Avery's Family

Avery's Family

Tuesday, March 5, 2013

Put your foot down and you might get somewhere!

The last couple weeks have been a blur. Our family was sick with strep, Jeremy graduated from MDOC(Michigan Department of Corrections) Madi  finished Basketball and will start Track next week, Gage is finishing up his basketball and will start baseball with Titan in a couple weeks and I have been trying to get caught up with my classes, since being sick put me back. With all that I have been trying to get some answers from DR.'s about Avery. I requested a second opinion from another Pediatric ENT in the same childrens hospital where Avery goes. They informed me that they would have to let her primary ENT know that I was requesting to see someone else. At first I wasn't sure if I wanted to do that (didn't want to step on anyones toes) but then figured I wouldn't be happy until I did. I like her primary ENT, he just wouldn't answer my questions. A week later I get a phone call from her primary ENT asking me if he had done something wrong. He wanted to know why I wanted a second opinion. I told him that I want to make sure I'm looking at all my options for Avery. He all of a sudden was very interested in what I had to say. He answered all my questions and we now have a plan for Avery being decannulated. He wants Avery to be weaned off her vent first. I'm guessing this will take about a month. Then he wants to wait 2-3 months to give her lungs a chance to get used to breathing at night without her ventilator. He will then remove the scar tissue that builds up in her trachea from the trach and do another sleep study to see if this helps with the obstructive apnea, if it does great!! If not then they will fit her for a cpap nasal mask and decannulate. I am relieved to have a plan in place and light at the end of the tunnel.

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