My son needs a G-Tube

[jasonterriallen]

My son has been diganosed with CF since he was 2 months old, the scariest time in my life(or so Ithought). He hasn't been very sick only spending a couple times in the hospital. Once for polups in his nose. But now the Dr. says he is not getting enough calories, or burning them off too quickly. He is 8 years old and very hyperactive!! I try to watch everything he eats and calculate the calories, He drinks 2 Scandi shakes a day. I am very nervous about this G-Tube, will he be able to do everything he does now? He likes to play sports, and wrestle around with his brother. If anyone has any advise for my son and myself i would appreciate very much! Thankyou:rose ;

 

[anonymous]

My 4 yr old has had a G-tube for 2 yrs and does everything every other kid does...is extremely active !!
It relieves a lot of the pressure of getting adequate calories and nutrition.
The Mic-Key button G-tube is small,so it won't interfere with anything.
Good luck....you should both do just fine.

 

[proudmom2lilCFer]

My 10 month old son has a g-tube. I was very nervous at the first thoughts about doing it, but I decided to just do it and get it over with. It was by far the best decision. I love it. We have not had any complications. Of course my son isn't as active as yours, but if he is in need of calories, it will pay off in the end. Good luck!

 

[anonymous]

My son is 17 yrs old. It will be 4 yrs at the end of Oct that he has had the tube in. He is very protective of his G button. He is very active too. He played flag football for several seasons with it. He plays baseball and football on the street. His buddies know about the g-button so they don't grab him in that area to tackle him. If you will be concerned about the g button during activities you can always put a piece of gauze and tape or just tape over it.

My son has put on about 50-60 pounds since putting the button in and he looks wonderful and can fight off infections better. My son actually asked the doctor about the G button before the doctor suggested it.

It is a bit overwhleming at first, so much to do and remember. Now it is second nature, no more fights about eating "extra calories"

If you have any more questions or concerns, please ask me.

 

[jasonterriallen]

Thankyou all for your help it is relieving to hear it from people who have delt with this first hand. I can't wait until he puts on some weight! This is the first major thing we have had to deal with in 9 years, thankfully. How soon after your children got the g-tube put in did you see any weight gain? Again thankyou all for your help.

 

[NoDayButToday]

My button hasn't hindered me from doing anything.

 

[anonymous]

My son will be 12 next month and has had his G-tube for about a year and a half. While I really dreaded the surgery, it was the best thing I could have done for him. Prior to him having it we had constant battles at meal time trying to get him to eat. Since he had the feeding tube put in he has gained 20 pounds and feels so much better. The best part is there is no more battling at meal time which we both appreciate. He is very active and we have only had one problem with it, a couple of weeks ago he jumped in the pool and accidentally hit his stomach slightly on the side of his big brother's head popping the balloon. Other than that we have been problem free.

Michael's Mom

 

[bubblesarefun2009]

Have you thought about talking to the dr about getting your child a Port and doing somehting call tpn?
I am doing it now and it's very expencive you could check with insurance to see if they would pay for anythign of it. here is what TPN Means

TPN stands for Total Parenteral NutritionThis is a complete form of nutrition, containing protien, sugar, fat, and added vitamins and minerals as needed for each individual. It is admininstered through an intavenous infusion, usually using a central line. A central line is a special long lasting IV line that goes through a vein directly to the heart. It is usually placed on the chest, though sometimes if the location must be changed frequently it will be placed in other areas such as the groin or the neck.
<b>Mine is Through my port in my chest</b>

Here is a link for more information: <a target=new class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601166.html
">http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601166.html
</a>
I know what your going through. they wanted to put a feeding tube in and stuff then I didnt want to and after they told me that I started to gain weight the most i ever weighed was 110lbs i am 21 years old 5'3 weigh 90 lbs. before all the stuff i went through. I only had 5 more lbs to go and i would be at my goal. now i am working my self up.

this is just an idea to ask the doctor. hope it helps <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My daughter had mickey placed when she was 7 (now 12) and it was the best thing we ever did. Prior to placement she was in the 4th percentile for her weight and she is now at 50th percentile. It is also a blessing when she is too sick to eat because we give her extra feedings during the day so she doesn't lose any weight. Usually she just gets feedings at bedtime. We had discussed TPN prior to g/tube placement - but, doctor said it was a short term fix for a potentially long term problem. TPN is also very dangerous with regards to fat embolus (per doctor).

