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Take a Deep Breath

Posted May 14 2009 12:00am
When Maggie came home from school yesterday, she was happy and rambunctious. Her breathing sounded thready and loud, though. The nurse and I agreed it was time to change the trach tube. Maggie was very cooperative throughout the procedure.
Changing the tube is easy. Tying it is difficult, especially for a left-handed mom with dexterity issues. The small flanges on the side of the trach have to be threaded with the ties which are then doubled around the back of her neck, threaded through the other side and tied tightly enough to keep the trach in place, but not so tight that Maggie’s neck is constrained. Then it has to be knotted over and over and over again because Maggie did not inherit my dexterity issues. Considering she has cerebral palsy, her ability to undo knots, zippers, buttons etc is unbelievable.
For a planned trach change like yesterdays, we get everything ready ahead of time to make it easier. The trach is threaded on one side ahead of time so things go quickly. That way I can hold the trach in place with one finger while I pull the ties around and thread it through the other side. In an emergency change, because of blockage or breakage, it is a bit more difficult. You have to move fast and just have to get the new one in immediately. Trying to secure it is very difficult because you need three hands, one to hold it in place and two more to thread the thing. The emergency likely means Maggie is thrashing around or crying, which adds to the challenge. They do make Velcro ties that are 1000 times easier, but those will not work for Maggie. She LOVES ripping Velcro and we would be in an emergency situation every two minutes.
The trach is changed at least once a week, and really more like every 5 days. That seems to be the period of time she can go without sounding like a Mack truck when she breathes. The nurses are not licensed to do the trach changes (though they can in an emergency) so that means I have done this probably 200 times in the past two years. I am good at it, but it still gets my heart rate up.
That trach change lasted about 12 hours. I heard the nurse yelling for me at 5:00AM and came running downstairs. The new trach broke, the tie pulled through flange, and she was holding it in place. Because she was there holding it I could prepare the new new one and start the procedure all over again. Heart rate goes just a little faster when you are pulled out of a dead sleep.
Now it is 6:02AM and I have read my email, checked facebook and written my blog. The coffee is ready but somehow, I am not interested in that first jolt of caffeine yet. I feel like I have already had 10. What I need to do is take a deep breath – and be glad I can do that without plastic and ties in my neck.
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