Jul 21, 2014

Decannulated!

Dr. I showed up at 5:00 in his surgical scrubs. We talked for a minute and then he let Ainsley take out the trach. She's done great so far. We haven't yet seen any of the stressors: crying, coughing or exertion. Other than those the biggest concerns are how she will manage with CPAP during sleep and how she'll do during cold and flu season. With time we will see. 

Ainsley with her ENT, Dr. I. 

Ainsley seems to be a bit unsure about this whole thing. I can only imagine how great it will be if this piece of plastic is no longer down in her trachea. We owe her life to it though, and we would be happy to keep it if she needed it.

Ainsley's stoma is deeply set and the Bandaid didn't do anything to keep the stoma closed, and then it fell off on one side anyway. Our ENT says that the usual treatments (gauze with lots of tape) don't generally help or stay put. There is some special treatment to help a dressing stick that we can use if she needs it in order to use the CPAP. It's not as open as it appears here. It is narrowed to a pin prick but inside the hole.

We took her for a walk to the playroom. She didn't get particularly exerted though she did nearly run over the Chairman of Pediatrics. Apparently he's a bigwig. It was kind of cool that he got to see a patient on the day she was decanned after 7+ years with a trach.



Ainsley's Pulmonologist, Dr. D.

She had fun playing and seemed very comfortable with her new naked neck status. 

Ainsley's first meal trach-free. She enjoyed it. 

Then she asked to put her trach back in. A few times. Hopefully that doesn't mean anything other than that it feels weird to be without it after so long...well basically her whole life. 

Now we are watching Toy Story. Then we will go to sleep with CPAP. If that goes well then we'll be coming home in the late morning without the trach. I'll update tomorrow. Thanks for checking in.

3 comments:

  1. The time difference between Washington and Michigan is killing me!!!! I thought about you and Ainsley so often last night. We can't wait to hear how the night went. I can't imagine what she must be feeling!!

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  2. Wow, that's a great news. I loved the picture of Ainsley pulling out her trach tube! Way to go. Congrats :)

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