**my daughter also jumped in pool last weekend did a belly flop and burst her balloon on her tube - just inserted another one and she was right back in the pool**

 

[anonymous]

Well we meet w/ the doctor this friday to set the date for my son jj to have the tube put in. JJ's only concern is if he can join Karati classes or not he really wants too but im not so sure. Other wise he is fine about it. Did it hurt when your daughter popped the balloon? I think i'm just nervous because this is the first big thing to happen to jj since he has been born. I told him he needs to be careful with his button. He said he is going to use it for show and tell! lol He is so funny about this he tries to make me feel better about it, he says "mom dont worry it's not a big deal" He is happy he wont have to eat so much! even though he thinks it's cool he can eat more than his cousin that is 30 years old, and he is only 9. I think it will be ok reading your reply's has helped a bunch, i'll let you all know how it goes. Thankyou all so much!
:rose;

 

[anonymous]

Didn't hurt my daughter at all when the balloon burst. My daughter also wanted to take karate lessons until she went and sat in on one of the classes and saw the other children being struck in the stomach. She decided on her own not to take karate. I was glad it was her decision because I didn't want to be the bad guy AGAIN.

 

[amj]

rose
I 'm 24 w/ cf and I had a feeding tube for 9 years and had
it removed about 3years ago . I was scary to when I had to have but I still did all the same things I did before I had the feeding tube. Here is a thought for you when he gets the feeding to tube. Pierce the feeding tube that what i did the dr. that I had a the time thought was a good idea and he told his other patients about it
if you have any ?
e-mail youngjeewell2004@yahoo.com
amj

 

[anonymous]

Hi my name is Destiny, I am a 26 yr. old female. I know from my own experience that my mom would let us eat whatever we wanted whenever we wanted. She always got us everything we liked so we would snack on things all day. meat is one thing that is really good for us. I have been able to keep my weight up because of the way she was when i was little because i still eat constantly . Try not to watch his calaries and let him eat whatever he wants all the time.
Destiny<a target=new class=ftalternatingbarlinklarge href="mailto:nobody@nowhere.com">Text</a>

 

[NoDayButToday]

What do you mean pierce your feeding tube... like an actual piercing with a hoop through it and everything? What about tube leakage?

 

[amj]

you just pierce the cape

 

[anonymous]

How did the surgery go? The first few weeks our rough until they put the actual mickey in with the extra tube hanging off. I know you all are a bit anxious over it at first and the first time the G-button falls out is another anxious time and it will....it could be bumped loose or the acid in the stomach will eat at the balloon. When ordering your feeding supplies always remember to ask for another button to keep on hand in case of it falling out. The doctor will be able to tell you what size he puts in. ex: French 14 2.5: or French 14 2.7

I am the parent with the 17 yr old boy who has the tubing.
You asked about his weight gain.
As a matter of fact I track it for my very own benefit only,
6 months -he gained 12 1/2 pounds
one year- up 26 pounds to date
2 year - no weight gain (problem with him eating at school and taking pills -he started High School and was getting tired of being hooked up to his feeding tube at night, worked out many deals with him and the nutritionist)
3 years - up 42 1/2 pounds to date
3 1/2 yrs - up 55 1/2 pounds to date
Since he has done so well, they are making a deal with him and he now gets two nights off and he gets to pick what 2 nights he wants off as long as he gets 5 nights out of the week.

 

[jasonterriallen]

The Dr. Appointment was canceled, they made the appt with the wrong Dr. so now we have to wait until November. God i just want to do this and get it done already. It is very frustrating i was so nervous and then i was ok with it and they do that. JJ is upset he cant take karate classes. but is happy he can still play other sports.
Thankyou so much for your help

Terri

 

[anonymous]

You all really got me thinking! My daughter is 13 and she is not even on the weight chart. Sometimes we can get her to the 5th percentile, but most of the time she is to thin to even be on the weight chart.

We have tried everything to NOT have the g-tube placed, but the way you all are talking I think I will talk to the doc. It is surprising to hear so many of you say that it does not get in the way of activities, and how much weight is gained.

We swim on a daily basis in the summer time. Can you swim with a g-tube?

Seana

 

[anonymous]

My daughter swims all the time with her g-tube. She has the mickey button & none of her activities have ever been restricted. We were totally against the g-tube as well - but, she has gained so much weight and her PFT's have shown remarkable improvement.

 

[anonymous]

I have a cystic fibrosis and have a g-tube. it has saved my life. i was so thin and my parents tried everything to fatten me up but nothing seemed to work. my mother was extremely sceptical about it too. now she is so glad we had them do it and she doesnt want them to take it out now! i have recieved a double lung transplant and am doing so well and eating well. they now fell like they can take it out but we arent sure if we want them to because it has helped SOOOO much. i know it seems scary but most likey it will be worth it.