Tuesday, February 22, 2011

Day 8 - Truly Amazing Day!

Day 8 - A song to match your mood
Phoebe's choice was:  "Eye of the Tiger"


Hello! This is Amy, Phoebe's momma.  I know Phoebe had wanted me to post updates during the surgery, but I couldn't take my attention away from waiting...in a waiting room full of family who were also waiting.  Wait seems to be the order of the day.  Luckily, we didn't have to wait as long as we thought.  Why were we expecting the longish wait time?  You should have heard one of her surgeons during a consult...  

In prior consultations with Phoebe's surgeons they had discussed her upcoming surgery as a "rock fight from the start",  "I can't tell you how successful we are going to be", "I wish I could give you some odds, but we really just won't know anything until we are there", as well as "we booked a long time for this surgery".  We weren't bowled over by their confidence, but we knew that they were the "prepare for the worst and hope for the best" types.  For the last few months I haven't been able to get my attention off of the upcoming surgery and how significant an event it would be.  What a crescendo of anticipation!  This would be a death sentence or an opportunity at a new life with new lungs (to be listed for a double lung transplant).

There has always been one thing I could count on, no matter what, and that is Phoebe.  She has this will that forces the universe to simply obey.  She has overcome the odds so many times she would have outlived a cat times twenty.  She is the strongest willed person I know. Examples:  Day before yesterday she said that she would enjoy some fresh cut flowers in her room.  That night her cousin Jena came to visit with an elaborate bouquet of exotic blooms.  Today during surgery a lovely bouquet of pink tulips arrived from a dear family friend wishing her luck! Now, I realize these aren't dramatic life changing events.  We've had those too, such as the time the docs were hugging me because they thought Phoebe was going to bleed to death from a burst blood vessel in her lung and her only chance of survival was to stop the bleeding on her own, or the time she told me that what she wanted to do about her extremely rare bacterial infection was to get rid of it and give her docs the finger for giving a less than optimistic prognosis of 6-12 months (NAILED IT!).  I could go on, but this girl has been living against all odds from the very start.  I'm surprised she hasn't cured herself of CF, but maybe she still has a few aces up her sleeve.

Today was the biggest challenge yet.  Not only did a brittle and tired old catheter/port have to be removed without breaking apart and dispersing into her bloodstream, there was a huge clot and a completely occluded and damaged SVC that needed to be repaired and then stented.  Neither of these two things were easy fixes. There were potential pitfalls and worse case scenario possibilities galore.  

It took a few hours and then casual as can be, the surgeon steps out of the OR to let us know that "Phoebe is doing well.  The surgery was a success." and that he's "really glad it all worked out, it was really cool."  I was stunned.  I asked him what the down-side was.  He said "Nothing...it's all good."  I asked him about being listed for transplant.  He said "We did everything they asked for."  Easy breezy, lemon squeezy.  And that's how our story ends.  Just the way Phoebe said it would end.  I'm wondering why I was worried in the first place.

Why worry?

I don't know about you, but I am a big Phoebe fan.  HUGE.

L,
Amy

P.S.
A sincere and heartfelt THANK YOU to Phoebe's surgeons, who may not know it, but they saved a life and many hearts today.  And lots of LOVE to EVERYBODY who was out there sending Phoebe prayers, positive thought, light, love, etc.! 

4 comments:

Unknown said...

Auntie, that was beautifully written. If only everyone had such will to live and not just be alive.

Phoebe is an inspiration, a constant reminder of courage, hope and strength. So glad to hear it went well and "was cool." :)

Love you guys,
Jen

MissMaxMisadventures said...

Phoebe shows that the strength of her spirit can be stronger than the the strength of her body. We are all here to "fight the good fight" and she does it with pluck and attitude, grace and laughter and last but not least, with her loved ones besides her all the way.

I love you, Phee!

Auntie Max

Diane Rosa said...

I was thinking of all of you all day yesterday and I am so happy to hear the great news. What a girl!!!

Kerry said...

So relieved this stretch of the journey is behind. So proud of Phoebe, and you, Amy, for weathering the many storms. Can't wait for those new lungs!!!