OK, hit me with all the stuff the GI isn't going to tell me! And what should I be asking at the pre-op appointment?

Thank you.

No answers, just want you to know I am thinking of you guys and I know its been a hard decision. You got my back!!

I know I haven't been on the boards very long, but I've read tons of your posts and I know that this was a well-thought out decision. You and Daniel have been through a lot with regards to his feedings......

I'll be thinking about you on the 30th....

~Amanda Ü

Becky, You and Daniel have my support nad thought on the 30 of June. I know it was a very hard decision my Dh and you!((((HUGS))))


Shannon

I was wondering if they will be putting a button in or a long tube. If it is long tube ask how soon you can change to a button because they are much easier to use. Also ask what kind of pump he will be on because you want one that is light and compact. My son has a kangaroo which are big and bulky,and difficult for younger children to carry around. How long will they keep you in the hospital, because you want to make sure that he can handel the feeds and formula. I do wish you luck and if you think of anything feel free to ask.

Melanie.

Good luck with the G-tube placement, Becky and Daniel! I know how hard it has been for you to make this decision! We're all here to support you however we can!

Melanie made good points. Ask what the feeding schedule will be, if he will be on any continuous feeds or even longer bolus feeds, it might a good idea to get a portable pump. Actually, if you ever plan to feed him anywhere but home, it's a good idea to get a portable pump if you can get insurance to cover it. We have a zevex enteralite (http://www.zevex.com) and I highly recommend it. I just snapped a couple pics of Shae with hers so you can get an idea of the size of it. It runs in any position, even upside down, has been dragged, dropped, stood on, sat on, you name it and is still going strong.

I think usually they will put in a foley catheter first (long tube that Melanie mentioned) until the site heals some and then go back and put the button in. I agree with Melanie, ask how long it's going to be, that catheter is the worst. What bothered me the most was how floppy it was, it moved around in the stoma so much it really grossed me out, and scared me too b/c it looked like it may come out. They eventually put a rubber and plastic device around it to hold it in place and that's what we came home with, although that needed to be changed once a week and was horrifying for all of us. I would just ask about things like that, exactly what to expect when he gets out of surgery, exactly what you will be dealing with when he gets home in terms of that type of maintenance.

That's all I can think of and have time for now. I will try to think of more for you.

Here are the pictures. Remember she is the size of about a two year old and has been able to carry her bag herself since she was 18 months old. Granted, I do when I can b/c I know it can be a little cumbersome for her. The first picture is the pump and feeding bad out of her lunch bag. The bottom one is the lunch bag that I keep it in and she carries around. I know, she's a mess, she's got old play clothes on and I haven't combed her hair yet...sorry. :oops:

http://www.infantrefluxdisease.com/shae_pump.jpg

http://www.infantrefluxdisease.com/shae_bag1.jpg

I know, she's a mess, she's got old play clothes on and I haven't combed her hair yet...sorry. :oops:
She's cute as a button anyway, Roni! Thanks for sharing the pics. with us all!

Oh Roni, She is SOOOOOOcute!


Shannon

I know, she's a mess, she's got old play clothes on and I haven't combed her hair yet...sorry.

:lol: I don't even know where D's hairbrush has been for the past three weeks!

Thanks for the advice, Roni and Melanie, and for the support, everyone else.

The GI is gone for three weeks, so we could see him yesterday at 4:30 or two days before the surgery! I knew I'd better check with you all first to know what to ask, so I opted for the last-minute appointment.

I'm pretty sure he'll have the long tube, then the button, but I really have no idea about the rest of it, so I'll be sure to ask. The G tube-fed boy at D's class has a pump that has to stay upright. I only know bc he took off dragging the pump, so I picked up it and followed him and the mom said I was holding it wrong.

:lol: Yes Becky, but I think he can get away with it a little easier than Shae. She has a little bit more hair than he does. Heck, I think she has more hair than I do! :shock: :lol:

I guess that kid's pump didn't look like the Zevex in the picture? Shae has dragged hers across the floor before and it's fine. As long as you take air out of the bag first, you can do backflips with the thing and it will still pump.

Your daughter is the cutest! I think that "bed hair" look is adorable!

Too cute! :P

~Amanda Ü

First- Shea is too cute! What a big grown-up girl for such a little one. ::HUGS::

Second- As I look at Daniel's photo I can't help but admire how handsome he is. I have a friend who was born with cleft palate and she has under gone so much surgery. I am sure Daniel had had to endure the same. Bless his little heart, he is a cutie pie!

Lastly, thankflully Kat has not needed a feeding tube. My heart goes out to all of you who have dealt with this. i had enough trouble taking her in for dental surgery and the endoscopy! So as a patient I have no words of advice except, we will keep him in our thoughts. As a nurse, tubes take getting used to but the surgery is fairly routine for most docs. If you have any questions, write them down and ask the docs and nurses before the surgery. Do not let any question go unasked.

As I look at Daniel's photo I can't help but admire how handsome he is.

:D Thanks, Teresa, I quite agree! And now that he's actually putting a few things in his mouth and chewing (but rarely swallowing), I am so in love with the cute heart shape his face makes while eating! Hopefully I'll be seeing more of that someday!