I just don't know what to do *ETA*

[babyluke]

I just don't know what to do

OUR SON HAS HAD HIS G-TUBE FOR ABOUT 10 MONTHS. WE ALSO OPTED TO DO THE FUNDIPLICATION (SP?) BECAUSE HIS REFLUX WAS SOOO BAD BEFORE THE TUBE AND WE FIGURED JUST DO BOTH THINGS AT ONCE AND MAYBE IT WOULD BE EASIER ON HIM. HE GAGGED A LOT IN THE BEGINNING, BUT OF COURSE DID NOT THROW UP BECAUSE OF THE FUND., BUT I KNOW HE WAS MISERABLE AND IT WAS AWFUL. HE IS EIGHTEEN MONTHS OLD NOW AND HE HAS GAINED WEIGHT, BUT STILL NOT ENOUGH. HE WAS 12lBS. WHEN WE DID THE SURGERY AND NOW HE IS ABOUT 21. STILL NOT ON THE GROWTH CURVE.I AM NOT SURE THAT I WOULD GO THROUGH IT AGAIN. BUT SINCE WE HAVE IT, WE JUST KEEP GOING. WE DID PLAY WITH HIS RATE IN THE BEGINNING AND THAT SEEMED TO HELP ALOT. THEY KEEP WANTING US TO GO UP, BUT HE DOES NOT TOLERATE IT. HE ALSO SLEPT ON A WEDGE IN THE BEGINNING AND THAT SEEMED TO HELP.THE ONLY BENEFIT THAT I CAN DEFINETELY SAY IS THAT WHEN HE IS SICK AND DOESN'T WANT TO EAT AT ALL, WE CAN USE THE TUBE AND HE HAS NOT LOST ANY WEIGHT DURING FLARE UPS AS HE USED TO. HOPE THAT HELPS. ANGELA

 

[babyluke]

I just don't know what to do

OUR SON HAS HAD HIS G-TUBE FOR ABOUT 10 MONTHS. WE ALSO OPTED TO DO THE FUNDIPLICATION (SP?) BECAUSE HIS REFLUX WAS SOOO BAD BEFORE THE TUBE AND WE FIGURED JUST DO BOTH THINGS AT ONCE AND MAYBE IT WOULD BE EASIER ON HIM. HE GAGGED A LOT IN THE BEGINNING, BUT OF COURSE DID NOT THROW UP BECAUSE OF THE FUND., BUT I KNOW HE WAS MISERABLE AND IT WAS AWFUL. HE IS EIGHTEEN MONTHS OLD NOW AND HE HAS GAINED WEIGHT, BUT STILL NOT ENOUGH. HE WAS 12lBS. WHEN WE DID THE SURGERY AND NOW HE IS ABOUT 21. STILL NOT ON THE GROWTH CURVE.I AM NOT SURE THAT I WOULD GO THROUGH IT AGAIN. BUT SINCE WE HAVE IT, WE JUST KEEP GOING. WE DID PLAY WITH HIS RATE IN THE BEGINNING AND THAT SEEMED TO HELP ALOT. THEY KEEP WANTING US TO GO UP, BUT HE DOES NOT TOLERATE IT. HE ALSO SLEPT ON A WEDGE IN THE BEGINNING AND THAT SEEMED TO HELP.THE ONLY BENEFIT THAT I CAN DEFINETELY SAY IS THAT WHEN HE IS SICK AND DOESN'T WANT TO EAT AT ALL, WE CAN USE THE TUBE AND HE HAS NOT LOST ANY WEIGHT DURING FLARE UPS AS HE USED TO. HOPE THAT HELPS. ANGELA

 

[babyluke]

I just don't know what to do

OUR SON HAS HAD HIS G-TUBE FOR ABOUT 10 MONTHS. WE ALSO OPTED TO DO THE FUNDIPLICATION (SP?) BECAUSE HIS REFLUX WAS SOOO BAD BEFORE THE TUBE AND WE FIGURED JUST DO BOTH THINGS AT ONCE AND MAYBE IT WOULD BE EASIER ON HIM. HE GAGGED A LOT IN THE BEGINNING, BUT OF COURSE DID NOT THROW UP BECAUSE OF THE FUND., BUT I KNOW HE WAS MISERABLE AND IT WAS AWFUL. HE IS EIGHTEEN MONTHS OLD NOW AND HE HAS GAINED WEIGHT, BUT STILL NOT ENOUGH. HE WAS 12lBS. WHEN WE DID THE SURGERY AND NOW HE IS ABOUT 21. STILL NOT ON THE GROWTH CURVE.I AM NOT SURE THAT I WOULD GO THROUGH IT AGAIN. BUT SINCE WE HAVE IT, WE JUST KEEP GOING. WE DID PLAY WITH HIS RATE IN THE BEGINNING AND THAT SEEMED TO HELP ALOT. THEY KEEP WANTING US TO GO UP, BUT HE DOES NOT TOLERATE IT. HE ALSO SLEPT ON A WEDGE IN THE BEGINNING AND THAT SEEMED TO HELP.THE ONLY BENEFIT THAT I CAN DEFINETELY SAY IS THAT WHEN HE IS SICK AND DOESN'T WANT TO EAT AT ALL, WE CAN USE THE TUBE AND HE HAS NOT LOST ANY WEIGHT DURING FLARE UPS AS HE USED TO. HOPE THAT HELPS. ANGELA

