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Being referred for a g tube


Forum: FTT and Weight Gain Issues

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  #1  
August 22nd, 2008, 02:43 PM
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My son had a GI appt this past Wednesday and he has lost weight again. At his last appt 2 mos ago his GI told us that we needed to strongly consider a g tube for him and at the appt on Wed she said it is time. We have been trying to avoid it for about a year now and he has make no progress weight wise - well he has gained, but he loses it. He has many other issues going on and even though I really don't want to go the g tube route, I think it is what will be best for him. We have an appt to discuss it w/ the surgeon on Sept 10th. I am nervous and sad.

Jenn
Mommy to Kendall, Cade and Colton
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  #2  
August 24th, 2008, 09:46 AM
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good luck at the appt. i am sure it must be scary but if you think it will help, then that's what matters most. please keep us posted. i hope he makes some progress soon!
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  #3  
August 24th, 2008, 02:43 PM
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good luck at the appt. i am sure it must be scary but if you think it will help, then that's what matters most. please keep us posted. i hope he makes some progress soon![/b]

Thank you Lisa - I am really nervous about it all. I have talked to most of his docs about it (reg ped, endocrinologist, immunologist, pulmonologist) and they all think that he will thrive with the g tube. That still doesn't make it any easier...

Jenn
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  #4  
August 26th, 2008, 09:03 AM
ThatStaceyGirl's Avatar Oh noes!
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My son has a G button and I remember how I felt about it.

I initially disagreed to my son's G button surgery because I thought it meant I would never be able to feed him by mouth again. I was wrong though because I can still supplement him with whatever he'll agree to eat.

Now that he has the G button it has relieved some of my stress. If he's not eating enough by mouth I can use his feeding pump and know he's getting the calories he needs.

I was also sad when I was told Kade needed a G button.

I do hope your son the best and I will keep your family in my thoughts and prayers.
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  #5  
August 26th, 2008, 04:01 PM
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Quote:
good luck at the appt. i am sure it must be scary but if you think it will help, then that's what matters most. please keep us posted. i hope he makes some progress soon![/b]

Thank you Lisa - I am really nervous about it all. I have talked to most of his docs about it (reg ped, endocrinologist, immunologist, pulmonologist) and they all think that he will thrive with the g tube. That still doesn't make it any easier...

Jenn
[/b]
i know it doesn't. my son never needed any help other than extra calories but my niece did need a ng tube (which i know is not the same) for a bit of time. even that was hard on my SIL, so i can only imagine how you feel. we're sending you support vibes. he'll do great, i'm sure of it.
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  #6  
August 27th, 2008, 03:04 PM
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Now that he has the G button it has relieved some of my stress. If he's not eating enough by mouth I can use his feeding pump and know he's getting the calories he needs.

I was also sad when I was told Kade needed a G button.

I do hope your son the best and I will keep your family in my thoughts and prayers.[/b]

Thank you for your kind words! I am hoping to relieve some of my stress too - and also my obsession with counting all his calories to see if he is even near his goal.

I just wanted to ask you a couple questions if you don't mind.

What kind of button does Kade have and do you like it? Why or why not? And what kind of pump do you use and do you like it, why or why not? I am not sure if we will have a choice as far as the button goes. I have a whole list of questions that I plan to ask the surgeon at our appt.

Thanks for your help!

Jenn
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  #7  
August 29th, 2008, 10:42 AM
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[quote]
Thank you for your kind words! I am hoping to relieve some of my stress too - and also my obsession with counting all his calories to see if he is even near his goal.

I just wanted to ask you a couple questions if you don't mind.

What kind of button does Kade have and do you like it? Why or why not? And what kind of pump do you use and do you like it, why or why not? I am not sure if we will have a choice as far as the button goes. I have a whole list of questions that I plan to ask the surgeon at our appt.

Thanks for your help!

Jenn

I'll do my best to answer any questions you have Kade has a Boston Scientific EndoVive One Step Button.
Here's a picture of it. It's not a great picture but the button opens much like a valve on a beach ball. The blue part you see is the feeding tube attachment that is inserted into the button.


Now that I know how to use the G button, I love it! I've also heard great things about mic-key buttons.

We use a Kangaroo Joey for the feeding pump. Super easy to use. You set the flow rate, prime the pump so all the air is out of the tube, and set it to "Run". Once the bag empties the pump will beep to alert you. It also beeps if there is a clog in the tube. It's a pretty loud alert. I can be in my bedroom and hear it in my son's room.

