Mia's bronch and possible lasering procedure

I haven't posted in a while, but Mia is scheduled tomorrow to have a bronch and possible lasering of scar tissue. Â*Mia has severe subglottic stenosis (in terms of size of opening) and we had always expected to have to do major reconstructive surgery to get rid of the trach.

At her last bronch, however, the opening was larger as Mia has grown quite a bit and they were actually able to get the scope through the opening and get a better look at the scar tissue. Â*The pulmo said that he thought that even though the scar tissue covered most of the tracheal opening, it was more of a thin membrane and might be the sort of tissue that could be lasered away. Â*Our ENT looked at the tape and agreed it might be possible. Â*So tomorrow the plan is to go in with a rigid scope and get a better look at the scar tissue. Â*If the scar tissue is actually thin, they will try to laser it away and then apply mitomycin-C to hopefully prevent rescarring. Â*They also plan to try to remove what has become a fairly large granuloma around Mia's stoma (almost like an "U" around the stoma - it started on the left side, the grew around the bottom up the right side.)

My concerns are that Mia had a slight fever yesterday and a small amount of blood when we suctioned. Â*I hope she is not getting sick (we had to postpone this once already). Â*So I hope we can actually do the procedure and then I hope the scar tissue is such they can laser it away and I hope it doesn't come back and I hope the grauloma can be removed. Â*That's a lot of hopes, isn't it?

Does anyone have any experience or thoughts on this type of procedure? (not the bronch itself - we've had plenty of those).

[annerae63]

Rick-
I can't give you any advice on the upcoming procedure-I just wanted to wish you luck and hope that you don't have to postpone it.

[christyw]

Rick, wishing you the best with all of that!! The ENT we had been seeing for two years with gaithy said she needed reconstruction. We got a second opinion and he is more experienced with airways. He said she may just have a flap of scar tissue and we could do to it pretty much what you're saying they are going to try with Mia (i think.) Hopefully it will all work out as you want it to and she'll get her trach out soon.

Christy

[sandra]

We are just starting this process so I can't offer advice but I will keep her in my prayers.

[akabot]

Corey was scheduled to have that done in September for his stenosis. The ENT lasered some and was able to get farther with the bronch than he did before, but in getting deeper in there he found that the scar tissue was thicker than he thought. He also found that the scar tissue was only on one side. The laser technique typically works better with circumferential stenosis. So, Corey had a little taken out, but not enough to help anything. Instead Corey will have the LTP in April.

From my understanding, the application of Mitomycin C after lasering is a relatively new technique. Lasering itself has been around for quite awhile, but they were having problems with regrowth. The early research looks promising as far as the Mitomycin C preventing scar tissue growth.

We tried to see if we could do it to avoid the LTP. In our case it will not work. It's worth a try. If it doesn't work, the LTP can be done later anyway.

Amy

HI!
My son's doc is looking at doing the reconstruction rib graft surgery on him in summer 2004. In september we thought he would be decannulated after removal of scar tissue via laser, but when he got down further he saw that there was some thick tissue developed just above the stoma site. he said that if Jacob would have been younger (he was 6 months at the time) that he would just split the tissue and stent him, but because he was older he could not guarantee that it would not develop back. He tried stitching it out of jacob airway but saw that it was too spongy and said that to guarantee Jacob's airway he would need the reconstructive surgery. I love his ENT - he is board certified in pediatrics and ENT surgery. He has even discussed that there are new meds to cut down on the scar tissue. It sounds like there is more than one he will use for Jacob.

Just some information - I wish you the best of luck. The thought of reconstruction surgery scares the heck out of me, and if another procedure will work for her - it is definitely worth looking into.

I will be praying for her.

Amy

Thanks for everyone's comments. Here's the update on Mia's bronch yesterday. The scar tissue was thicker and deeper than we had hoped, so our ENT decided not to try to laser any away. He also said what we were calling a granuloma around her stoma was really more like scar tissue (on the outside on the skin, not the same as the sacr tissue in the trachea). He "roughed" it up and tried to silver nitrate it away, but it is still partly there, so he said he would have to cut it out when he did the reconstructive surgery and closed the stoma.

He also said that we would definitely have to do a double graft LTP. He said June, but we pushed for May (for both selfish and practical reasons). Now we have to decide whether we want to do a single stage procedure or a two stage one with a stent placed in the first stage. Our ENT said either was possible for Mia and he thought the success rate was similar for either, at least in the ones he had done. Any thoughts?