 

[babyluke]

I just don't know what to do

OUR SON HAS HAD HIS G-TUBE FOR ABOUT 10 MONTHS. WE ALSO OPTED TO DO THE FUNDIPLICATION (SP?) BECAUSE HIS REFLUX WAS SOOO BAD BEFORE THE TUBE AND WE FIGURED JUST DO BOTH THINGS AT ONCE AND MAYBE IT WOULD BE EASIER ON HIM. HE GAGGED A LOT IN THE BEGINNING, BUT OF COURSE DID NOT THROW UP BECAUSE OF THE FUND., BUT I KNOW HE WAS MISERABLE AND IT WAS AWFUL. HE IS EIGHTEEN MONTHS OLD NOW AND HE HAS GAINED WEIGHT, BUT STILL NOT ENOUGH. HE WAS 12lBS. WHEN WE DID THE SURGERY AND NOW HE IS ABOUT 21. STILL NOT ON THE GROWTH CURVE.I AM NOT SURE THAT I WOULD GO THROUGH IT AGAIN. BUT SINCE WE HAVE IT, WE JUST KEEP GOING. WE DID PLAY WITH HIS RATE IN THE BEGINNING AND THAT SEEMED TO HELP ALOT. THEY KEEP WANTING US TO GO UP, BUT HE DOES NOT TOLERATE IT. HE ALSO SLEPT ON A WEDGE IN THE BEGINNING AND THAT SEEMED TO HELP.THE ONLY BENEFIT THAT I CAN DEFINETELY SAY IS THAT WHEN HE IS SICK AND DOESN'T WANT TO EAT AT ALL, WE CAN USE THE TUBE AND HE HAS NOT LOST ANY WEIGHT DURING FLARE UPS AS HE USED TO. HOPE THAT HELPS. ANGELA

 

[babyluke]

I just don't know what to do

OUR SON HAS HAD HIS G-TUBE FOR ABOUT 10 MONTHS. WE ALSO OPTED TO DO THE FUNDIPLICATION (SP?) BECAUSE HIS REFLUX WAS SOOO BAD BEFORE THE TUBE AND WE FIGURED JUST DO BOTH THINGS AT ONCE AND MAYBE IT WOULD BE EASIER ON HIM. HE GAGGED A LOT IN THE BEGINNING, BUT OF COURSE DID NOT THROW UP BECAUSE OF THE FUND., BUT I KNOW HE WAS MISERABLE AND IT WAS AWFUL. HE IS EIGHTEEN MONTHS OLD NOW AND HE HAS GAINED WEIGHT, BUT STILL NOT ENOUGH. HE WAS 12lBS. WHEN WE DID THE SURGERY AND NOW HE IS ABOUT 21. STILL NOT ON THE GROWTH CURVE.I AM NOT SURE THAT I WOULD GO THROUGH IT AGAIN. BUT SINCE WE HAVE IT, WE JUST KEEP GOING. WE DID PLAY WITH HIS RATE IN THE BEGINNING AND THAT SEEMED TO HELP ALOT. THEY KEEP WANTING US TO GO UP, BUT HE DOES NOT TOLERATE IT. HE ALSO SLEPT ON A WEDGE IN THE BEGINNING AND THAT SEEMED TO HELP.THE ONLY BENEFIT THAT I CAN DEFINETELY SAY IS THAT WHEN HE IS SICK AND DOESN'T WANT TO EAT AT ALL, WE CAN USE THE TUBE AND HE HAS NOT LOST ANY WEIGHT DURING FLARE UPS AS HE USED TO. HOPE THAT HELPS. ANGELA

 

[westonsmom]

I just don't know what to do

Heather,

I'm SO sorry! I can't offer any advice because I've never had these specific issues...well some we did but it was all so long ago and I don't know if anything helpful was done. I am just sending you a huge hug. I can't imagine how frustrated you must be. My husband wants to just leave Weston's tube out one day because he hasn't used it in over two years. I wasn't sure if you could actually do that. Best wishes. My thoughts are with you guys!

 

[westonsmom]

I just don't know what to do

Heather,

I'm SO sorry! I can't offer any advice because I've never had these specific issues...well some we did but it was all so long ago and I don't know if anything helpful was done. I am just sending you a huge hug. I can't imagine how frustrated you must be. My husband wants to just leave Weston's tube out one day because he hasn't used it in over two years. I wasn't sure if you could actually do that. Best wishes. My thoughts are with you guys!

