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

C

CFHockeyMom

New member
<P>Yep, it's true. Sean is getting a G-tube next week. No one is happy about it least of all, Sean. He's sworn up and down that he will be giving up all activities and that without a doubt, I am ruining his life. Of course I know I'm not ruining his life, we're just trying to get him back on the growth chart before it's too late. However I know this will be emotionally challenging for him. When he tells me his summer will be the worst ever, I can't really argue with him... no swimming or tubing means our two vacations will be more like torture than vacation.</P>
<P>As an added bonus Sean gets to do a three week course of antibiotics.</P>
<P>It's been said before but, "CF sucks!"</P>
<P> </P>
 
C

CFHockeyMom

New member
<P>Yep, it's true. Sean is getting a G-tube next week. No one is happy about it least of all, Sean. He's sworn up and down that he will be giving up all activities and that without a doubt, I am ruining his life. Of course I know I'm not ruining his life, we're just trying to get him back on the growth chart before it's too late. However I know this will be emotionally challenging for him. When he tells me his summer will be the worst ever, I can't really argue with him... no swimming or tubing means our two vacations will be more like torture than vacation.</P>
<P>As an added bonus Sean gets to do a three week course of antibiotics.</P>
<P>It's been said before but, "CF sucks!"</P>
<P></P>
 
C

CFHockeyMom

New member
<P>Yep, it's true. Sean is getting a G-tube next week. No one is happy about it least of all, Sean. He's sworn up and down that he will be giving up all activities and that without a doubt, I am ruining his life. Of course I know I'm not ruining his life, we're just trying to get him back on the growth chart before it's too late. However I know this will be emotionally challenging for him. When he tells me his summer will be the worst ever, I can't really argue with him... no swimming or tubing means our two vacations will be more like torture than vacation.</P>
<P>As an added bonus Sean gets to do a three week course of antibiotics.</P>
<P>It's been said before but, "CF sucks!"</P>
<P><BR></P>
 
T

theLostMiler

New member
Why can't he swim? I swim with my g-tube... I can understand tubing if he is on his stomach but if he is on his back he should be fine.... Maybe the first 6 weeks until the track is healed up but after that he should be good to go right?!

But yes, cf sucks and its hard to do ivs in the summer b/c you cant swim, I would rather have ivs in the winter for sure!
 
T

theLostMiler

New member
Why can't he swim? I swim with my g-tube... I can understand tubing if he is on his stomach but if he is on his back he should be fine.... Maybe the first 6 weeks until the track is healed up but after that he should be good to go right?!

But yes, cf sucks and its hard to do ivs in the summer b/c you cant swim, I would rather have ivs in the winter for sure!
 
T

theLostMiler

New member
Why can't he swim? I swim with my g-tube... I can understand tubing if he is on his stomach but if he is on his back he should be fine.... Maybe the first 6 weeks until the track is healed up but after that he should be good to go right?!
<br />
<br />But yes, cf sucks and its hard to do ivs in the summer b/c you cant swim, I would rather have ivs in the winter for sure!
 
M

mag6125

New member
I'm surprised you say no swimming, I just had a g-tube placed a month ago and I was told before I was discharged that I could shower, bath, swim like normal. I wasn't thrilled about getting one either but it's honestly not been as bad as I thought. The only annoying thing is having the tube just hanging there or getting it snagged on something. When I go out I wrap/tape it down or wear a tighter tank top under my shirt to keep it from hanging out below my shirt. Also have they talked to you at all about having it switched to the mic-key after it's healed? I was told I have to wait three months but then they'll change it and it'll be pretty much unnoticeable unless I'm wearing a bathing suit.
 
M

mag6125

New member
I'm surprised you say no swimming, I just had a g-tube placed a month ago and I was told before I was discharged that I could shower, bath, swim like normal. I wasn't thrilled about getting one either but it's honestly not been as bad as I thought. The only annoying thing is having the tube just hanging there or getting it snagged on something. When I go out I wrap/tape it down or wear a tighter tank top under my shirt to keep it from hanging out below my shirt. Also have they talked to you at all about having it switched to the mic-key after it's healed? I was told I have to wait three months but then they'll change it and it'll be pretty much unnoticeable unless I'm wearing a bathing suit.
 
