and a button is put it, there is very little to look at. As far as meds go, is there a way for you or someone else to come to the school to give her what medicine she needs. I do not know what sort of school they are going to but it sounds like the school is dangerously close to discriminating based on a medical condition. 
 10. Is there anything I'm not asking about that is important for me to know?
 There are a million questions that come up but a lot of the answers came to me from just trying to figure out what worked best for Parker in our home. One piece of good news about all this. Parker went from below the first percentile BMI to about the 35th percentile in 4 months. GOOD LUCK!
 
 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.

questions for those with G-tube fed kids

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