 

[westonsmom]

I just don't know what to do

Heather,

I'm SO sorry! I can't offer any advice because I've never had these specific issues...well some we did but it was all so long ago and I don't know if anything helpful was done. I am just sending you a huge hug. I can't imagine how frustrated you must be. My husband wants to just leave Weston's tube out one day because he hasn't used it in over two years. I wasn't sure if you could actually do that. Best wishes. My thoughts are with you guys!

 

[westonsmom]

I just don't know what to do

Heather,

I'm SO sorry! I can't offer any advice because I've never had these specific issues...well some we did but it was all so long ago and I don't know if anything helpful was done. I am just sending you a huge hug. I can't imagine how frustrated you must be. My husband wants to just leave Weston's tube out one day because he hasn't used it in over two years. I wasn't sure if you could actually do that. Best wishes. My thoughts are with you guys!

 

[westonsmom]

I just don't know what to do

Heather,
<br />
<br />I'm SO sorry! I can't offer any advice because I've never had these specific issues...well some we did but it was all so long ago and I don't know if anything helpful was done. I am just sending you a huge hug. I can't imagine how frustrated you must be. My husband wants to just leave Weston's tube out one day because he hasn't used it in over two years. I wasn't sure if you could actually do that. Best wishes. My thoughts are with you guys!

 

[Lety]

I just don't know what to do

I'm so sorry you are feeling this way. I know how stressful having a child with cf can be. My thoughts are with you.

 

[Lety]

I just don't know what to do

I'm so sorry you are feeling this way. I know how stressful having a child with cf can be. My thoughts are with you.

 

[Lety]

I just don't know what to do

I'm so sorry you are feeling this way. I know how stressful having a child with cf can be. My thoughts are with you.

 

[Lety]

I just don't know what to do

I'm so sorry you are feeling this way. I know how stressful having a child with cf can be. My thoughts are with you.

 

[Lety]

I just don't know what to do

I'm so sorry you are feeling this way. I know how stressful having a child with cf can be. My thoughts are with you.

 

[Cherylwithone]

I just don't know what to do

Can you get it changed to a J G instead. It by passes the stomach so you don't get the reflux. My daughter had one for awhile but because her system is SO HYPER sensitive her body attacked it. Other wise her weight was better and so was her reflux. Now she is back to a button and a high dose of Prevacid. Find out what your options are. My daughter has been in the hospital since the 10th due to an infection which = a big weight loss. It is very hard when your child is sick and gagging. Is the button the right size??? You can slo vent these to let air out. Ask them at clinic how to do it. Please hang in there and don't beat yourself up.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

I just don't know what to do

Can you get it changed to a J G instead. It by passes the stomach so you don't get the reflux. My daughter had one for awhile but because her system is SO HYPER sensitive her body attacked it. Other wise her weight was better and so was her reflux. Now she is back to a button and a high dose of Prevacid. Find out what your options are. My daughter has been in the hospital since the 10th due to an infection which = a big weight loss. It is very hard when your child is sick and gagging. Is the button the right size??? You can slo vent these to let air out. Ask them at clinic how to do it. Please hang in there and don't beat yourself up.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

I just don't know what to do

Can you get it changed to a J G instead. It by passes the stomach so you don't get the reflux. My daughter had one for awhile but because her system is SO HYPER sensitive her body attacked it. Other wise her weight was better and so was her reflux. Now she is back to a button and a high dose of Prevacid. Find out what your options are. My daughter has been in the hospital since the 10th due to an infection which = a big weight loss. It is very hard when your child is sick and gagging. Is the button the right size??? You can slo vent these to let air out. Ask them at clinic how to do it. Please hang in there and don't beat yourself up.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

I just don't know what to do

Can you get it changed to a J G instead. It by passes the stomach so you don't get the reflux. My daughter had one for awhile but because her system is SO HYPER sensitive her body attacked it. Other wise her weight was better and so was her reflux. Now she is back to a button and a high dose of Prevacid. Find out what your options are. My daughter has been in the hospital since the 10th due to an infection which = a big weight loss. It is very hard when your child is sick and gagging. Is the button the right size??? You can slo vent these to let air out. Ask them at clinic how to do it. Please hang in there and don't beat yourself up.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

I just don't know what to do

Can you get it changed to a J G instead. It by passes the stomach so you don't get the reflux. My daughter had one for awhile but because her system is SO HYPER sensitive her body attacked it. Other wise her weight was better and so was her reflux. Now she is back to a button and a high dose of Prevacid. Find out what your options are. My daughter has been in the hospital since the 10th due to an infection which = a big weight loss. It is very hard when your child is sick and gagging. Is the button the right size??? You can slo vent these to let air out. Ask them at clinic how to do it. Please hang in there and don't beat yourself up.
<br />
<br />Cheryl mom to Malora 15 w/cf