taboo subject

[trach mom]

I have a question. I have read on previous posts about some parents taking their little one's trach out during changes and leaving it out for a short period of time. I would like to know for how long? We did it on Saturday for approx. 1 1/2 minutes. She seemed to panic at first and then she was just fine. (Don't worry, we had all emergency supplies at hand) The reason I am wondering is that she is going to Birmingham for possible decan in 3 weeks. They are saying we have to keep her plugged 24/7 before they will take it out but I don't understand why they can't just "test" her.

[p's mom]

I can tell you only from my experience and experiences. During a trach change our nurse noticed that Parker did well for brief times and it was also during this time that he started pulling his trach out on his own. In the beginning it would only be out for very short periods of time. (a minute or two). I'd watch him and see how he did and we both gained strength (Parker and myself) to want to try to see how he'd do for longer periods of time.
I got brave and would let it stay out for a little while and then longer and a little longer. I wouldn't recommend taking it out for longer than about 15 minutes. I also think it depends on your childs diagnosis. Parker has NEVER had any "code episodes", or apnea or bronch spasms. So we felt comfortable trying. He also has an upper airway, it just stinks. What I mean is that he can survive with out a trach..he's not dependant on it for complete survival. (short term) It's the long term exhaustion from his cords, and the way he has to breath with them not working properly that causes his need for a trach. I would always recommend you have everything you need "just in case of an emergency".
Ultimately I believe we know our children best and I can understand why you would want to see and try before you go for your dr. visit soon.

Cory
P's MOM

[p's mom]

One thing I forgot to say is that I would watch your child and their reaction while the trach is out. If there is a struggle or panic I would definately Not try it any longer. The child has to be ready..and you are the best judge.

P's MOM

[Michael's mom]

That is so exciting! Good luck on the decan in 3 weeks! Personally, when the pulm is ready to go forward on something, like extend the time off the nose, or lower the vent pressures, we usually do little "sprints" on our own just so he will be successful when it's done with the pulm. Our nurses fuss and the pulm fusses when they find out, but we never risk his life or oxygenation. He always has good sats when we do things like this or we stop immediately. As parents, we just need something hopeful - something to look forward to, so we can have the strength to face the day. Good luck, Sue

[trach mom]

Thanks for replying. So far I have only done this twice. She did not panic, which I attribute to being used to the passymuir valve. She only has one problem, her hemangioma, which has been removed, so we don't feel too worried about her coding. She never has (Thank God). I want to try to do it for a little bit each day before we go back, so she will get used to it. She panics when they plug her and that has a lot to do with why they haven't decannulated yet.

[cariaad]

Try not to let the dr make plugging a must before decanulation. Our s understands that Alli's airway is small and she realy has to work hard to breathe around the tube when it's plugged. She does great with the trach completely removed, and we see him again this Fri to try to plan decanulation. Deb
ps It was his idea to start practicing withoput the trach in after I told him she was wriggling away to go play during trach changes! We tried it in his office first, then at home with a pulseox until we were satisfied it wasnt effecting her sats.

[p's mom]

You know I was thinking about when we do it with Parker and I thought maybe this might work for you. After we give Parker a bath and it's time to change his trach ties...He pulls out the trach himself and then talks to me while I wipe off the trach and put new ties on. He stands on his changing table and we talk and sing and point at the "Bob the Builder" pictures in his room and dress him and the last thing I do is put the trach in.

Just a suggestion..It's worked great for us.
P's MOM