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.  

July of 98- Wow!

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............

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........

Success!!!

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.

Lots of stuff happened in the past week.  James got his braces on today. Should be about 18 months to a perfect smile.  He still looks cute.  Braces are not what they used to be.  Megan had her sleep study last Thursday night to look at decannulating the trach.  Dont have the results from the Dr. yet officially, but I think the data they got was in her favor.  I hope it was in her favor.  She was very mad about the entire thing – she knew she was in the hospital for sure!  I spent the entire night standing at the side of the crib she was in so she would not scream and they could record some sleep material.  It was a night to remember!

New hair cut – mixed feelings about this.  Pat is very upset that I cut her hair.  It will be so much more comfy for her.

My fairy princess

Could not resist – she was sleeping so I had to sneak in the fairy wings and the wand – I could never get this if she was awake!

 

 

Get Fit Tri

Today was the Get Fit Tri – Lance Armstrong Live Strong Youth Tri Series.  It was the second annual and the benefactors were once again Megan and this year Clouds of Hope was included.  Clouds of Hope is the NFP my friend Renee created (she is also fighting a battle for her youngest daughter) that is working on getting the all inclusive park built here for all children to play – differently abled ones too.  Megan was in the calendar that her daughter was in last year also for the park.  Beautiful day today.  Girl Scouts did an over the top job again and worked their little  butts off – their Mommy’s too.  Sponsorships to get this thing to happen were harder to come by this year too which made it even more challenging.  James participated again – Ryan says if it happens next year he will do it too, and so will Daddy.  Brenda Golterman, Beth McCullough, Carole Dale – women I respect and admire.  They are teaching their girls right. No doubt about it.  We are blessed to have people like this i our corner.