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Old 10-16-2004, 07:50 AM
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Jessica's Mom Jessica's Mom is offline
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...... how do you know where your child is breathing from? The stoma or her nose and mouth? As most of you know, Jessica pulls her trach out alot! Now we are up to easily 20 to 40 times a day. I get so annoyed, that I just take the darn thing off of her neck and let her walk around with out it for a while. She is fine. I know she breathes out the stoma because she makes "farting" noises by putting her chin down and covering the hole - she thinks she is the funniest thing walking when she does this, but how do I know if she is breathing out her nose and mouth? I do notice after about 10 minutes or so, she does become more vocal but then I get nervous and put the trach back in because I am scared, not because she is having trouble.

We were at my sisters last night and I swear, everytime I walked away from her, she pulled the trach out, not because she was mad, this was more like - Ah mommy gone, now I can take it out! I am so confused? Does she still need it? I ask her if she wants her trach back in and she will say no? But eventually I stop asking and put it back in anyway. My sister seems to think it is a sign that she doesn't need it anymore?

But when she had her T&A done and her last bronch, on 9-7-04 the doctor had said, that in the spring we will probably have to do the LTP? Any suggestions would be greatly appreciated... Thanks in advance...
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Last edited by Jessica's Mom : 04-05-2011 at 04:40 AM.
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Old 10-16-2004, 08:35 AM
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Wow,
I can see where you would be so confused...most children (James included )when the trache came out really did not do well breathing..James had stenosis and when his trache came out (prior to his LTP) he would turn a lovely shade of blue.(.not pretty)..
To do a test I would put my finger over her trache(while she is hooked up to the pulse ox) and see if you can feel her breath out of her nose or mouth...that is how I see if James is doing ok since we have been scheduled for decanulation... which is October 20th.. Good luck..
Ellen
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Old 10-16-2004, 09:08 AM
christyw christyw is offline
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I know you probably don't want to tell your doc about these things.. or maybe you have, but I know I probably wouldn't have! Still, you could mention that when she pulls her trach out a million times daily, that she seems fine. Maybe he will then ask how long it has been out, and you could enter the conversation that way.

Just because she does all right for 10 minutes doesn't mean she'll be ok trach free, but it's a much better sign of it than if she stopped breathing all together!

If you covered her stoma, maybe with your hand and some gauze...you would then force air into the upper airway and see how that works. This is scary territory though. If the doc really thinks an LTP is warranted, then it SHOULD be warranted. However, some docs are WRONG. Have you had any other ENTs look at her?

Christy
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Old 10-16-2004, 10:15 AM
Olga Olga is offline
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Perhaps you could try putting something strong smelling near Jessica and see if she can smell that. You could do this while the trachy is in and cover the hole up with your finger. I knew Grace's airway was opening up when we would walk into a supermarket, when you could smell fresh bread straight from the ovens, and she would say mmm that smells nice. This used to happen just before she was decannulated. Good luck. hopefully the end is in sight. Olga
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Old 10-16-2004, 01:13 PM
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Thanks for all of the responses so far. 1st - Ellen, Jessica doesn't like to have her trach covered, only out! Its so confusing. She is tolerating the Passive Muir Valve better, but like anything else, it stays on until she is bored and she pulls it off. (She does not wear humidvents any more. When we are outside and at parties, I try to keep them on her, but they just seem to encourage her to pull them off, and then pull the trach out. 2nd - Val and Christy - no, I haven't really told the doctors about this, I want to, but I just hate going to the doctors, and I really wanted her T&A done, before I said anything. I guess I should make an appoinment and see what the ENT thinks. I do know that she is breathing out the stoma at first then the longer the trach is out the more verbal she becomes. After posting this this morning, I took the trach off of her because after 3 pull outs, I take it off, and left it out today for about 20 to 30 minutes. Well she didn't get what she wanted and there was no trach to pull out, so she threw her self to the ground (like a typical 2 yr. old) and I got scared, to as I was trying to put the trach back in, she started to CRY. I mean loud real baby crying! I couldn't believe it, put of course I was so nervous I put the trach back in.......... Yes, Christy we did have another ENT look at her last year, and we didn't really like him that much, so we never went back. I really like my ENT now, he really respects my decisions and listens to me. There is really no reason why I haven't told him about this except that my goal was the T&A first. My ENT knows how much I hate going to see him, he didn't even make me come in for the follow up visit after the T&A. I asked him and he looked at me and said, no, you'll know if there is a problem! I like that, you just don't get that kind of respect all the time from doctors, so I do trust him. One thing I have learned is even doctors don't know everything, so maybe something has happened since her last bronch and T&A? Who knows? I do know that my ENT has been putting off the LTP, maybe he really does believe she will out grow her stenosis? The stethoscope thing sounds like a good idea, I just need to get a new one, my children seemed to have ruined the four I had! 3rd - Olga, this is something that I have always wondered. I know Jessica can breathe out her nose and smell things. When she is sick, sometimes her sats are low, well after I suction her nose, they go right back up! When something smells bad, she will hold her nose. It is strange, I have told other doctors that she breathes out her nose, but I think they just think I am nuts. So I guess this answers my question if this is a good sign? If she is moving air out her nose, she HAS to have some sort of an airway because it is all connected right?
Thanks again everyone!
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Last edited by Jessica's Mom : 04-05-2011 at 04:40 AM.
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Old 10-16-2004, 03:59 PM
Momi2AntnJadyn Momi2AntnJadyn is offline
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I think that it's a great sign that she does so well without her trach... one second with the trach out for Jadyn during a trach change panics her because she cannot breathe AT ALL without it... she can't get air in her stoma without the trach in place... so I think the fact that Jessica does well without the trach there is a good thing that you should talk to her doctors about. Maybe when the trach is in place, it takes up too much of her airway for her to breathe around, but when it is completely out, she can breathe fine through her nose and mouth? Maybe if you downsized the trach size, that would help?
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and Jadyn (2 yrs. old)

Jadyn's page on tracheostomy.com
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