My 9 year old does 100ml/hour for 10 hours at night. I agree with Terry, maybe the pump needs to be recalibrated if it is dispensing too fast. We use the EnteriLite and we've had to send it in for service a few times because it was pumping weird amounts that had nothing to do with what we programmed it for. When the pumps work correctly it is a fairly accurate device, it should be pumping the correct ml/hour for the correct number of hours.
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Dylan was doing GREAT then BAM!!
- Thread starter holmfamily1992
- Start date
My 9 year old does 100ml/hour for 10 hours at night. I agree with Terry, maybe the pump needs to be recalibrated if it is dispensing too fast. We use the EnteriLite and we've had to send it in for service a few times because it was pumping weird amounts that had nothing to do with what we programmed it for. When the pumps work correctly it is a fairly accurate device, it should be pumping the correct ml/hour for the correct number of hours.
My 9 year old does 100ml/hour for 10 hours at night. I agree with Terry, maybe the pump needs to be recalibrated if it is dispensing too fast. We use the EnteriLite and we've had to send it in for service a few times because it was pumping weird amounts that had nothing to do with what we programmed it for. When the pumps work correctly it is a fairly accurate device, it should be pumping the correct ml/hour for the correct number of hours.
My 9 year old does 100ml/hour for 10 hours at night. I agree with Terry, maybe the pump needs to be recalibrated if it is dispensing too fast. We use the EnteriLite and we've had to send it in for service a few times because it was pumping weird amounts that had nothing to do with what we programmed it for. When the pumps work correctly it is a fairly accurate device, it should be pumping the correct ml/hour for the correct number of hours.
My 9 year old does 100ml/hour for 10 hours at night. I agree with Terry, maybe the pump needs to be recalibrated if it is dispensing too fast. We use the EnteriLite and we've had to send it in for service a few times because it was pumping weird amounts that had nothing to do with what we programmed it for. When the pumps work correctly it is a fairly accurate device, it should be pumping the correct ml/hour for the correct number of hours.
BabyBeauty
New member
Avery has a G-tube and is on a drip at night, but she is only 9 months. So I don't think the amount she drips at night would help any...BUT...we have the Joey pump and measure the formula in a bottle first, dump it in, and program the amount we need to end in 10 hours. Every morning we wake up at 4-4:30 am because the darn thing has pumped too fast! I have adjusted the programmed amount and sometimes that works, but not all the time. I hate it! I thought I was doing something wrong. I am going to call tomorrow.
BabyBeauty
New member
Avery has a G-tube and is on a drip at night, but she is only 9 months. So I don't think the amount she drips at night would help any...BUT...we have the Joey pump and measure the formula in a bottle first, dump it in, and program the amount we need to end in 10 hours. Every morning we wake up at 4-4:30 am because the darn thing has pumped too fast! I have adjusted the programmed amount and sometimes that works, but not all the time. I hate it! I thought I was doing something wrong. I am going to call tomorrow.
BabyBeauty
New member
Avery has a G-tube and is on a drip at night, but she is only 9 months. So I don't think the amount she drips at night would help any...BUT...we have the Joey pump and measure the formula in a bottle first, dump it in, and program the amount we need to end in 10 hours. Every morning we wake up at 4-4:30 am because the darn thing has pumped too fast! I have adjusted the programmed amount and sometimes that works, but not all the time. I hate it! I thought I was doing something wrong. I am going to call tomorrow.
BabyBeauty
New member
Avery has a G-tube and is on a drip at night, but she is only 9 months. So I don't think the amount she drips at night would help any...BUT...we have the Joey pump and measure the formula in a bottle first, dump it in, and program the amount we need to end in 10 hours. Every morning we wake up at 4-4:30 am because the darn thing has pumped too fast! I have adjusted the programmed amount and sometimes that works, but not all the time. I hate it! I thought I was doing something wrong. I am going to call tomorrow.
BabyBeauty
New member
Avery has a G-tube and is on a drip at night, but she is only 9 months. So I don't think the amount she drips at night would help any...BUT...we have the Joey pump and measure the formula in a bottle first, dump it in, and program the amount we need to end in 10 hours. Every morning we wake up at 4-4:30 am because the darn thing has pumped too fast! I have adjusted the programmed amount and sometimes that works, but not all the time. I hate it! I thought I was doing something wrong. I am going to call tomorrow.
Oh poor kid! That sounded awful. I hope the keflex does the trick.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
Oh poor kid! That sounded awful. I hope the keflex does the trick.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
Oh poor kid! That sounded awful. I hope the keflex does the trick.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
Oh poor kid! That sounded awful. I hope the keflex does the trick.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
Oh poor kid! That sounded awful. I hope the keflex does the trick.
