Please pray

T

theLostMiler

New member
I know for a lot of parents the g-tube has been so much better than they could have anticipated... and from my view, sometimes seems like the daily struggle of trying to eat enough and the stress of what the doctors will say or suggest gets to be so much.... then I feel like they wish they would have gotten the g-tube sooner.

What made me feel the best about it, is that we have to consider it a tool to fight CF. I got mine to help ease the stress of making sure I was getting enough calories during the day, essentially get rid of one stress in my life.

Honestly, I had a terrible time with mine at first, wanted to rip it out, cried in frustration and in confusion and in pain. I had a horrible GI office though and that was the most difficult part.

The thing is, they usually want to put in the actual g-tube initiallly for the first 6-8 weeks to allow the stomach wall and abodomin muscles to heal together. The tube was huge, ugly, in the way... I developed granulation tissue and didnt know what it was for a long time and so though it doesnt always hurt, it looks gross and causes tons of mucus to ooze out of the opening. You have to clean the site from 2-6 times a day. I got the granulation tissue cauterized off and then finally got to 8 weeks and got the g-tube switched with the PEG low profile button... now this I LOVE, it doesnt hurt, isnt in the way, isnt gross, is barely noticebable. My site is healing and everything seems like it is now worth it.

After being on here, I saw some people got to go straight to the button (either mickey or peg) and I suggest you enforce that rather than the 6-8 weeks of the huge tube.. if you end up getting one. So many people have benefited from a feeding tube, there are still the few that it doesnt help but I see that as being the more rare.

Another heads up is insurance doesnt like to pay for the feeding tube formulas, if/when you decide on getting the g-tube have your doctors start on that approaval ASAP... I am still fighting with mine. I used scandishakes for a month and actually lost weight... I just bought a case of the correct formula to try to see if it works better and Ive been on that for a week, so far it is way better than the scandishakes, Im not nauseous in the morning and dont feel as full.

PS: I also wondered about going to the bathroom in the middle of the night... its a pain but you just unplug the pump (Im on a pole but you can get portable ones) and roll it into the bathroom.

You dont have to stay awake if you are doing night feedings. You flush the tube with water and hook it up and go to sleep. It beeps when its done and you flush and unhook and keep sleeping if yourre me <img src="i/expressions/face-icon-small-smile.gif" border="0">

You can do bolus feeds during the day too. There are a few options.

I know this is long and Im not the best example because I hated mine at first, but it did get better with the button and the right formula.

I also found in my 'research' that younger kids seem to have the highest success rates and seem to really flourish and gain weight fast... remember she can fight the bugs even better with more weight (I always feel my best when at my highest weight).

Good luck, I am praying and wishing you a good clinic visit. If you want more info, PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
I know for a lot of parents the g-tube has been so much better than they could have anticipated... and from my view, sometimes seems like the daily struggle of trying to eat enough and the stress of what the doctors will say or suggest gets to be so much.... then I feel like they wish they would have gotten the g-tube sooner.

What made me feel the best about it, is that we have to consider it a tool to fight CF. I got mine to help ease the stress of making sure I was getting enough calories during the day, essentially get rid of one stress in my life.

Honestly, I had a terrible time with mine at first, wanted to rip it out, cried in frustration and in confusion and in pain. I had a horrible GI office though and that was the most difficult part.

The thing is, they usually want to put in the actual g-tube initiallly for the first 6-8 weeks to allow the stomach wall and abodomin muscles to heal together. The tube was huge, ugly, in the way... I developed granulation tissue and didnt know what it was for a long time and so though it doesnt always hurt, it looks gross and causes tons of mucus to ooze out of the opening. You have to clean the site from 2-6 times a day. I got the granulation tissue cauterized off and then finally got to 8 weeks and got the g-tube switched with the PEG low profile button... now this I LOVE, it doesnt hurt, isnt in the way, isnt gross, is barely noticebable. My site is healing and everything seems like it is now worth it.

