If It Weren't For Bad Luck, She Wouldn't Have Any At All

I'm a 40 year old woman that has had roughly 15 surgeries/procedures/hospitalizations.  My daughter is 10 and she's already had half that.  I can understand why Chuck Norris is one of her heroes!!!  A friend of ours that recently passed bought Emily a wall poster of Chuck Norris and she LOVED it.  With her unusual language, it was always funny to hear her say "Walkuh Texas Ranguh". 

I've already written about Emily's broken leg at 6 months, heart surgery at 3 years old and frenulectomy in Preschool.  That's more than some people go through in a lifetime.  Of course not MY little girl! 

I first need to let you know a bit about our neighborhood.  It's filled with boys.  There are just a couple of girls Emmy gets to play with occasionally but for the most part, she's surrounded by stinky, sweaty, gross boys (that I absolutely love and adore by the way!).  To say that she's tough is an understatement.  She really didn't have a choice, she had to be.

John Thomas, Emily, Tyson, Harrison, Joshua, Ethan

Tyson, Harrison, Joshua, Ethan & Emily (she can't really go topless like the boys!!!)

I can't remember what grade it was, maybe Kindergarten.  She tried to catch our neighbor John Thomas when he jumped off the ladder of the pool.  She ended up with a scar under her eye and a puffed up cheek.

In 2nd grade, she was jumping on the trampoline with the boys and she fell out of the enclosure.  Broken arm. I think she was more upset about the doctors cutting off her favorite shirt than anything else.  (She still hasn't let that one die.)

Flowers from her special friend, Tyson

Then there was the time Ethan accidentally hit her in the head with a bat.....

Since Emily's surgery in 2007, we have traveled back to her pediatric cardiologist every year to have a check up.  Our wonderful friends, Tommy & Linda Cherry, were kind enough to let us stay in their gorgeous home so we wouldn't have to stay in a hotel.  (Thanks, you guys!!!)
For the last few years, we noticed the pressure gradient in her heart continue to rise.  It was in the 30s then the 40s.  We were told that if it reached the 50s, we would have to consider doing something, we just weren't sure what at the time.  At her 2012 checkup, her doctor expressed a concern about the continuous rise so he suggested we try a heart catheterization.  We scheduled it during Spring Break of 2013.  Lordy, she was a TRIP!  Versed, again.

 
Unfortunately, the heart cath didn't provide the results we anticipated.  The very small percentage of possibility that the subaortic tissue would grow back wasn't in our favor.  The tissue was back, along with the other obstruction which meant another open heart surgery.  (My throat just tightened rethinking all of this.)
By this time, Josh had already began working in California. He was about to finish up his 3 month contract.  Finally, our marriage was strong!  It's like we finally gave in to each other and were able to love each other the way we should!  Dare I say.....we were happy!!!
Earlier in the year, we booked our flights to see him in California so we kept that booked and scheduled her surgery for his return in July.  This was the first time the kids had been on an airplane and they were SO excited!  It was an AMAZING time out west.  We spent time in San Jose, San Francisco and Gilroy.  We celebrated Josh's birthday with a day at the theme park, California's Great America.    We hiked through Muir Woods which is full of redwoods.  I wasn't especially excited about visiting Alcatraz.....until I got there.  I absolutely love mobster stories so seeing Al Capone's cell along with many others was awesome!   Pictures could never ever capture the magnificence of the trip. 

While we were on our trip, I got a call that Emily had been chosen for the All-Star softball team!  Luckily the season was scheduled to be over before her surgery date so she was able to come home and jump right into that!

It came time for surgery.   At 3, Emily wasn't really aware of the significance of having open heart surgery.  Age 9 is a different story.  She only expressed a small amount of nervousness, which helped me keep calm too!!  We had a lot of hands to hold us up during surgery.  Dena, Josh's parents, our friends Keith & Hope Sewell not to mention the hundreds of people lifting us up in prayer. Our friend Maggie let Ethan stay with her family the week we were gone.  There are some things that are impossible to repay. 

