Hello everyone,
I am wondering how your GI docs work. Mine is SO difficult to get in touch with! I called her 3 days ago regarding my daughter's vomiting (it was a new/different color than ever before) and I've yet to hear back from her. In my message I explained that to her and also said that Maeve's J tube looked a little longer than usual and I wanted to know if that could be the cause. (It's come out before so I wasn't too nervous about that part)
The way our GI works is you call her nurse (we see her at a satellite location from Children's Hospital of Phila.) and she gets in touch w/ the dr. The nurse never even answers the phone-it's all voicemail! Then, she emails the dr and calls you back. You never get to actually speak w/ the dr. The nurse is nice but has no clue-if you ask her any additional little thing she'll say she has to contact the dr again.
So-I've just arrived home from the hospital where they had to give poor Maeve a new J tube because her other one had in fact migrated into her stomach. I had to do all this having never even spoken to the dr!!
We see her next week and if she doesn't give me some good answers to some of my questions, we're switching. It's complicated because of Maeve's heart problems. She needs cardiac anesthesia for all procedures and her GI works at this same hospital. Maeve has also only had a g-j tube for 11 weeks so we're just getting to the button stage and I thought I should stick with one place until we got a button.
Also-who do you contact for tube issues? Our dr. cannot answer those questions either. She refers us to a nurse practitioner who "handles the tubes". She, by the way, told me that the J tube was probably ok-"they give you a few inches lee way, I doubt it's out of her jejunum".
I just wondered if all your GI's were this disjointed or if I should be able to find someone who can cover all our bases.
Oh! One last thing, does anyone know anything about a G-J button? I know they exist but so far CHOP does not use them and I can't stand having that 12" long tube hanging off of her anymore!
Sorry for the length!!
Megan

Whoa, you need a new GI. It SHOULD NOT be that hard to get a question answered!

Our children's hospital has a stoma nurse that we deal with when there are problems with her stoma or her button...there should be someone similiar at your children's hospital.

I have a friend whose son had a GJ tube for awhile, I think he had a button, but am not sure. He was retching and puking too much with it though and they eventually did a jejunostomy and added the separate site for the j-tube. Anyway, I will email her and ask her to pop in and say hi, you may enjoy picking her brain a little. I'm sure that GJ buttons exist but can't give you anymore info than that, sorry.

Good luck next week, let us know how it goes.

Hi Megan,
My son had a GJ for about 7 months. I am sorry to hear of all the problems you are having. It sounds like a horrible set up with your current GI. We currently have a GI who lets me email him directly with questions, and he usually replies pretty quickly the same day. His nurse is also wonderful, and she is the one we would turn to with tube or stoma questions. Anyway, you asked about a GJ button, and that sounds familiar, but my son only had the long tube the whole time he had his. We also had huge problems with it migrating or getting clogged, and averaged going into the hospital once every 2 weeks with problems. We ended up going to a separate G tube and J tube (the J tube surgery is pretty involved) and that has been so much nicer than the GJ. But if it doesn't look like it will be a real long term thing the GJ is good, and hopefully you can get the button. If you have any more questions, please ask!
Julie

Hi Julie! Great to see you here...thanks for popping in!

Who owes who an email? I don't remember... 8)