After being on here, I saw some people got to go straight to the button (either mickey or peg) and I suggest you enforce that rather than the 6-8 weeks of the huge tube.. if you end up getting one. So many people have benefited from a feeding tube, there are still the few that it doesnt help but I see that as being the more rare.

Another heads up is insurance doesnt like to pay for the feeding tube formulas, if/when you decide on getting the g-tube have your doctors start on that approaval ASAP... I am still fighting with mine. I used scandishakes for a month and actually lost weight... I just bought a case of the correct formula to try to see if it works better and Ive been on that for a week, so far it is way better than the scandishakes, Im not nauseous in the morning and dont feel as full.

PS: I also wondered about going to the bathroom in the middle of the night... its a pain but you just unplug the pump (Im on a pole but you can get portable ones) and roll it into the bathroom.

You dont have to stay awake if you are doing night feedings. You flush the tube with water and hook it up and go to sleep. It beeps when its done and you flush and unhook and keep sleeping if yourre me <img src="i/expressions/face-icon-small-smile.gif" border="0">

You can do bolus feeds during the day too. There are a few options.

I know this is long and Im not the best example because I hated mine at first, but it did get better with the button and the right formula.

I also found in my 'research' that younger kids seem to have the highest success rates and seem to really flourish and gain weight fast... remember she can fight the bugs even better with more weight (I always feel my best when at my highest weight).

Good luck, I am praying and wishing you a good clinic visit. If you want more info, PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
I know for a lot of parents the g-tube has been so much better than they could have anticipated... and from my view, sometimes seems like the daily struggle of trying to eat enough and the stress of what the doctors will say or suggest gets to be so much.... then I feel like they wish they would have gotten the g-tube sooner.

What made me feel the best about it, is that we have to consider it a tool to fight CF. I got mine to help ease the stress of making sure I was getting enough calories during the day, essentially get rid of one stress in my life.

Honestly, I had a terrible time with mine at first, wanted to rip it out, cried in frustration and in confusion and in pain. I had a horrible GI office though and that was the most difficult part.

The thing is, they usually want to put in the actual g-tube initiallly for the first 6-8 weeks to allow the stomach wall and abodomin muscles to heal together. The tube was huge, ugly, in the way... I developed granulation tissue and didnt know what it was for a long time and so though it doesnt always hurt, it looks gross and causes tons of mucus to ooze out of the opening. You have to clean the site from 2-6 times a day. I got the granulation tissue cauterized off and then finally got to 8 weeks and got the g-tube switched with the PEG low profile button... now this I LOVE, it doesnt hurt, isnt in the way, isnt gross, is barely noticebable. My site is healing and everything seems like it is now worth it.

After being on here, I saw some people got to go straight to the button (either mickey or peg) and I suggest you enforce that rather than the 6-8 weeks of the huge tube.. if you end up getting one. So many people have benefited from a feeding tube, there are still the few that it doesnt help but I see that as being the more rare.

Another heads up is insurance doesnt like to pay for the feeding tube formulas, if/when you decide on getting the g-tube have your doctors start on that approaval ASAP... I am still fighting with mine. I used scandishakes for a month and actually lost weight... I just bought a case of the correct formula to try to see if it works better and Ive been on that for a week, so far it is way better than the scandishakes, Im not nauseous in the morning and dont feel as full.

PS: I also wondered about going to the bathroom in the middle of the night... its a pain but you just unplug the pump (Im on a pole but you can get portable ones) and roll it into the bathroom.

You dont have to stay awake if you are doing night feedings. You flush the tube with water and hook it up and go to sleep. It beeps when its done and you flush and unhook and keep sleeping if yourre me <img src="i/expressions/face-icon-small-smile.gif" border="0">

You can do bolus feeds during the day too. There are a few options.

I know this is long and Im not the best example because I hated mine at first, but it did get better with the button and the right formula.

I also found in my 'research' that younger kids seem to have the highest success rates and seem to really flourish and gain weight fast... remember she can fight the bugs even better with more weight (I always feel my best when at my highest weight).

