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Feeding Tube
- Thread starter karon72
- Start date
My son received his G-tube in the end of February. When he was still 4. He is 5 now. It took about 4 weeks to heal completely and then they were able to replace the long temporary tube with the MICKEY button. after that it was still about 2 more weeks before he was ok to do everything with out hurting. He was very causious about hitting his belly on anything, wouldnt even let you hold him. But now, he does everything like its not even there. Which scares me sometimes but, if it falls out we have spares...lol...
hope this helps. If you havent gotten the tube placed yet and you want to see pics of garran's, let me know and I will post them.
hope this helps. If you havent gotten the tube placed yet and you want to see pics of garran's, let me know and I will post them.
HI --
I have two girls with CF. My younger one had the gtube and now the mickey button. She is ten now and has had it for a few years. It is amazing because she gained 20 lbs in the first year!!!!
Anyway, I do remember that it was a very difficult time for us. More emotional I think than anything else. It is a big adjustment. To this day, she is very sensitive about the area. She is always fighting me when I try to look at it or touch it. We just went through a battle where it really needed to be changed, the skin around it was infected and she was impossible. I finally took her into the Dr and they changed it and now she is so much happier!! It is also great for when they need meds. They dont have to swallow you can just put it in the tube.
Being a girl, she is very self conscioius of the area. Luckily, we found bikinis this year that had material branching out from the bust area. She also wears a bigger size shirt so it is not tight.
We were really unhappy with the thought of an IV pole in the room permanently. So, what we did is we went to Target. They have really cute coat hangers. Butterflies for the girls and baseballs (I believe) for a boy. The actual pump tightens to the pole and the handles for the coats hold the bags. It is much more pleasant and unscary for a kid to have to look at each day.
For the most part, I believe that these kids are amazing and bounce back with such strength and grace. So, I am sure that your child will do well!!
Let me know if you need any more info. Debra <img src="i/expressions/heart.gif" border="0">
I have two girls with CF. My younger one had the gtube and now the mickey button. She is ten now and has had it for a few years. It is amazing because she gained 20 lbs in the first year!!!!
Anyway, I do remember that it was a very difficult time for us. More emotional I think than anything else. It is a big adjustment. To this day, she is very sensitive about the area. She is always fighting me when I try to look at it or touch it. We just went through a battle where it really needed to be changed, the skin around it was infected and she was impossible. I finally took her into the Dr and they changed it and now she is so much happier!! It is also great for when they need meds. They dont have to swallow you can just put it in the tube.
Being a girl, she is very self conscioius of the area. Luckily, we found bikinis this year that had material branching out from the bust area. She also wears a bigger size shirt so it is not tight.
We were really unhappy with the thought of an IV pole in the room permanently. So, what we did is we went to Target. They have really cute coat hangers. Butterflies for the girls and baseballs (I believe) for a boy. The actual pump tightens to the pole and the handles for the coats hold the bags. It is much more pleasant and unscary for a kid to have to look at each day.
For the most part, I believe that these kids are amazing and bounce back with such strength and grace. So, I am sure that your child will do well!!
Let me know if you need any more info. Debra <img src="i/expressions/heart.gif" border="0">
Thanks for the responses, I will definitely keep in mind the butterfly coat hanger...I didn't want her to see an IV pole in her room, either. I know this is the right decision for Erin because she has always battled with her weight. I just wanted to know how long it hurt afterward and if it was a hard adjustment. Are your kids able to use the Vest? If so, how long after the surgery? I am sure the docs will go over this, but a lot of questions are floating around.
Erin is actually excited about the Micky button. She is telling everyone. We showed her a picture of it & told her it is to help her gain weight and that she would not always have to eat the 'extra bites'. But the first thing she asked me, "Is it going to hurt"? She has been hospitalized twice (one not cf related) and had two PICC lines. Ever since then, she is a weary about hospitals. It has not even been a year since her last stay (she had a septic hip - FLUKE!!). It was minor surgery, but she still remembers it.
Again, thanks for the good advice and info!
