a rock, and a hard place

[glowingpurpleaura]

So we have been told T who has already had cyrcoid spilt x 2, and LTR needs bilateral cordotomy with laser (think thats the right term lasering the vocal cords?) or, we could have a perm trach. The risk is that he will loose most of his voice from the laser (our problem is right on the vocal cords so the will laser the cords)

So what would you do, laser, or perm trach? I'm really torn as i dont want them to take my baby's voice but then is living with a trach a good option.AGH i dont know, help please.

p.s i hope i dont sound offensive to anyone with a prem trach just a hard decison thats all

[Christamae]

I would keep the voice and the trach. The absolute worst part of my trach is that when I wear the vent I can't talk. It is hard not being able to communicate independently. That's the choice I would make...Tough choice :hug:

[kharmasmama]

Have you done any research on the surgery where they essentially tie one of the cords back? It's reversible if his airway ever grows large enough to sustain him without the cord being tied back. I'd be nervous about permanently lasering the cords open. I've also heard of a surgery where they laser a hold in one or both cords to provide a larger airway and preserve some voice quality. There's a child on this board who's had this procedure. Don't believe that what the doctors tell you is your only option. Children's Hospital of Philadelphia (http://www.chop.edu/service/airway-disorders/home.html) is a great resource for surgery information.

If it came down to it for us, which it might, I would choose to lose the trach and the voice rather than keep both. A trached airway is more unstable, especially for a kid who is otherwise active and developmentally normal. I wouldn't want to stick Kharma with a trach forever and rob her of going swimming, going to the beach, travelling, tasting food fully, or smelling the flowers. A trach is also an obvious difference between her and other kids. I think vocal quality is a less obvious difference. Just what we would do, you have to do what you think is best for T. So sorry that you're even in this position :(

[Ainsley's Mom]

That's a tough call. We may be in that position ourselves one day. I think it's a a personal choice and depends on 1) How impacted your life is by the trach both for the child and the family 2) How much hope there is that things might improve on their own as the airway grows 3) How much at risk the child is for complications due to cordotomy such as aspiration and lung damage. 4) How likely it is that this will fix the problem. You've been through a number of unsuccessful surgeries. Is it possible that even this might not work?

It's a scary decision since outcomes are not guaranteed. But if the voice would still be usable and you aren't concerned that there could be complication for the lungs and the surgeon feels very good about this being successful then I would probably go forward with it. Another thought is waiting and letting the child decide.

[Niff]

I have no words of wisdom but wanted to offer a huge :hug:. That's an awful choice to make. Just know that whatever you decide will be the best choice for your little guy.

[JWorthington]

This is a tough decision to have to make and I really feel for you. If the trach is the only thing preventing T from living a normal life then I would want to lose the trach. It is possible to communicate without a voice, with signs, pictures or electronic devices. But from Christamae's point of view, as someone living with a trach she sees things very differently, and I can completely understand that. It is a very personal decision and a hard one to make for someone else, I wish you the best of luck whatever you decide :hug:

[glowingpurpleaura]

Thank you for all taking the time to reply. Yes susan there is a risk this may not work and then we end up with a prem trach anyway :/ which makes it an even harder choice but i also feel like its our last shot at a trach free life. T has no other ongoing issues apart from airway except for his eyesight but otherwise can live a regular life. I will ask about the tieing back of the cords


thanks all

[jamie]

Just from my own child's point of view, he would rather have his voice and be stuck with the trach, then not be able to speak. but he is an unusual chatter box.

[Kyriae']

Yes, its a personal choice. for me because we basically live in the hospital from trach infections and my little girl has been through alot because of the trach... The trach would be gone.. For me it wouldnt be a hard decision only because this darn trach is the devil to me.. Good luck..

[Ainsley's Mom]

Thank you for all taking the time to reply. Yes susan there is a risk this may not work and then we end up with a prem trach anyway :/ which makes it an even harder choice but i also feel like its our last shot at a trach free life. T has no other ongoing issues apart from airway except for his eyesight but otherwise can live a regular life. I will ask about the tieing back of the cords


thanks all

That does make the decision that much harder. :hug: Although perhaps it makes it easier. If you were assured of success then it at least it's a choice between the two options. The idea that he could lose part of his voice and still have to keep the trach. Well....that would be terrible. Personally I don't think I could take that risk unless it was very small. Of course there is always a bit of risk with any airway surgery that it won't work. I hope it turns out that tying back the cords is an option.

[LKN]

It is a tough call. I have a child who was born without vocal cords. He speaks and his voice is challenging to understand at times, but he has a voice. His little body has adapted and he is vibrating everything in his airway to speak.

I would always opt for no trach. My son is in regular school and gets along just fine with a "different" sounding voice. We encourage him and provide lots of speech therapy. Even if, in your case, the voice was unuseable, there are plenty of options for communicating. A trach is very limiting. I think we get used to it because we have to, but when it is out you realize how oppressive it really is--obviously, if the trach is absolutely necessary then you keep it, but life without a trach is pretty amazing.

[glowingpurpleaura]

Yes we currently dont have a trach and life is much simplier but i dont want to feel like i'm being selfish for wanting a trach free life , LIke i'm wondering if its just me that it bothers . But i suppose a trach impacts a lot of things like going to school unsupervised, sports swimming etc:confused: gah! have asked for an appt so we can ask heaps of pre op questions