Gran tissue

[Mom2TwinsPlus1]

Ok so I guess I am calling today and begging the ped for a referal to an ENT, yes we have been trached going on 3 years and have NEVER seen an ENT! We have had no real reason to until now.

A few months ago I noticed a little gran tissue on Emma's stoma. It has got a little bigger but nothing major. It didn't make trach changes hard, it didn't seem to bother her or anything so I was just going to watch it and when she saw her ped in about 2 weeks I was going to show him and see what he thought. My nurse even thought it was not a big deal.

Ok so last night, during tie change her trach slipped out, and I casual slipped it back in, only to notice blood when I went to fasten the other side of the tie. I ended up doing a tube change to see down into the stoma and to get a clean trach in. She was bleeding from the opposite side of where the gran is. Which was odd. I didn't pull on the trach to hurt her or anything so I guess she has a small irritation over there too? So I put the new trach in and put a split sponge on (its been years since I used one, had to ask the nurse to help me! Her fat neck was in the way) and we left the sponge there for about 3 hours and it was only slightly pink when we took it off, the nurse replaced it and the second was dry.

Ok so long story, but I do have a question. Is there anything else I should be doing at home? Besides keeping it clean and dry? Also for those of you who have had to deal with these nasty little things, did you do the sticks at home or have them removed? How bad is the surgery to remove them? Is it a major thing? My nurse said the sticks that burn are a good choice to try at home to avoid surgery but that they can be extremely painful. I don't know if I want to put her through all that pain just to end up doing surgery.

Just need some input, I will call the doc later but by the time we get a referall I am sure it will be about 2 or 3 months before we are actually seen by an ENT! UGH I hate the wait. The ped will help in the mean time I am sure, he is great.

[Mom2TwinsPlus1]

P.S. After I wrote that I called the doctors office and left a message for the nurse. I told them I felt comfortable watching it at home for now, but need to get the ball rolling for an ENT since I know that we will need one fairly soon. I am waiting for a response and will see what they say

[colesmom]

Cole has got some gran tissue on the bottom of the stoma, however, our ENT isn't concerned with it so we have done nothing to it. I'm really no help to you but I sure am glad to hear your getting an ENT. Hope you get some better info and good luck.

[alizesmom]

I've used the silver nitrate sticks on Alize's g-tube stoma but never on the trach. They do cause some irritation and drainage since they burn the granuloma. I also had my nose cauterized with them once. Effective but a little painful. Karen

[drct1245]

We just had some "granuloma" tissue removed this summer. The reason for my quotes is b/c what we called a granuloma, wasn't granuloma, it was something else - but do you think I could remember:hairpull: . We were told by the ENT that granuloma tissue is one that is raw and bleeds, which sounds like yours. In our case it was called something else, which is tissue growth that has skin over it, which is not a granuloma. (maybe someone else can remind me of the name - sorry if it's TMI.) We were told they won't do silver nitrate around the trach b/c it's too harsh. We were also told, to see the ENT if it's raw, bleeding, or impedes on trach change. In addition, the ENT mentioned if there is granulomas outside the stoma or very close to the stoma, then more than likely there are some in the trachea. In our case, Ayden had the makings of one, but nothing major.

So I think your idea of getting that ball rolling to get into see an ENT is a good idea.

[JWorthington]

Yes, you need a referral to an ENT. It is a simple procedure, Sam had it removed earlier this year, just 20 minutes or so under anaesthetic. Left untreated for a long time they can cause problems, though it is fine to leave them in the short term.

Juliex

[Kaylie]

well our Girl is the granuloma Queen.. Kaylie has them all the time, at least it seems like it anyway. She had 100% occlusion of a granuloma inside her trachea, they were not able to remove it all, but did get a great deal. also she gets them alot around her stoma as well. we have had granulomas that impeded trach changes, and it can happen, so just beware and take caution . i am glad that you are getting a ENT and hopefully you can get a bronch and so forth.. best of luck..

[Alex's mom]

We were the same way, no ENT until this past summer when we needed an ENT to check out the fluid in her ears. Even tho we have an ENT now, our general surgeon (who put the trach and g-tube in) is the one we see for gran issues and bronchs. Very early on, Alex had a small gran growing at the stoma of her trach and the surgeon touched it up just once with the nitrate stick and we haven't seen anything since. She does have some fibroid tissue but very small, and not causing an issue. (Dawn, is that what you were trying to think of??)

We have some nitrate sticks to touch up her g-tube stoma, as one will occasionally pop up there. For a few days after, she will grab at the area, so it must cause some discomfort. She normally leaves things alone. (I know, I'm soooo lucky!)

Good luck w/your new dr!

[elijah'smom]

I am no help with granulomas. I hope you can get Emma in to the ENT soon.
Good luck and hope you can get some answers from the doctors.