Put up Yer Dukes

Maggie's new school picture came out pretty good. If you look closely, you can see her teacher’s arm behind her, holding her up. She looks so grown up. She looks so sweet. She is not.

Maggie has a terrible habit of pulling on her tracheostomy tube (trach). She is dependent on that trach to breathe, so we have to get her to break this habit. Unfortunately, Maggie has learned that doing this will get her the attention she wants. Even if it is negative attention. Generally, this behavior is reserved for me. She doesn’t really do it when the nurses are with her but as soon as I come into the room she will start. She knows that I have to grab her hand and get in her face. She finds that hilarious. She is manipulative and we all know it, but we do her bidding anyway.

We cannot ignore it because if she pulls the thing out, which she has done often, she has just a couple of minutes before she is in respiratory trouble. When it comes out, I have to work quickly to replace it. I have become quite expert at it. I can have the thing changed in about 30 seconds. Once it is in she’s safe, but then it has to be secured. That is a little more difficult, generally I can do that in about a minute, but sometimes I need another set of hands so I can thread things.

Lately Maggie has started this behavior even when I’m not home. I am sure the thing bugs her and once she starts playing with it, it is like a compulsion. Because of this, and all the complexities of her care, Maggie needs more than one person to be with her all the time. Or at least more than one person in the house. It’s a drag at times that we cannot have more freedom, but that’s just the way it is. A couple of afternoons I have a helper come in to work with the nurse so I can be free. I may have to start doing that all the time.

Last night Steve and I had to go out. Together. At the same time. The nurse was alone. We took care of all the scheduled procedures before I left so Maggie cold just hang out and use her communication device, the Dynavox, while we were gone. We were only going to be gone a couple of hours. I set it the Dynavox and we took off. Because we were going to a funeral service, the nurse knew not to call us for anything other than an emergency.

For some reason the Dynavox would not work. Of course, I was out the door before this became apparent. Maggie was in her chair. Mom was gone. Dad was gone. The dynavox was not going to distract her. The nurse was there – and she is EASY to torment. So let’s start pulling on the trach. The nurse was exasperated, but she kept her cool.

When we came home, Maggie was wearing these “gloves” on both hands. The gloves were provided during a hospitalization to keep her from pulling on tubes when she was younger. The look like boxing gloves. The fingers are behind netting on one side and have a large padding on the other. Because she is so clever and can pull them off, they were taped into place. Maggie can still use her hands, but cannot isolate her finger to flick out the trach.

She looked like Muhammad Ali. I walked into her room and she waved a gloved hand at me. I said, “Well it look like someone was not behaving.” Maggie grinned mischievously and the nurse rolled her eyes. Steve walked in and just said “uh-oh” and Maggie went into full laugh mode.

It’s dangerous. It’s aggravating. It’s problematic. Nevertheless, when she gets what she wants – attention – and starts laughing, it’s very hard to keep a straight face.

Maybe she should be a boxer for Halloween.