10/3/13

Cardio update

We had another visit to Seattle to see Carla's heart docs yesterday, and I am so pleased to report that things are going marvelously!  Her echo took a little longer than what I was used to, so I started to get a little nervous.  But, after speaking to the doctor, it looks great!  Carla in general also looks great!  When they put the pulse oximeter on her finger, the number jumped all the way to 100 and then held strong around 98-99, which is what yours or my oxygen levels would be!  Even after getting her new heart Carla's O2s have always lingered in the low to mid 90s.  So, this was quite a surprise!  Her lungs sound good and the doctor said:  "She looks better than she ever has... and... She is like a different child."  Wow!  This is like music to my ears!  

This journey has been so incredibly difficult and I'll admit that I have suffered with some depression and anxiety through it all.  A person just can't go through what we have gone through and not have it be life changing.  These past 3 years were especially hard.  Plastic Bronchitis came out of left field and took us on a ride that I wouldn't wish on my worst enemy.  Moving to Seattle and having to miss Cody's senior year was heart breaking as well.  And then, after waiting in Seattle for nearly a year, and getting her perfect heart, Carla suffering with PRES syndrome (aka tachrolimus toxicity) was almost more than I could bear... We brought our charming, witty, singing and dancing little snuggle bug in for a new heart and then 12 days later had a child who was hallucinating, couldn't sleep, speak, use her hands or mouth, and had no impulse control. We were told that it should be a temporary problem, but there are no guarantees with the brain!  For all we knew she could have been that way forever!  That was a tremendously difficult time for us.  But thank the Lord, she did get better.  And we were finally released from the hospital and had biweekly blood draws and appointments.  As time wore on everything became less, but the horrors of what she had gone through remained in the forefront of our minds.  

BUT - 

I have always been a firm believer in "Give it time".  Nothing heals a broken heart like time.  And, parenting a child with a broken heart has been heart breaking. 

BUT - 

Carla's heart is no longer broken!  And ours are healing as well.  

Right now I couldn't feel more blessed.  I am so incredibly grateful to our donor family, as none of this would be possible without them.  Carla is almost 11 months post heart transplant, and with every passing month she grows stronger, and bigger!  She has grown about 6 inches in the past year and the school clothes we just got her in August are already looking small!  None of this would be possible without her donor.  

Carla's 1 year biopsy has been scheduled for December 2nd.  November 15th will be her 1 year anniversary.  After the biopsy our trips to Seattle will be fewer, her meds less and her life more "normal".  And with her life being more normal, so can ours. 

Love and blessings!

Jen

Carla with her traveling buddy, Minnie

Having an echo.

Waiting to see Dr. Law

Getting an EKG

Having a little lunch while waiting for the flu shot clinic to re-open

Enjoying a little Ivar's clam chowder before coming home.  

Showing off her flu shot band aid.  
 Blessed.