We can't put it off any longer <sigh>

[CFHockeyMom]

Thanks for the replies everyone. Sorry 'bout the confusion; we weren't told that Sean can't swim, in fact he was specifically told he could but he has decided he won't. We discussed using a swim shirt but he feels it will be too obvious especially until he gets his "button". Of course that won't be for several weeks so "bye bye" summer.
<br />
<br />Ped surgery is placing the tube and I'm not sure why they won't do the button first. It seems most people I've talked to did have to wait some number of weeks before they got the button. I'll call and ask.

 

[hmw]

I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them endoscopically (generally a bard or bard-compatible) and others do them laparoscopically (Mickey or AMT Mini One.) The long tube is placed endoscopically. The buttons that are placed endoscopically are VERY flat against the skin. That was Emily's first and it was essentially invisible under clothing- no exaggeration. It looked like this one.<br><br>eta> I can normally post links without a problem here, but today the site is giving me fits about it. Copy and paste this to see, sorry I can't make it live today! <A HREF="http://www.amtinnovation.com/Non-balloon_Button_Bard.html">http://www.amtinnovation.com/Non-balloon_Button_Bard.html</A><br>

 

[hmw]

I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them endoscopically (generally a bard or bard-compatible) and others do them laparoscopically (Mickey or AMT Mini One.) The long tube is placed endoscopically. The buttons that are placed endoscopically are VERY flat against the skin. That was Emily's first and it was essentially invisible under clothing- no exaggeration. It looked like this one.<br><br>eta> I can normally post links without a problem here, but today the site is giving me fits about it. Copy and paste this to see, sorry I can't make it live today! <A HREF="http://www.amtinnovation.com/Non-balloon_Button_Bard.html">http://www.amtinnovation.com/Non-balloon_Button_Bard.html</A><br>

 

[hmw]

I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them endoscopically (generally a bard or bard-compatible) and others do them laparoscopically (Mickey or AMT Mini One.) The long tube is placed endoscopically. The buttons that are placed endoscopically are VERY flat against the skin. That was Emily's first and it was essentially invisible under clothing- no exaggeration. It looked like this one.<br><br>eta> I can normally post links without a problem here, but today the site is giving me fits about it. Copy and paste this to see, sorry I can't make it live today! <A HREF="http://www.amtinnovation.com/Non-balloon_Button_Bard.html">http://www.amtinnovation.com/Non-balloon_Button_Bard.html</A><br>

 

[schmj4910]

Our son's g-tube was placed in April of this year. I asked for the AMT Mini (after getting wonderful advice from Harriett!) and that is what they put in through open surgery. It has been great! He gained 3 lbs in two months, which is outrageous for a toddler!
<br>
<br>As I'm sure you know, your son will get used to the idea of having the tube. He will find things that work for him. He says he hates it now and won't swim, etc, but he'll change his mind. It will just take some time.
<br>
<br>Many guys and gals wear shirts (or other clothing) when swimming for a variety of reasons. People aren't as "naked" as you would think. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[schmj4910]

Our son's g-tube was placed in April of this year. I asked for the AMT Mini (after getting wonderful advice from Harriett!) and that is what they put in through open surgery. It has been great! He gained 3 lbs in two months, which is outrageous for a toddler!
<br>
<br>As I'm sure you know, your son will get used to the idea of having the tube. He will find things that work for him. He says he hates it now and won't swim, etc, but he'll change his mind. It will just take some time.
<br>
<br>Many guys and gals wear shirts (or other clothing) when swimming for a variety of reasons. People aren't as "naked" as you would think. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[schmj4910]

Our son's g-tube was placed in April of this year. I asked for the AMT Mini (after getting wonderful advice from Harriett!) and that is what they put in through open surgery. It has been great! He gained 3 lbs in two months, which is outrageous for a toddler!
<br>
<br>As I'm sure you know, your son will get used to the idea of having the tube. He will find things that work for him. He says he hates it now and won't swim, etc, but he'll change his mind. It will just take some time.
<br>
<br>Many guys and gals wear shirts (or other clothing) when swimming for a variety of reasons. People aren't as "naked" as you would think. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

We had a g-tube put in on Friday for our 7 month old. We weren't comfortable with the surgical insertion of a mini, so we had the g-tube placed for now and once it has healed, we'll go back and have a button put in. I didn't want to have to take this step, but it's been wonderful so far.

