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

[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...?!?

 

[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.
<br />
<br />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...?!?

 

[Mommafirst]

Don't these surgeons understand that there is more to these kids than just their disease????? We need to consider their mental well being as well. I'm so sorry the long tube is such a bear. My daughter got the button right away and I wouldn't have done it any other way. She was on pain meds for one day and out of the hospital in 2.

I'm so sad you were misled, it really is aggravating!!!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Mommafirst]

Don't these surgeons understand that there is more to these kids than just their disease????? We need to consider their mental well being as well. I'm so sorry the long tube is such a bear. My daughter got the button right away and I wouldn't have done it any other way. She was on pain meds for one day and out of the hospital in 2.

I'm so sad you were misled, it really is aggravating!!!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Mommafirst]

Don't these surgeons understand that there is more to these kids than just their disease????? We need to consider their mental well being as well. I'm so sorry the long tube is such a bear. My daughter got the button right away and I wouldn't have done it any other way. She was on pain meds for one day and out of the hospital in 2.
<br />
<br />I'm so sad you were misled, it really is aggravating!!!! <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />

 

[Jane]

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> Don't these surgeons understand that there is more to these kids than just their disease?????</end quote></div> </P>
<P> </P>
<P>Absolutely not. Unfortunately.</P>
<P> </P>
<P>Claudette, I feel for you and Sean.  As I've said before, the emotional scarring from the original g-tube decision was the worst my boys have had in all their years of cf issues.  In the long run, it was a life-saving necessity, but it could have been handled in a much better way (keeping the "whole" child healthy includes emotional health).</P>
<P>As soon as the tube heals a bit, it won't be so uncomfortable and Sean can wrap it with an ace bandage.  It can be done!  We also looked into a snug fitting protective shirt to wear over the tube to keep it safe and hidden. Although we never bought it, this is what it looks like:  <A href="<A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A>"><A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A></A> There are other similar kinds.</P>
<P> </P>
<P>Hugs to you.  If you want to talk, PM me.</P>

 

[Jane]

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> Don't these surgeons understand that there is more to these kids than just their disease?????</end quote> </P>
<P></P>
<P>Absolutely not. Unfortunately.</P>
<P></P>
<P>Claudette, I feel for you and Sean. As I've said before, the emotional scarring from the original g-tube decision was the worst my boys have had in all their yearsof cf issues. In the long run, it was a life-saving necessity, but it could have been handled in a much better way (keeping the "whole" child healthy includes emotional health).</P>
<P>As soon as the tube heals a bit, it won't be so uncomfortable andSean canwrap it with an ace bandage. It can be done! We also looked into a snug fitting protective shirt to wear over the tube to keep it safe and hidden. Although we never bought it, this is what it looks like: <A href="<A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A>"><A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A></A>There are other similar kinds.</P>
<P></P>
<P>Hugs to you. If you want to talk, PM me.</P>

 

[Jane]

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> Don't these surgeons understand that there is more to these kids than just their disease?????</end quote> </P>
<P></P>
<P>Absolutely not. Unfortunately.</P>
<P></P>
<P>Claudette, I feel for you and Sean. As I've said before, the emotional scarring from the original g-tube decision was the worst my boys have had in all their yearsof cf issues. In the long run, it was a life-saving necessity, but it could have been handled in a much better way (keeping the "whole" child healthy includes emotional health).</P>
<P>As soon as the tube heals a bit, it won't be so uncomfortable andSean canwrap it with an ace bandage. It can be done! We also looked into a snug fitting protective shirt to wear over the tube to keep it safe and hidden. Although we never bought it, this is what it looks like: <A href="<A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A>"><A HREF="http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html">http://www.hitrunscore.com/a164190-easton-youth-torso-tection-shirt.html</A></A>There are other similar kinds.</P>
<P></P>
<P>Hugs to you. If you want to talk, PM me.</P>

 

[JennyCoulon]

<P>I am sorry to hear this but sometimes it is inevidable. I have an 11 yr old who had to get a g-button after having so much trouble gaining weight about 6 years ago. He got sick and didn't have the "reserve" to get better. He did a week of "cleanout" and then the bard button was placed. It was tough on him as he was sore but I look back now and think why did we wait so long. I do have to say that he is a little self conscious about it showing so he wears a big bandaid over it then a tank top and then his shirt. </P>
<P> </P>
<P>We are currently trying to show the CF team that our 6 year old doesn't need a g-button also but I believe he will eventually have to have one. Mason who is 11 has gained so much weight, is rarely even sick and still plays soccer and everything else just like his friends. Don't feel bad even though your son says it will be the worse summer. Just remember you are doing what is best for him even though he probably doesn't see it now but I know he will in the future. If you have questions please do not hestitate to ask and good luck.</P>

 

[JennyCoulon]

<P>I am sorry to hear this but sometimes it is inevidable. I have an 11 yr old who had to get a g-button after having so much trouble gaining weight about 6 years ago. He got sick and didn't have the "reserve" to get better. He did a week of "cleanout" and then the bard button was placed. It was tough on him as he was sore but I look back now and think why did we wait so long. I do have to say that he is a little self conscious about it showing so he wears a big bandaid over it then a tank top and then his shirt. </P>
<P></P>
<P>We are currently trying to show the CF team that our 6 year old doesn't need a g-button also but I believe he will eventually have to have one. Mason who is 11 has gained so much weight, is rarely even sick and still plays soccer and everything else just like his friends. Don't feel bad even though your son says it will be the worse summer. Just remember you are doing what is best for him even though he probably doesn't see it now but I know he will in the future. If you have questions please do not hestitate to ask and good luck.</P>

 

[JennyCoulon]

<P>I am sorry to hear this but sometimes it is inevidable. I have an 11 yr old who had to get a g-button after having so much trouble gaining weight about 6 years ago. He got sick and didn't have the "reserve" to get better. He did a week of "cleanout" and then the bard button was placed. It was tough on him as he was sore but I look back now and think why did we wait so long. I do have to say that he is a little self conscious about it showing so he wears a big bandaid over it then a tank top and then his shirt. </P>
<P></P>
<P>We are currently trying to show the CF team that our 6 year old doesn't need a g-button also but I believe he will eventually have to have one. Mason who is 11 has gained so much weight, is rarely even sick and still plays soccer and everything else just like his friends. Don't feel bad even though your son says it will be the worse summer. Just remember you are doing what is best for him even though he probably doesn't see it now but I know he will in the future. If you have questions please do not hestitate to ask and good luck.<BR></P>