G-tube removal

In December, we received approval from my daughter's GI doctor to remove her g-tube. He recommended we wait through flu season, etc. My daughter is normally sick (cold, cough, etc.) so I waited until last Saturday (7/30). She finally was minimally coughing and on an antibiotic, so I figured no better time than now. The surgeon instructed removing and putting gauze/tegaderm.

Monday I called the surgeon to inform him that it is still leaking horribly. He instructed me to keep it as dry and clean as possible and give another few days. Thursday I called again. I was informed that he is going on vacation the next day and I should try to get the tube back in until he is back on AUGUST 18. The hole is so small now, the tube cannot be placed back in.

He then suggested I take her to the emergency room and see what they have to say. 3 hours in the ER and no help - we left in the same shape, except with 5 boxes of gauze (how generous). The GI doctor (different hospital) said that he would see her but couldn't close it up as he is not a surgeon. The surgeon at that hospital is also on vacation (even though he won't do the surgery either because he did not do the placement). The GI doctor literally broke off the top of a q-tip and placed it over the hole and sealed with a bandaid and said - see how that works (which lasted the hour drive home and the first movement of her out of her car seat produced leaking again).

Today, now 9 days after the tube has come out, she is still leaking, her cough is now coming back and I'm still getting no help.

Apparently the "back-up" surgeon is out of a hospital that does not take our insurance and I'm at my wits end. I've been in contact with 3 different hospitals and no one is helping me.

The leaking does not bother my daughter 24 hours a day, but at the end of the day after all the leaking, etc., the hole starts to get very irritated and sometimes to the point of bleeding - then, yes, it bothers her very much.

We have tried everything, even putting malox onto her stomach.

Does anyone have any other suggestions? I'm desparate.

Thanks.

[Whitney]

Caryn

In "emergency" situations your insurance has to cover out-of-network providers. I would contact them and explain the situation and see if you can get them to cover the backup doctor. Does the backup doc have privileges at your normal hospital?

Good luck...

Whitney

No, they said that he was out of this other hospital. I will contact our insurance company - thanks.

[Kim~Jacob's mom]

Caryn,
I felt like i could have been reading my own post. Two and half weeks ago Jacob had his gtube taken out and boy did we have problems. His never closed on its own. (i knew it wouldn't) He had it out on tuesday and by thurs the food was still gushing out like a gyser. His also got so red, bloody from the breakdown. He was miserable. I could have kicked myself for letting them take it out without a surgical closure in the first place. So i went back to Our GI and told them it had to be surgically closed. Our GI doc wanted to wait two weeks to see if it would heal by its self. No way i said. Any way i made my point and the tube was put back in and surgery was scheduled the next week. Sorry i started rambling.

Here is one thing they tried on Jacob. Ask them to use a stoma paste to close the stoma. it should work since you said your daughter's hole is alot smaller. It wouldn't work on Jacob because the stoma was still so big and wet making it hard for the paste to stick.

It is some kind of protein paste that can be absorbed into the body. They fill the hole and send u home with the tube to add more if needed. I think that might work for you.

I hope that helps,
kim

[Zoe's Mom]

We were once told that if no one in our network could provide us a service, they had to cover us. Eg. when Zoe was in the hospital, there wasn't a doc in the network who could/would preform the eye tests necessary. A doctor from another network came to see her and our insurance covered it completely.
Good luck! Let us know what happens!
Lora

If anyone can believe this, I still have not heard back from any of the offices that I put calls into today (go figure - they are probably like "it's that nag again"!).

My sister just called me. She works for a OBGYNE. She has a friend who works for a surgeon. She put a call into her friend earlier this morning but did not tell me because she was not sure what she would find out. It turns out that this surgeon's office does g-tubes frequently. They have no idea who we are, but he is willing to take a look at her tomorrow. He did not want to see her in his office but in ambulatory care so if he needs to do something, he'll do it right away.

Unbelievable, all these doctors that she has and some guy that has no clue who we are will take a look at her as a favor because the rest of the guys can't help us out - ugh!!

I swear, nothing is ever easy. I'm not getting my hopes up for tomorrow, but hopefully he will be able to help us out.

I'm glad your sister was able to help. Good luck!

Theresa
Bridget's Mom

[lac]

I can't believe what i'm reading. I think the next step I would have taken was to talk to the Chief of GI or someone up top or to a different hospital if that was possible. However, it sounds like you have thing in control now for the most part and i hope worked out and you get somewhere tomorrow. Keep us posted...

[Whitney]

I hope you have some luck tomorrow. Can your pediatrician help out? I would go to the ER again and MAKE them have someone fix it...

I am sure you have already thought of all of that....

Good luck

[Zoe's Mom]

Good luck tomorrow...I hope everything works out.

Lora