Good luck, I am praying and wishing you a good clinic visit. If you want more info, PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
I know for a lot of parents the g-tube has been so much better than they could have anticipated... and from my view, sometimes seems like the daily struggle of trying to eat enough and the stress of what the doctors will say or suggest gets to be so much.... then I feel like they wish they would have gotten the g-tube sooner.

What made me feel the best about it, is that we have to consider it a tool to fight CF. I got mine to help ease the stress of making sure I was getting enough calories during the day, essentially get rid of one stress in my life.

Honestly, I had a terrible time with mine at first, wanted to rip it out, cried in frustration and in confusion and in pain. I had a horrible GI office though and that was the most difficult part.

The thing is, they usually want to put in the actual g-tube initiallly for the first 6-8 weeks to allow the stomach wall and abodomin muscles to heal together. The tube was huge, ugly, in the way... I developed granulation tissue and didnt know what it was for a long time and so though it doesnt always hurt, it looks gross and causes tons of mucus to ooze out of the opening. You have to clean the site from 2-6 times a day. I got the granulation tissue cauterized off and then finally got to 8 weeks and got the g-tube switched with the PEG low profile button... now this I LOVE, it doesnt hurt, isnt in the way, isnt gross, is barely noticebable. My site is healing and everything seems like it is now worth it.

After being on here, I saw some people got to go straight to the button (either mickey or peg) and I suggest you enforce that rather than the 6-8 weeks of the huge tube.. if you end up getting one. So many people have benefited from a feeding tube, there are still the few that it doesnt help but I see that as being the more rare.

Another heads up is insurance doesnt like to pay for the feeding tube formulas, if/when you decide on getting the g-tube have your doctors start on that approaval ASAP... I am still fighting with mine. I used scandishakes for a month and actually lost weight... I just bought a case of the correct formula to try to see if it works better and Ive been on that for a week, so far it is way better than the scandishakes, Im not nauseous in the morning and dont feel as full.

PS: I also wondered about going to the bathroom in the middle of the night... its a pain but you just unplug the pump (Im on a pole but you can get portable ones) and roll it into the bathroom.

You dont have to stay awake if you are doing night feedings. You flush the tube with water and hook it up and go to sleep. It beeps when its done and you flush and unhook and keep sleeping if yourre me <img src="i/expressions/face-icon-small-smile.gif" border="0">

You can do bolus feeds during the day too. There are a few options.

I know this is long and Im not the best example because I hated mine at first, but it did get better with the button and the right formula.

I also found in my 'research' that younger kids seem to have the highest success rates and seem to really flourish and gain weight fast... remember she can fight the bugs even better with more weight (I always feel my best when at my highest weight).

Good luck, I am praying and wishing you a good clinic visit. If you want more info, PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
I know for a lot of parents the g-tube has been so much better than they could have anticipated... and from my view, sometimes seems like the daily struggle of trying to eat enough and the stress of what the doctors will say or suggest gets to be so much.... then I feel like they wish they would have gotten the g-tube sooner.
<br />
<br />What made me feel the best about it, is that we have to consider it a tool to fight CF. I got mine to help ease the stress of making sure I was getting enough calories during the day, essentially get rid of one stress in my life.
<br />
<br />Honestly, I had a terrible time with mine at first, wanted to rip it out, cried in frustration and in confusion and in pain. I had a horrible GI office though and that was the most difficult part.
<br />
<br />The thing is, they usually want to put in the actual g-tube initiallly for the first 6-8 weeks to allow the stomach wall and abodomin muscles to heal together. The tube was huge, ugly, in the way... I developed granulation tissue and didnt know what it was for a long time and so though it doesnt always hurt, it looks gross and causes tons of mucus to ooze out of the opening. You have to clean the site from 2-6 times a day. I got the granulation tissue cauterized off and then finally got to 8 weeks and got the g-tube switched with the PEG low profile button... now this I LOVE, it doesnt hurt, isnt in the way, isnt gross, is barely noticebable. My site is healing and everything seems like it is now worth it.
<br />
<br />After being on here, I saw some people got to go straight to the button (either mickey or peg) and I suggest you enforce that rather than the 6-8 weeks of the huge tube.. if you end up getting one. So many people have benefited from a feeding tube, there are still the few that it doesnt help but I see that as being the more rare.
<br />
<br />Another heads up is insurance doesnt like to pay for the feeding tube formulas, if/when you decide on getting the g-tube have your doctors start on that approaval ASAP... I am still fighting with mine. I used scandishakes for a month and actually lost weight... I just bought a case of the correct formula to try to see if it works better and Ive been on that for a week, so far it is way better than the scandishakes, Im not nauseous in the morning and dont feel as full.
<br />
<br />PS: I also wondered about going to the bathroom in the middle of the night... its a pain but you just unplug the pump (Im on a pole but you can get portable ones) and roll it into the bathroom.
<br />
<br />You dont have to stay awake if you are doing night feedings. You flush the tube with water and hook it up and go to sleep. It beeps when its done and you flush and unhook and keep sleeping if yourre me <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />You can do bolus feeds during the day too. There are a few options.
<br />
<br />I know this is long and Im not the best example because I hated mine at first, but it did get better with the button and the right formula.
<br />
<br />I also found in my 'research' that younger kids seem to have the highest success rates and seem to really flourish and gain weight fast... remember she can fight the bugs even better with more weight (I always feel my best when at my highest weight).
<br />
<br />Good luck, I am praying and wishing you a good clinic visit. If you want more info, PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