<br />
<br />My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
<br />
<br />My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
<br />
<br />It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
<br />
<br />
<br />
<br />My older son gets 4 cans of osmolite over about 7 hours. He jacks the pump up to 185, but he tolerated it fine. He has it timed to go off about the time he gets up for school, but sometimes it goes off early. The alarm will beep forever and he doesn't hear it (but I do- grrr)
<br />
<br />My younger son gets 3 cans over 7 hours and runs the pump slower at 125 I think.
<br />
<br />It takes a while to figure out a good rate for them, but you shouldn't have to decrease his quantity.
<br />
<br />
holmfamily1992
New member
Wow!! Most of the children are doing much more then Dylan is doing. I thought 750 ml was bad. The health care company I spoke to today said that they have had a problem with the Kangaroo Joey pumps dispensing to fast. Why do they even start with them then??? We will mess around with this pump a few times but thats it. If I cant get the stupid thing to slow down they WILL send me a different one!!!
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
holmfamily1992
New member
Wow!! Most of the children are doing much more then Dylan is doing. I thought 750 ml was bad. The health care company I spoke to today said that they have had a problem with the Kangaroo Joey pumps dispensing to fast. Why do they even start with them then??? We will mess around with this pump a few times but thats it. If I cant get the stupid thing to slow down they WILL send me a different one!!!
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
holmfamily1992
New member
Wow!! Most of the children are doing much more then Dylan is doing. I thought 750 ml was bad. The health care company I spoke to today said that they have had a problem with the Kangaroo Joey pumps dispensing to fast. Why do they even start with them then??? We will mess around with this pump a few times but thats it. If I cant get the stupid thing to slow down they WILL send me a different one!!!
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
holmfamily1992
New member
Wow!! Most of the children are doing much more then Dylan is doing. I thought 750 ml was bad. The health care company I spoke to today said that they have had a problem with the Kangaroo Joey pumps dispensing to fast. Why do they even start with them then??? We will mess around with this pump a few times but thats it. If I cant get the stupid thing to slow down they WILL send me a different one!!!
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
Thanks you guys,
Tina
holmfamily1992
New member
Wow!! Most of the children are doing much more then Dylan is doing. I thought 750 ml was bad. The health care company I spoke to today said that they have had a problem with the Kangaroo Joey pumps dispensing to fast. Why do they even start with them then??? We will mess around with this pump a few times but thats it. If I cant get the stupid thing to slow down they WILL send me a different one!!!
<br />
<br />I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
<br />
<br />Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
<br />
<br />Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
<br />
<br />Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
<br />
<br />OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
<br />
<br />Thanks you guys,
<br />Tina
<br />
<br />
<br />
<br />I am getting to the point with Doctors that I just dont care what they think anymore. This is our son, he has been with us for 10 years and we know him best. I dont care if they think I am the biggest B**ch!! Arent they suppose to be the professionals???? Our CF clinic told me that we are are childrens only advocate and that is so true. I wish they could step in our shoes for one day.
<br />
<br />Heather, I did see the surgery was canceled. I was so sorry to read that. I was so affaid that would happen with Dylan and know I wish it had. Thats not fair to say because I know he needs it and not all G-tube surgery's end up like this did. If they docs would have listen to me from the beginning it would never have gone this far. (((Hugs))) to you too.
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<br />Right now we seem to be getting up lots at night too. Dylan definately doesnt quite know how to work the machine yet so its us that is up with him to get it to stop that aweful beeping!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">I dont mind, I would do anything for all of our children. When he was home from school on Friday I had him hooked up to Pedialite. I figured why not. He was just messing around on the computer and it was just him home but he didnt want it in. Im not sure whats going on with him because he doesnt mind it at night but when I suggest doing some during the day he throws a fit. I dont force it at all. Its not like we have to give it to him during the day. I just thought since he needed a little extra to help fight the infection that we could get it in then. Boy was I wrong!!
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<br />Dylan wakes up in the morning and it looks like his belly is eating the tube. It is so swollen that there is an indent where the tube sits. After about 4 hours the swelling seems to go down.
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<br />OH>>> is there any suggestions on what to put around his tube to help heal where the stomach acid has burned his skin??? The doctor told me Desiten or some kind of diaper rash ointment. I just want to make sure that we are not using something that is going to clog the hole where the infection is coming out. Better out then in.....
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<br />Thanks you guys,
<br />Tina
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