Who removes trach at home?

[Jodi (Sydney's Mom)]

Okay, I have seen a few posts on the old board which talk about removing a trach and I am very curious...hoping that those of you who do this will elaborate a bit.

Has your doctor told you to do this or are you doing it without his knowlege? Â*How long do you leave the trach out? Â*How long before worrying about the stoma closing? Â*Is it hard to get back in after being out? Â*Does the child like not having it? Â*etc, etc, etc...

So many questions, I would love to hear from you who do this as this is the first time I ever heard of such a thing! Â*

My daughter has VCP and when we change her trach, she seems to have a hard time breathing thru her stoma while the trach is out. Â*Now, that might be because we hold her chin up and head back and hold her still while it's out, but when I heard of others taking the trach out, I wondered if I didn't hold her head back and just let go if she'd breathe okay thru her nose and mouth instead of struggling to breathe thru the stoma. Â*Any ideas?

Jodi

[cariaad]

Hi! Alli is 18 months and was dx with subglottic stenosis from the long intubation in NICU. She pulled the tube out almost daily for most of her stay (123 days intubated) and thus caused a lot of scarring on the vocal cords. So, she couldn't maintain her airway. When she finally reached 4 lbs (the surgeon wanted to wait that long for safety) we tried the cricoid split surgery to open up the airway, but it wasn't adequated and she had to be trached so the vocal cords could heal and her airway could grow. NOW...the ORL is the dr who is giving us trach guidance. He suggested that we start capping some months ago, but we told him that we felt the trach is taking up too much space in her airway and she can't do it for more than a few minutes. So he suggested taking out the trach completely after I told him she had started crawling away in the middle of trach changes and did fine with nothing. He gave her a test in his office (removed the trach and she sat and played for 15 minutes like she didn't even notice it&#33http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif So that is what we are doing. We also got him to order a 2.5 trach but we're having problems with it so aren't using it until we can get back in to see him (on vac this month). She holds her head in a normal position with the trach removed and the stoma closes thru gravity but doesn't grow shut or anything. After 30 minutes or so it (stoma) will start to stay open and she stops breathing thru her nose then because air will follow the path of least resistance so we go ahead at that point and put the trach back in. It was very scary at first but it shows us she can do it when her airway is free of everything so we are looking forward to (fingers crossed) decanulation this Spring. Sorry that's so long! Fell free to email me privately if you want any more sdetails. Deb

[Lily's Mom]

Hi,
We've been leaving Lily's trach out for a few minutes at a time when we do trach changes. I cover her stoma with a piece of gauze and my finger to keep her from breathing through the stoma. She does great; it seems much easier for her (obviously) than trying to breathe around her capped trach. She has Pierre-Robin and needed the trach because her tongue was blocking off her airway. Her jaw has grown a lot and her airway is much more reliable now. She doesn't have any problems with her lungs or trachea as far as we know; if she did I would be much more nervous about taking out her trach. Whether or not you can do this depends totally on why your child needed the trach and if she has outgrown the need for the trach. Otherwise it could be dangerous, so I would ask your doctor about it first.
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Erica (Lily's Mom)

[cbissell]

If you are talking about decannulation, this should be done in a hospital setting. As for taking the tube one for a brake or whatever reason (other than a trach change), not a good idea. The stoma can close up, especially if it's a recent tracheostomy.
More on decannulation at: decannulation (http://www.tracheostomy.com/english/decan.htm)

[cariaad]

I guess that our doctor (ORL Surgeon) doesn't think it's that much of a risk, and since it hasn't happened I'm not going to worry about it unduly. We keep a close eye on her at all times--soo even more so when trach is out. He (dr) says that this is a routine thing to do in the weeks before decanulation. Deb http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

[Heather Trotter]

I must admitt I have never heard of people doing this. My daughter Morgan is 16 months and when she was trached a year ago she was 9/10 collapsing and we were told that when we do trach changes we only have a couple of minutes before she could be in some trouble. It has been a year though like I said but, Morgan has not shown improvement yet. She is still 9/10 collapsing. I would think this would be dangerous. I know though every case is different but, I would think the stoma would start to close up because I heard that when a child is decannulated they just slap a bandage over the stoma or they put one stitch in and let it close. I do know that her ENT doctor did say that he would like to down the road plug her trach and just let her use it for support. Even though decannulation may be a long time away. We go to ENT on the 28th I will have to ask them about this and what the advantages are or arn't on this issue.
Heather