Apr 28, 2009

Capping Videos

I've been meaning to post a video of Ainsley wearing the cap that we got back in late January. The thing is that how she fares on it is rather inconsistent so I haven't been sure whether to post video of her doing well or struggling, so I decided to post a sampling so people can get an idea of the trials of capping. Occasionally she seems to hardly notice when I put it on and will last for up to an hour, other times she only lasts a few seconds and then there are the times that you get mixed signals, which I happened to catch on video last month. It happened on this day you see it all. I'm hoping my friends from the trach forum will give their impression of how she is doing (clearly she's struggling when she is crying), especially those whose kids did a capping trial before decannulation. Her local ENT would like to see Ainsley work up to wearing this cap most of the day (as tolerated) before attempting decannulation*. Most of the time I don't feel great about her wearing it and I get nervous to leave her alone (within proximity/earshot) with it on for fear she'll decannulate herself trying to pull it off. Please comment and tell me your thoughts about how she is doing on the cap.

(*I also want to point out for family that may get very excited to see this video, that even though she can tolerate a cap for varying lengths of time that is not the same as taking the trach out because her airway can collapse. When we take Ainsley's trach out to replace it with a new one (a routine part of tracheostomy care) she starts to turn dusky blue within about 30 seconds max. The road to decannulation can be bumpy with lots of twists and turns.)

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