nanakwz, questions about trach
MummyGruetzie
member
Thanks for offering to answer questions!
In general, I'm anxious to know any information you want to share. We found out on Monday from our doctor who is out of state and won't see them in person again until right before the surgery. I can call and ask questions, but I'd like to have a general feel for it ahead of doing that.
*How often do you clean/change the trach? Do you do it yourself?
*Are you required to have a nurse because of it? (I read that this was a requirement in some cases on a website, but am unsure how true that really is). We currently qualify for 16 hour/7 day week nursing. I'd rather not have to use it, though.
*I read somewhere that you can't have shirts that button up the back. Is this true? (I'm in the process of making clothes that fit over, around, and in between a halo. This would be super helpful to know ahead of time, since most of what I've been working on closes in the back).
*How long has your son had his? Does he have a speaking valve? Is he able to make any sound at all?
Your little guy is really sweet. Thanks so much for your help! 
Re: nanakwz, questions about trach
Happy to help! I don't know what I would've done without the help of other moms!
We clean around the trach constantly (Drake has a lot of secretions) but we only change it once a week. It is recommended that you change the ties whenever they are soiled but we would be changing them all day! You may need to do the ties a few times a week. We have done trach changes since the NICU would let us but it still takes 2 of us.
Nursing shouldn't be required but if you can get it, I recommend that you take it!
We qualified for it but couldn't find any nurses in our area that take care of infants. They make so much more in the hospitals. I have heard lots of stories of people having to go through several nurses before finding a good fit so don't be disappointed if it takes a while. You will probably become pretty comfortable doing things yourself after a while but take whatever help you can get at first.
As for clothing, we use just about anything. We have some t-shirts that have a couple of buttons on the back and we just turn them around but we have mostly crew-neck t-shirts. Shirts that button down the front are the best but I don't know how that would work with the halo. You might also want to look into the Tilson Guard https://www.tracheostomy.com/resources/more/guard.htm. (it's the blue cage-looking thing in the picture) It makes it very difficult to cover the trach. We used them for a very long time and they really help!
Drake got his trach when he was almost 2 months old and he turned 3 a few months ago. His issue is more with swallowing now and needing suction. He started making sounds about a year and a half ago and now he talks without even covering the trach. We do have a speaking valve and use it when he will let us. He doesn't need it for speaking but it also helps with swallowing. Our ENT didn't let us get one until Drake's airway became more stable so you may need to wait a while before trying it.
I hope that wasn't too overwhelming! I tend to write novels on this stuff when people ask questions.
If you come up with anything else, let me know!
Hey DS also has a Trach. I have the nursing and TRUST ME you should get a few hours of it. They are so great with DS and I really like them they help me out alot on remembering when to call doctors and which appt is which. Also there are those times where I need to make a quick run just to get one thing but can't because I don't have anyone to stay with him or anyone to help me bring him and all his bags down to the car.
As for the Trach cares we're supposed to do them twice a day but once is pretty good. The ties I was told change them everyday and clean around his neck. He's 4 months so he drouls and get it everywhere and they end up smelling. Trach change is once a week unless there's an emergency(which we haven't had any and God forbid we ever do) I do cares by myself every weekend(nurse does them while their here) As for the trach ties and trach changes it's a 2 people job.
He got his Trach when he was a week old and he is now 4 months. Due to having a very small jaw and tongue. He also has a G-tube(feeding tube) We don't have a speaking valve I never even knew about one until a few weeks ago. I don't here anything from him unless he's crying really hard I can here him squeal a little bit. Hopefully he will be getting decannulated soon! Probably within a year or two. His jaw and tongue have been growing on it's own. We just have to work on swallowing now.
This was very overwhelming for me since i'm a single teen mom. But with the support of everyone in my family DS and I are doing great. I got used to the Trach and I feel as though I'm a pro at this now. If you have any questions you can also feel free to PM I'm mostly over on the 3-6 and single parents boards if you need/want to find me. I don't come here too often since I don't really know about anything else but trachs and g-tubes.
Thanks so much for your replies! The initial shock has worn off and I've researched pretty much every angle of it at this point so I'm beginning to feel more prepared. I do think we're going to set nursing up, though. Thank you for helping me to realize that it is okay to accept it. Jeremiah, you brought up a huge point--just the carrying bags to go out. DD has a g-tube, will be wearing a halo, and will have a suction, etc. It really is just out of the question to try to do that all out in public by myself. . . especially with my other toddler.
One more question I do have is for recommendations on being safe during Winter. I read that the trach can't be exposed in the cold, since the cold air would go directly in the lungs. In other places, I've read that it can't be covered. Is it okay to cover it with a breathable jacket/scarf?
Thanks again!