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Wednesday, April 28, 2010

Bye Bye Trach

Decannulation done.  Trach out as of 4pm on April 26th.  Hello Kitty is protecting the stoma which will take about 3-5 months to close, unless ENT stitches it shut first which is what I am hoping for.  We see him tomorrow morning.  Feel like a ton has been lifted off of us – and Megan looks so much better.  Swallowing everything is a bit of a challenge and so is clearing the stuff in her chest, but I think she is doing okay .  Really nice to hold her without something getting in the way.  Tomorrow is Pat and my anniversary and i cant think of a better present.  


Wednesday, April 7, 2010

Today I got the call with the date for the bronchoscopy and the "tentative" trach removal. Monday, April 26th. It is exciting and scary all at the same time - if they take it out and she does great we come home in 24 hours with no trach. If they take it out and she isnt managing they will put it right back in. She is sedated for the bronchoscopy so if the airway looks good they pull it out then and leave it out. I am afraid she will be too sedated to switch over to mouth/nose breathing - too unaware. The other scenario is that we come home and then she starts to get into trouble. That is the worst scenario because then Pat and I have two options - let them reintubate and then re-trach or not put her through the trauma at all and let things happen naturally - whatever the outcome. I dont want Megan to suffer any more trauma naturally but then there is that selfish side of me that just wants to hang on. I am really positive about it but I have to be realistic. Nothing is guaranteed and there is no way to know for sure until it is out. The tests we have and are doing point us in the direction but that is all that they can do. It is a risk. Without risk there is no reward though - that is how everything in life is it seems............

Tuesday, April 6, 2010

When you come to the edge of all the light you know, and you are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on, or you will be taught how to fly.

Sometimes I fall a long way before I learn how to fly........


Finally got a call this morning that Megan passed her sleep study. That is the greatest news I have gotten in a year!!!! And the Dr. was certain she would not pass it. He also said she would probably be ventilator dependant for the rest of her life!! Next step is we go in for a bronchoscopy to make sure her airway is good and if so the trach comes out on the spot and we see how she does. I am so excited I cant stand it. Ryan asked if that meant if she was going to be able to eat baby food again and if we could throw away the suction machine! YES AND YES. With a little work - nothing we cant handle.