As a parent, for the first time, I feel like our son is finally getting what he needs nutritionally and it's not a fight. Feedings are fun now.

As for pain, he had some pain the day of the procedure, but he was only on tylenol after the first 20 hours. Today, less than 3 full days since the procedure, he's only taking tylenol as needed.

The tube isn't very easy to conceal, but it's super easy to use. As for the swimming, etc., our docs told us no submersion for 2 weeks, then it's fine.

Good luck this week and hopefully, he'll be over the negative part of this very soon. In a way, we're lucky to do it now, none of the teenage attitude here! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

We had a g-tube put in on Friday for our 7 month old. We weren't comfortable with the surgical insertion of a mini, so we had the g-tube placed for now and once it has healed, we'll go back and have a button put in. I didn't want to have to take this step, but it's been wonderful so far.

As a parent, for the first time, I feel like our son is finally getting what he needs nutritionally and it's not a fight. Feedings are fun now.

As for pain, he had some pain the day of the procedure, but he was only on tylenol after the first 20 hours. Today, less than 3 full days since the procedure, he's only taking tylenol as needed.

The tube isn't very easy to conceal, but it's super easy to use. As for the swimming, etc., our docs told us no submersion for 2 weeks, then it's fine.

Good luck this week and hopefully, he'll be over the negative part of this very soon. In a way, we're lucky to do it now, none of the teenage attitude here! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

We had a g-tube put in on Friday for our 7 month old. We weren't comfortable with the surgical insertion of a mini, so we had the g-tube placed for now and once it has healed, we'll go back and have a button put in. I didn't want to have to take this step, but it's been wonderful so far.
<br />
<br />As a parent, for the first time, I feel like our son is finally getting what he needs nutritionally and it's not a fight. Feedings are fun now.
<br />
<br />As for pain, he had some pain the day of the procedure, but he was only on tylenol after the first 20 hours. Today, less than 3 full days since the procedure, he's only taking tylenol as needed.
<br />
<br />The tube isn't very easy to conceal, but it's super easy to use. As for the swimming, etc., our docs told us no submersion for 2 weeks, then it's fine.
<br />
<br />Good luck this week and hopefully, he'll be over the negative part of this very soon. In a way, we're lucky to do it now, none of the teenage attitude here! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ldude916]

I agree with Harriett! I personally would not go through with the surgery if they refuse to immediately insert the button. There is no reason to have the long tubing.

I am 30 and I got my g-tube Sept 2010. The GI surgeon had never placed a button immediately, but I refused to have the tube. He took a few days to research how it is done, and he agreed to do it for me if I agreed to be the guinea pig =). He had the rep from Kimberly Clark at the surgery to make sure the button size was correct and the surgery went off without a hitch. There should not be a reason you can't find a hospital that performs the surgery like this, or who are willing to learn how =) Good luck!

 

[Ldude916]

I agree with Harriett! I personally would not go through with the surgery if they refuse to immediately insert the button. There is no reason to have the long tubing.

I am 30 and I got my g-tube Sept 2010. The GI surgeon had never placed a button immediately, but I refused to have the tube. He took a few days to research how it is done, and he agreed to do it for me if I agreed to be the guinea pig =). He had the rep from Kimberly Clark at the surgery to make sure the button size was correct and the surgery went off without a hitch. There should not be a reason you can't find a hospital that performs the surgery like this, or who are willing to learn how =) Good luck!

 

[Ldude916]

I agree with Harriett! I personally would not go through with the surgery if they refuse to immediately insert the button. There is no reason to have the long tubing.
<br />
<br />I am 30 and I got my g-tube Sept 2010. The GI surgeon had never placed a button immediately, but I refused to have the tube. He took a few days to research how it is done, and he agreed to do it for me if I agreed to be the guinea pig =). He had the rep from Kimberly Clark at the surgery to make sure the button size was correct and the surgery went off without a hitch. There should not be a reason you can't find a hospital that performs the surgery like this, or who are willing to learn how =) Good luck!

