Doesn't want to get her trach out...

[kharmasmama]

Kharma is older now, and we've been talking to her about getting her trach out. We've tried highlighting all of the fun things we'll be able to do - go camping, fishing, swimming, skiing, you get the picture. She used to be on board and was excited, but in the last two or three months she's decided that she likes her trach. In some ways I'm glad that she is so ok with it. She's never been ashamed or shy around other kids, and she'll tell anyone and everyone what her trach is and why she needs it. I'm happy that she's so secure in herself but how do you convince a kid to take her trach out when she's proud of it?

Also, her ENT wants to do an in-office scope which we've never done before. She has to cooperate for the scope to happen, and so far we've tried and failed twice. He wants to get a look at her vocal cord activity while she's awake so he can determine the next course of action. Anyone have a cooperative kid at 4 years old? How realistic is this?

[Cillian's Mom]

First, i think it is great that she is comfortable with her trach. I imagine, even at 4 though, that she might be frightened by the prospect of the trach coming out. It's been a part of her for so long, it might feel like losing a body part which would be scary. I don't have much advice about explaining this to her, but maybe ENT has someone on staff that counsels younger children when its time for the trach to come out? I don't know since we are not at that point yet. We have done many in office scopes, as a matter of fact, it is routine with our ENT to do one at every regular office visit in between sedated bronchs and scopes. What we do is sit Cillian on my lap, give him a toy or book and then the doctor quickly does the scope. He hasn't had any issues but all kids are different when it comes to what procedures they will and will not tolerate. Cillian has to be sedated for them to take his blood I hope everything goes well, keep us updated.

[tbhartman]

Our hospital has a little tale about the trach fairy, who gives the trach to little boys and girls who need them... maybe something fun.. there are a few groups who use trachs to put in teddy bears and stuffed animals... Does she have one of those? Maybe she can "decan" her stuffy, or on the other side, do surgery to give her animal her trach to watch for her... a few ideas...

[Sweet Harrison's mommy]

I love the trach fairy idea! And I love that she is so proud of her trach...makes me happy to hear knowing that Harrison will be 2 in a few months. I hope that he is proud of his when he is old enough to understand, too

My first thought is that all kids have attachment issues. I know it's quite different with a trach, but kids get attached to toys, pacifiers, people, clothes, places, and any number of objects. With pacifiers, for example, I know the "pacifier fairy" works well for lots of people in ridding their toddlers of them. Also, what if you start talking about her "special day" and plan things that she can do on the day that the trach comes out...something that could be tangible and attainable for that day. Go to the toy store and pick out a toy, then go to her favorite restaurant, chuck e cheese, etc. Whatever she loves to do in your town, plan a whole day of things for her. She is 4, so she understands quite a bit, so maybe you can make a time-line or list for her of what the days activities will entail to make it more "real" for her.

ok..no personal advice, but those are just some random thoughts

[Ainsley's Mom]

I've heard parents say that their child had anxiety about losing the trach. Change is often hard for kids (and adults).

I think it's a good idea to talk about the scope ahead of time. Maybe even show her one on video. Explain that she needs to hold still. And then bring something to distract. I've used lift the flap books and search and find books. I would try a video on an IPad or IPhone. Ainsley is very difficult to reason with and it's always been very difficult to get a good view during a nasoendoscopy. Even so the doctor is usually able to use the video footage to rewind and review even the shortest glimpses of footage. I hope she cooperates so you get the best view possible. Good luck! I hope you get good news and she adjust to the idea of being trach-free.

[Shauna]

I remember someone online talking about her DD's anxiety about getting her g-tube out. When they got to the bottom of the anxiety, it turned out that the little girl felt she wouldn't be special anymore. She got so much attention because of the tube and everyone told her what a special little girl she was, so losing the tube was losing her "specialness".

So it could be something like that also. Anyway, I think you'll figure out how to help her work through her feelings. She'll eventually be ok with it, I'm sure.

[jennymclelland]

Last time we were at the McDonald House, another mom told us about how her son pitched a fit when he got his mickey button out.. He was a transplant kid, and he only needed it to keep weight on during the procedure. He was 4 or so. He hadn't used the g-tube in months, but it was part of him and he wanted to keep it.

She washed it and let him carry it around for a few weeks, then he got bored of it. He liked to show people the scar, and then show them the plastic thing and explain that it used to be there. 4 year olds are pretty smart.

This is just a brainstorm, but what about a special new doll who needs the trach when she gets the trach out? That will give you a story to talk about before the decannulation, and then she can get the new doll and you can put the trach in the new doll at the hospital. Then the trach can still be a part of her life, because the doll will have it. I've got an American Girl catalog sitting in the mail pile, thats what gave me the idea. I think those doll's necks are too skinny tough.

James does lots of awake scopes. The ENT actually says its better, because crying/hollering/complaining really makes the vocal chords work. It might take a little more effort to restrain a squirmy 4 year old though. I put James in a reverse headlock with one arm (hyperextending the neck slightly) and hook the other arm around his chest. You might need another person to hold a 4 year old's legs, but thats the kind of job residents should get stuck with.

[blessedwithtwins]

My daughter was decannulated last October, after having the trach for almost 7 years, which was all her life. She was very anxious about it, even though we spent months preparing her for that. When the moment came she was not going to let anyone touch that trach. What worked for us was explaining to her that the trach was always going to be part of our lives and that now it was just going to be in a different place, out of her. I got a beautiful box with nice designs and I told her that we were going to save the trach in the box and we were going to find a special place for it at home, so that she could be close to it and look at it anytime. This worked and for the first few months she had the box with her often, lifting the lid and making sure that the trach was there. Now she doesn't look at it or look for it anymore and she doesn't miss the trach at all.

I hope this helps,

Silvia