Cherylwithone

Guest
My daughter had the G-tube at first like most. Hers did not
bother her. Then she switch to the Mic-key button. Depending on how many cans your child gets and the rate of the flow will depend if you need to get up. Malora's would run 7 to 8 hours then I would flush it. She was on 5 to 6 cans for awhile because her weight was so low.

Fast forward....now we notice it at all. It's like having a mole. You know it's there but it is not a big deal. The younger they ar when they start with one the better. You will be able to relax and not stress about growth and all that.

On peeing at night we got a pole along with a small backpack
in case we needed to use in during the day and we were out shopping or something. The company will supply all of this. We never had a problem with getting supplies.
 
C

Cherylwithone

Guest
My daughter had the G-tube at first like most. Hers did not
bother her. Then she switch to the Mic-key button. Depending on how many cans your child gets and the rate of the flow will depend if you need to get up. Malora's would run 7 to 8 hours then I would flush it. She was on 5 to 6 cans for awhile because her weight was so low.

Fast forward....now we notice it at all. It's like having a mole. You know it's there but it is not a big deal. The younger they ar when they start with one the better. You will be able to relax and not stress about growth and all that.

On peeing at night we got a pole along with a small backpack
in case we needed to use in during the day and we were out shopping or something. The company will supply all of this. We never had a problem with getting supplies.
 
C

Cherylwithone

Guest
My daughter had the G-tube at first like most. Hers did not
bother her. Then she switch to the Mic-key button. Depending on how many cans your child gets and the rate of the flow will depend if you need to get up. Malora's would run 7 to 8 hours then I would flush it. She was on 5 to 6 cans for awhile because her weight was so low.

Fast forward....now we notice it at all. It's like having a mole. You know it's there but it is not a big deal. The younger they ar when they start with one the better. You will be able to relax and not stress about growth and all that.

On peeing at night we got a pole along with a small backpack
in case we needed to use in during the day and we were out shopping or something. The company will supply all of this. We never had a problem with getting supplies.
 
C

Cherylwithone

Guest
My daughter had the G-tube at first like most. Hers did not
bother her. Then she switch to the Mic-key button. Depending on how many cans your child gets and the rate of the flow will depend if you need to get up. Malora's would run 7 to 8 hours then I would flush it. She was on 5 to 6 cans for awhile because her weight was so low.

Fast forward....now we notice it at all. It's like having a mole. You know it's there but it is not a big deal. The younger they ar when they start with one the better. You will be able to relax and not stress about growth and all that.

On peeing at night we got a pole along with a small backpack
in case we needed to use in during the day and we were out shopping or something. The company will supply all of this. We never had a problem with getting supplies.
 
