removing the trach

[Jodi (Sydney's Mom)]

For those of you who remove your child's trach at home, does your child still breathe thru the stoma while the trach is out? Â*Or, how do you know they are breathing thru their nose and mouth?

The reason I ask is because the other day, I was changing Sydney's clothes. Â*She was standing up and I pulled her shirt off over her head and went to do something else nearby. Â*I heard a funny sound coming from her trach...she had her passe muir valve on but it sounded like she needed suctioned. Â*Normally with the valve on, I never hear that sound so I thought she had coughed the valve off. Â*I went over to her to put the PMV back on and I saw that the trach was just hanging there outside of her stoma. Â*She was just standing there like nothing was wrong. Â*I, of course, was in a state of panic and she's walking around playing like normal. Â*She went over to watch tv and sat there without any problems or signs of distress at all. Â*I did get a trach and put it in while she was watching tv, but I'd say it was out a good 5 minutes without any problems. Â*What I don't know is if she was breathing thru the stoma or if she was actually breathing thru her nose and mouth. Â*She now wears her PMV all day except for nap time, so she's used to breathing out her mouth. Â*We have a pre-op appointment tomorrow with her ENT and then a scope is scheduled for the 21st of May. Â*Could it be that there's actually some improvement in her VCP, or am I just dreaming? Â*Should I tell the ENT this happened? Â*Thanks in advance for your help!

Jodi

[p's mom]

Jodi
that's so great that Sydney did well!!!! What I have found from Parker is that he does breath through his nose and mouth while the trach is out but sometimes you can see the stoma open and close too. I think it's a bit of both.

That really is great and shows great progress!!!!

I can also tell you that VCP as you know is so tricky. Parker has had 2 trial attempts at decannulation and has had his trach out for 3 hours (when he pulled it and we couldn't insert it again a couple of weeks ago) and he does great. They just told us the 23rd of April that his cords are "barely" moving. They attribute his progress to the reduction of swelling of his aryetnoids. I didn't realize this but we get vocalization from arytenoids.

Awake time Parker does great with the trach out, asleep well that's where the controversy begins. Remember that the cords control vocalization, breathing and swallowing. I believe that over a long period of time...days or weeks....that's where the trouble could possibly begin for him from being so worn out from working so hard to do those 3 things.

My new way of thinking of P's trach and his VCP is that the trach is needed for long term quality of life. The short term I believe he could make it and do great!!!

Good luck tomorrow and in your upcoming scope!!!! I would talk with your doc's tomorrow about what happen, I think as much info. as you can give them...well it helps with decision making.
sorry to write a book!! LOL

P's MOM

[trach mom]

My daughter used to panic when the doctor capped her and that is why he has not decannulated her. She may be decanned in a little over 2 weeks. So, I decided to try to take her trach out and "test" her since he will not. She did fine. Her stoma kinda closed up, but I think she was breathing through her mouth. I heard noise coming out the mouth. That is how I can tell. I don't know if you can hear air through the nose, so I don't know if she was breathing through it or not. There is probably a little air getting through the stoma, too.