I will tell you one thing that the doctors may not tell you at first. I know mine didn't and it made me very upset. With Kade's kind of button I can also do bolus feedings. That's the kind of feeding that you do manually without a pump. There's a tube you can fill with your childs liquid nutrition and then once the tube is lifted the liquid is gravity fed into the belly. Not all children are capable of handling bolus feedings. It's a stomach sensitivity problem. I went for months trying to feed my son with bolus feedings during the day and it never seemed to work.

After meeting with his developmental ped. I learned it's ok not to do the bolus and to use the pump at all times for feedings. Kade can do 4 ounces of liquid in under 45 minutes, 3-4 times a day.

If there's anything else you would like to know feel free to ask. I don't consider any of this too personal.
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  #8  
August 31st, 2008, 06:56 PM
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Stacey,
Thank you for sharing all of your info! I have been trying to do research on different buttons and I haven't see the one your son has. I think that the hospital here mainly uses the mic key - but I will ask all of that when we have our appt.

As far as the bolus feeds, we have discussed possible options briefly with our GI and I think it will just be a trial and error type thing at first. I think what we may try is a continuous drip at night and no tube feeds at all during the day - but who knows if that will work or not. Plus, I have no idea what he will be able to tolerate.

I'll probably have more questions for you after our appt and after our surgery.

Thanks again for all your help!

Jenn
Mommy to Kendall, Cade and Colton
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  #9  
August 31st, 2008, 10:58 PM
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Best of luck to you and to him. I hope your appt on the 10th goes well.
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  #10  
September 1st, 2008, 10:03 AM
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Best of luck to you and to him. I hope your appt on the 10th goes well.[/b]

Thanks Renee!! I will update after we get back.

Jenn
Mommy to Kendall, Cade and Colton
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  #11  
September 5th, 2008, 12:28 PM
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Join Date: Sep 2008
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Quote:
My son had a GI appt this past Wednesday and he has lost weight again. At his last appt 2 mos ago his GI told us that we needed to strongly consider a g tube for him and at the appt on Wed she said it is time. We have been trying to avoid it for about a year now and he has make no progress weight wise - well he has gained, but he loses it. He has many other issues going on and even though I really don't want to go the g tube route, I think it is what will be best for him. We have an appt to discuss it w/ the surgeon on Sept 10th. I am nervous and sad.

Jenn
Mommy to Kendall, Cade and Colton[/b]
A friend of mind sent me your post. I have a son who is profoundly disabled. I...like you didn't want him to have a G-button. But, about five years ago we had no choice but to put one in. He has a Mic-Key and has been doing great. I know this is very difficult for you...I cried thinking what could I have done to prevent this...but realized that there was nothing I could have done differently. My son can have no food by mouth, but we can put a little taste of things in his mouth. His father and I chose not to do the fundoplication because he had no reflux. We saw no reason to do more then needed to be done. This is something though that you need to discuss with your doctor and think very carefully about. If you have any questions ask away. My son is now 18 and still gaining weight. By the way...I have four girls younger then him. Personally I think all babies should come equipt with one this way they can't spit the lovely tasting medication back in your face.
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  #12  
September 8th, 2008, 07:20 PM
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Quote:
A friend of mind sent me your post. I have a son who is profoundly disabled. I...like you didn't want him to have a G-button. But, about five years ago we had no choice but to put one in. He has a Mic-Key and has been doing great. I know this is very difficult for you...I cried thinking what could I have done to prevent this...but realized that there was nothing I could have done differently. My son can have no food by mouth, but we can put a little taste of things in his mouth. His father and I chose not to do the fundoplication because he had no reflux. We saw no reason to do more then needed to be done. This is something though that you need to discuss with your doctor and think very carefully about. If you have any questions ask away. My son is now 18 and still gaining weight. By the way...I have four girls younger then him. Personally I think all babies should come equipt with one this way they can't spit the lovely tasting medication back in your face. [/b]
Thank you for your reply! I am getting more used to the idea each day. I am still pretty nervous about it and I worry about how Cade will handle it, but I know that it is what he needs. I am getting my list of questions ready for our appt w/ the surgeon on Wed - can you think of any questions you think I should ask him?

Thanks!

Jenn
Mommy to Kendall, Cade and Colton
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