C

Cherylwithone

Guest
My daughter had the G-tube at first like most. Hers did not
<br />bother her. Then she switch to the Mic-key button. Depending on how many cans your child gets and the rate of the flow will depend if you need to get up. Malora's would run 7 to 8 hours then I would flush it. She was on 5 to 6 cans for awhile because her weight was so low.
<br />
<br />Fast forward....now we notice it at all. It's like having a mole. You know it's there but it is not a big deal. The younger they ar when they start with one the better. You will be able to relax and not stress about growth and all that.
<br />
<br />On peeing at night we got a pole along with a small backpack
<br />in case we needed to use in during the day and we were out shopping or something. The company will supply all of this. We never had a problem with getting supplies.
 
J

JamieH

New member
I wanted to give you all an update. Reyna's Upper GI went pretty well. It is a horrible feeling to see your little one have to go through something so difficult and not be able to at least hold her hand, but she is a trooper and got through it pretty well.

We went ahead and decided to schedule her for the G-tube. I feel pretty good about the decision. But now I have a new question for you all. Who did your procedure, whether for your kids or yourself? The GI specialist we have been seeing through our CF clinic said he can do it or we could have a surgeon do it. I need educated advice here <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
J

JamieH

New member
I wanted to give you all an update. Reyna's Upper GI went pretty well. It is a horrible feeling to see your little one have to go through something so difficult and not be able to at least hold her hand, but she is a trooper and got through it pretty well.

We went ahead and decided to schedule her for the G-tube. I feel pretty good about the decision. But now I have a new question for you all. Who did your procedure, whether for your kids or yourself? The GI specialist we have been seeing through our CF clinic said he can do it or we could have a surgeon do it. I need educated advice here <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
J

JamieH

New member
I wanted to give you all an update. Reyna's Upper GI went pretty well. It is a horrible feeling to see your little one have to go through something so difficult and not be able to at least hold her hand, but she is a trooper and got through it pretty well.
<br />
<br />We went ahead and decided to schedule her for the G-tube. I feel pretty good about the decision. But now I have a new question for you all. Who did your procedure, whether for your kids or yourself? The GI specialist we have been seeing through our CF clinic said he can do it or we could have a surgeon do it. I need educated advice here <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
H

hockeykid

New member
My GI put in my g tube. I think the best person to place the g tube is an Interventional Radiologist. I believe it is the least traumatic way to have the feeding tube inserted.
 
H

hockeykid

New member
My GI put in my g tube. I think the best person to place the g tube is an Interventional Radiologist. I believe it is the least traumatic way to have the feeding tube inserted.
 
H

hockeykid

New member
My GI put in my g tube. I think the best person to place the g tube is an Interventional Radiologist. I believe it is the least traumatic way to have the feeding tube inserted.
 
J

JamieH

New member
Yeah, I am getting the impression that the GI is a great person to do this. My husband even called the competing Children's hospital in our area and the nurse in the CF clinic there agreed. So I feel better. Thank you all. I know this road will probably be bumpy, but I am very excited to see where it ends up =)
 
J

JamieH

New member
Yeah, I am getting the impression that the GI is a great person to do this. My husband even called the competing Children's hospital in our area and the nurse in the CF clinic there agreed. So I feel better. Thank you all. I know this road will probably be bumpy, but I am very excited to see where it ends up =)
 
J

JamieH

New member
Yeah, I am getting the impression that the GI is a great person to do this. My husband even called the competing Children's hospital in our area and the nurse in the CF clinic there agreed. So I feel better. Thank you all. I know this road will probably be bumpy, but I am very excited to see where it ends up =)
 
J

JamieH

New member
Another update: Gtube is in and we are doing good. The first few days after the surgery were horrible but she got through them and is back to her normal self. She's got the long tube right now, but they will put the PEG in after 3 months. It seems like a long time to wait, but I think it will be OK.

Not to say that it was an easy thing to do, but it definitely has gotten better. I'm still waiting to see her appetite increase. Meal times are still kind of rough but so far her weight is going up.

Thank you all for your prayers and advice. I like being on this side of the issue a lot better <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
You must log in or register to reply here.
Top