M

mag6125

New member
I'm surprised you say no swimming, I just had a g-tube placed a month ago and I was told before I was discharged that I could shower, bath, swim like normal. I wasn't thrilled about getting one either but it's honestly not been as bad as I thought. The only annoying thing is having the tube just hanging there or getting it snagged on something. When I go out I wrap/tape it down or wear a tighter tank top under my shirt to keep it from hanging out below my shirt. Also have they talked to you at all about having it switched to the mic-key after it's healed? I was told I have to wait three months but then they'll change it and it'll be pretty much unnoticeable unless I'm wearing a bathing suit.
 
J

Jane

Digital opinion leader
Yes it sucks, I'm sorry for what you're going through. If its any consolation, tell Sean my boys were 13 and 9 when they got their g-tubes. They are now 20 and 16. They have played town baseball and basketball, participated in all scouting activities (including overnight camp), go on vacation and on sleepovers, swim and a number of other "normal" activities. You make it work, because it is best for your health. Its not always easy, but in the long run, he will be healthier.
Good luck, I understand.
 
J

Jane

Digital opinion leader
Yes it sucks, I'm sorry for what you're going through. If its any consolation, tell Sean my boys were 13 and 9 when they got their g-tubes. They are now 20 and 16. They have played town baseball and basketball, participated in all scouting activities (including overnight camp), go on vacation and on sleepovers, swim and a number of other "normal" activities. You make it work, because it is best for your health. Its not always easy, but in the long run, he will be healthier.
Good luck, I understand.
 
J

Jane

Digital opinion leader
Yes it sucks, I'm sorry for what you're going through. If its any consolation, tell Sean my boys were 13 and 9 when they got their g-tubes. They are now 20 and 16. They have played town baseball and basketball, participated in all scouting activities (including overnight camp), go on vacation and on sleepovers, swim and a number of other "normal" activities. You make it work, because it is best for your health. Its not always easy, but in the long run, he will be healthier.
<br />Good luck, I understand.
<br />
 
H

hmw

New member
Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll pull it out & try to stay on his back ...but I have to say I'm surprised. We were told any water that is safe to swim in/swallow is fine w/the gtube.
<br>
<br>I am also wondering: what kind of tube is he getting? Make sure he is getting the button from the start and not one of those long PEG tubes. If the GI won't do a MicKey or bard-type button from the start, call ped surgery and see if they will. It may make a big difference in how he handles all of this. Emily got her tube at the beginning of summer last year and I refused to make her go through summer with that long thing hanging out of her when it was not medically necessary- GI only did the long PEG so we went through surgery.
<br>
<br>Wishing the very best and that this helps him. It's been a godsend for Emily (now 10).
 
H

hmw

New member
Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll pull it out & try to stay on his back ...but I have to say I'm surprised. We were told any water that is safe to swim in/swallow is fine w/the gtube.
<br>
<br>I am also wondering: what kind of tube is he getting? Make sure he is getting the button from the start and not one of those long PEG tubes. If the GI won't do a MicKey or bard-type button from the start, call ped surgery and see if they will. It may make a big difference in how he handles all of this. Emily got her tube at the beginning of summer last year and I refused to make her go through summer with that long thing hanging out of her when it was not medically necessary- GI only did the long PEG so we went through surgery.
<br>
<br>Wishing the very best and that this helps him. It's been a godsend for Emily (now 10).
 
H

hmw

New member
Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll pull it out & try to stay on his back ...but I have to say I'm surprised. We were told any water that is safe to swim in/swallow is fine w/the gtube.
<br>
<br>I am also wondering: what kind of tube is he getting? Make sure he is getting the button from the start and not one of those long PEG tubes. If the GI won't do a MicKey or bard-type button from the start, call ped surgery and see if they will. It may make a big difference in how he handles all of this. Emily got her tube at the beginning of summer last year and I refused to make her go through summer with that long thing hanging out of her when it was not medically necessary- GI only did the long PEG so we went through surgery.
<br>
<br>Wishing the very best and that this helps him. It's been a godsend for Emily (now 10).
 
C

CFHockeyMom

New member
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.

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.
 
C

CFHockeyMom

New member
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.

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.
 
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