Erin is actually excited about the Micky button. She is telling everyone. We showed her a picture of it & told her it is to help her gain weight and that she would not always have to eat the 'extra bites'. But the first thing she asked me, "Is it going to hurt"? She has been hospitalized twice (one not cf related) and had two PICC lines. Ever since then, she is a weary about hospitals. It has not even been a year since her last stay (she had a septic hip - FLUKE!!). It was minor surgery, but she still remembers it.
Again, thanks for the good advice and info!
Karon,
At first after the surgery it was very difficult to use the vest and we used the old fashioned method of CPT. But after a few weeks I was able to adjust his old vest that had only one side that inflated and the side that didnt I sewed an arch into so it didnt hit his button. after another month or so I was able to use the new vest again that inflates on both sides. He is fine with it now. No pain. Let us know how it works out!
At first after the surgery it was very difficult to use the vest and we used the old fashioned method of CPT. But after a few weeks I was able to adjust his old vest that had only one side that inflated and the side that didnt I sewed an arch into so it didnt hit his button. after another month or so I was able to use the new vest again that inflates on both sides. He is fine with it now. No pain. Let us know how it works out!
My son Eric had a feeding tube put in place in Jan. He had the mickey put in right away. The first few days were the worst because he was really sore. He had it put in on a Friday and was back in school like the next Tuesday or so. He just had to be careful and kids and teachers helped him out with his books. He is in middle school and they have lots of books. We had a replacement one done in June and everything has been going fine. He has gained 12lbs so far and hi lung functions seem to be doing better
studlycfman
New member
I'm 19 now and i've had a mickey for about 4 years. I was 86
pounds before i got it and now I'm 125lbs. The worst pain is
for about 3 weeks post surgery but it still takes a lot longer than
that to get used to it. It took me about a year before I
could comfortably lay on my stomach which was really hard cause
that's how I sleep. I really don't even notice it now.
When I first started had the button I didn't have the vest so
by the time I started using the vest it was no problem. Hope I gave
you a little insight if you have any questions you can always send
me a private message.<br>
<br>
Darren w/ cf
pounds before i got it and now I'm 125lbs. The worst pain is
for about 3 weeks post surgery but it still takes a lot longer than
that to get used to it. It took me about a year before I
could comfortably lay on my stomach which was really hard cause
that's how I sleep. I really don't even notice it now.
When I first started had the button I didn't have the vest so
by the time I started using the vest it was no problem. Hope I gave
you a little insight if you have any questions you can always send
me a private message.<br>
<br>
Darren w/ cf
Thanks everyone! Erin is home now & doing great. She was really sore for the first two days and is still recovering, but able to get around very easily. She had the new one-step button put in, instead of the mickey. Apparently, this one does not inflate. It is pretty flat and very easy to use/clean. I do worry when it comes time to change it, but we won't think of that right now <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Darren, thanks for your insight. Actually, Erin asked me last night when she could sleep on her stomach again. I told her whenever it felt comfortable and she said "Okay, but not tonight".
So far, she is still wanting to eat breakfast...so I can't wait for her next weight check! I will definitely make a post and update everyone.
Thanks for all of your good thoughts!
Darren, thanks for your insight. Actually, Erin asked me last night when she could sleep on her stomach again. I told her whenever it felt comfortable and she said "Okay, but not tonight".
So far, she is still wanting to eat breakfast...so I can't wait for her next weight check! I will definitely make a post and update everyone.
Thanks for all of your good thoughts!
Just wanted to let everyone know that Erin has gained 1.5 lbs in 3 weeks & is finally on the charts <img src="i/expressions/face-icon-small-smile.gif" border="0">. She is receiving 3 can of pediasure at night as a boost to her normal diet. At first, she didn't feel like eating, but now everything seems back to normal. She is already filling out & has TONS more energy (I didn't think it was possible). She started to do the vest again with the foam insert to protect her button, so life is getting back to our normal routine.
On a side proud parent note...she started soccer this week and is the fastest girl on her team <img src="i/expressions/face-icon-small-smile.gif" border="0">
On a side proud parent note...she started soccer this week and is the fastest girl on her team <img src="i/expressions/face-icon-small-smile.gif" border="0">