Brave girl heading into surgery

We arrived at the hospital at 530am.  Full House was on so she zoned out watching that for a while.  By 8:45am she was prepping for the OR.  Surgery started at 9:49am.  At 11:14am she was put on the by-pass machine.  At 12:39pm she was off by-pass and doing well.  At 1:04pm we were called to a conference room to meet with the surgeon.  He finally came in at 1:35pm.  That seemed like the longest wait of my life.  He was pleased with the surgery.  The tissue had definitely grown back so it was removed.  Her aortic valve is deformed and she'll have to have a replacement but that's nothing they want to deal with until she's older.
At 6:30pm, she was settled into ICU.  The ICU rooms at Children's allow for the parents to stay in the room (bed, chair, Xbox etc).  She started vomiting and we couldn't get it to stop. 8:00pm and she was still vomiting.  She was able to stay well long enough to FaceTime with the boys back home (Joshua, Tyson & Harrison) as well as Mrs. Amanda, Trigger & Chipper.  Just a few hours after surgery and she's acting like normal.
11:00am the next day (Wednesday) she was moved to a room.  She got the biggest and most painful chest tube out.  They didn't give her pain meds before taking it out so that one hurt pretty bad.  They took out her art line and catheter.  She talked to some more special people: Cole, Aunt Whitey, Ethan and our neighbor Emily.
On Thursday morning she got 2 more chest tubes out.  Josh and I also gave her a bath, washed her hair and brushed her teeth.  She went on a long walk afterwards!!  Thursday afternoon they removed her final chest tube.  The surgeon spoke to us again about the surgery.  The subaortic ridge removal accomplished what they wanted it to however there's still minimal leakage and moderate blockage.  Definitely something we have to keep our eye on.
By late afternoon on Thursday, she was BORED!  She and Josh walked around all day.  I found them on the 9th floor playroom playing the Wii.  She was discharged Friday afternoon and has been going full blast ever since.  

Immediately after surgery

Some came in to visit with her as soon as she came out of surgery.  Several had to leave.  At this point, all of her pain meds from surgery were gone and she was dealing with full on pain.  It hurt, a lot.  She had an IV in her neck, her arms, a catheter, 4 chest tubes and the incision where they cracked her chest.  Look at Josh and Poppy in this picture.  If it were you or me, we'd be screaming for some pain meds.  They're SMILING at her which they wouldn't be doing if she was screaming about how bad it hurt.  My girl is TOUGH!  I saw her cry twice the whole time, that was it! The day after surgery, she was up walking around to the playroom and also downstairs to a duct tape craft class.  She loved to read to the younger kids on her hall. 

Riding the tricycle......TWO DAYS after surgery.

 On the day she left the hospital, many members of the Alabama football team were volunteering to make bracelets and necklaces for the rollout of the new Bravery Bead program.  Emily and #77 Arie Kouandjio made a bracelet together that I still wear every day.  

With the Bravery Bead program, patients earn a bead for every visit, procedure, surgery, test....whatever they have done they earn a bead.  This is Emily's collection of beads encompassing just 6 years.

At her checkup a couple of weeks after surgery, we were told her pressure gradient was at 35 (it was 30 at the time of surgery).  The ultimate goal is to be at ZERO.   We still have to watch it but he's happy to lay low for a little while.
That brings us up to speed on Emily's broken heart situation.  For now, we will continue to visit her doctor in Birmingham and pray this tissue doesn't grow back AGAIN.  Our next visit is scheduled for September 2014.  Of course, we would love to have a miracle healing so she doesn't have to go through any more surgeries.  We know it's possible but we also know we're ready to fight.


By the way, I've come to the point I was worried I would come to.  I've told the story from beginning to end.  I can go back and elaborate on some stories.  Readership is down a bit so I must have hit my peak.  *lol*  I'll post one blog per week and one recipe per week.