 

[CFHockeyMom]

Well, I was told by the Dr. that they don't like to place the button first because they tend not to heal as well as the tube which seemed reasonable so we went ahead with the G-tube... big mistake!!! I have no idea what these Docs are thinking?!?!?! The friggin' tube sticks so far out (perpendicular to his body) there is no way Sean could ever even consider "hiding" it under a normal shirt let alone a swim shirt. I'm devastated. This poor boy will be locked up inside for the next six weeks until the place the button and honestly I can't blame him. We were really mislead.

 

[CFHockeyMom]

Well, I was told by the Dr. that they don't like to place the button first because they tend not to heal as well as the tube which seemed reasonable so we went ahead with the G-tube... big mistake!!! I have no idea what these Docs are thinking?!?!?! The friggin' tube sticks so far out (perpendicular to his body) there is no way Sean could ever even consider "hiding" it under a normal shirt let alone a swim shirt. I'm devastated. This poor boy will be locked up inside for the next six weeks until the place the button and honestly I can't blame him. We were really mislead.

 

[CFHockeyMom]

Well, I was told by the Dr. that they don't like to place the button first because they tend not to heal as well as the tube which seemed reasonable so we went ahead with the G-tube... big mistake!!! I have no idea what these Docs are thinking?!?!?! The friggin' tube sticks so far out (perpendicular to his body) there is no way Sean could ever even consider "hiding" it under a normal shirt let alone a swim shirt. I'm devastated. This poor boy will be locked up inside for the next six weeks until the place the button and honestly I can't blame him. We were really mislead.

 

[Tinymiracle1]

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement but for some reason her tiny body did not do well with it. She ended up placing her knee on it and giving it a little yank. It did not pull out but the hole got a little bigger. Well, it leaked and leaked and developed a crater. She now has an ND tube to bypass anything going into her belly because it all just pours out the hole. The Gtube does stick out quite a bit but we have a net over it to help her not touch it and to get it to heal. The doctor ended up cutting the tube because it was way too long and so it is better smaller. Did they do that for Sean??? It helps make it look smaller and more able to fold the tube close to the body and more hidden under shirts, etc. I am sorry he is so sad and devastated by this. I agree...CF SUCKS!!!!

 

[Tinymiracle1]

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement but for some reason her tiny body did not do well with it. She ended up placing her knee on it and giving it a little yank. It did not pull out but the hole got a little bigger. Well, it leaked and leaked and developed a crater. She now has an ND tube to bypass anything going into her belly because it all just pours out the hole. The Gtube does stick out quite a bit but we have a net over it to help her not touch it and to get it to heal. The doctor ended up cutting the tube because it was way too long and so it is better smaller. Did they do that for Sean??? It helps make it look smaller and more able to fold the tube close to the body and more hidden under shirts, etc. I am sorry he is so sad and devastated by this. I agree...CF SUCKS!!!!

 

[Tinymiracle1]

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement but for some reason her tiny body did not do well with it. She ended up placing her knee on it and giving it a little yank. It did not pull out but the hole got a little bigger. Well, it leaked and leaked and developed a crater. She now has an ND tube to bypass anything going into her belly because it all just pours out the hole. The Gtube does stick out quite a bit but we have a net over it to help her not touch it and to get it to heal. The doctor ended up cutting the tube because it was way too long and so it is better smaller. Did they do that for Sean??? It helps make it look smaller and more able to fold the tube close to the body and more hidden under shirts, etc. I am sorry he is so sad and devastated by this. I agree...CF SUCKS!!!!

 

[hmw]

Oh that really, REALLY sucks C!!! I am so sorry you were misled in what to expect after the surgery. :-( We were given literature to read and shown the actual tube on a doll and that was when I said there was no way I was doing that to my child, esp given it was summertime. The first button she had was placed EXACTLY the same way as the long tube, no big surgery required- down the throat with a lighted scope (endoscopically), involved the EXACT same healing process and was completely flat against the skin. I am so upset for you and Sean. Emily had a hard enough time adjusting to the tube at age 9, never mind dealing with an issue like that.

I would consider asking for them to replace the big tube with an endoscopically placed button right away due to the fact that you were not well informed of what things would be like post-op and how it would affect him (the worst they can do is flatly refuse and you are no worse off than you are right now, right?) This is so unfair to ruin his summer like this. It's one thing to do it to a baby, but an older child...?!?