Big Fat Zero!!!

This is probably the only time in one's life that getting a zero is king.  AnnaSophia's biopsies came back today, and she scored a zero.  Yay!!!!  Why is a zero a good thing you ask?  The biopsies are scored on a scale of 0-5, zero means no rejection and 5 means severe rejection.  AnnaSophia scored a 1 on her last biopsy, which meant that she had mild rejection brewing.  The great thing is that if the rejection is mild enough, it can reverse, and the heart muscle and function can recover. 

AnnaSophia passed this heart cath with flying colors!  She was negative for Ebstein-Barr Virus (EBV) and Cytomeglovirus (CMV).  Her immune suppression levels were right where they needed to be.  Her heart function and vessels looked great, and now I know that her biopsies look perfect.  Everything looks better than I could've imagined.  I feel very blessed to have the assurance that she is doing so well. 

Thank you to everyone who prayed so diligently for her.  I greatly appreciate all of the prayers and concern.  They mean the world to me.

Post Cath Update

I was really sweating this cath.  We've been through them--and worse--before, but I can't help getting nervous.  It had been two years since her last cath.  There are some things that the other tests just don't show, like transplant coronary artery disease for one.  This is the ultimate test.  This is the one that truly reveals how healthy her heart is.

Thankfully, the news was good.  Her pressures were great.  Heart function was good.  All of her vessels looked healthy.  Her aortic arch looked great.  (Big relief there.)  She does have some stenosis in the vessel coming off of her aortic arch which delivers blood to her right arm.  This problem is actually a result of her original heart defects.  The great news is that she has adapted, and it doesn't seem to be causing her any trouble. 

The last results I'm waiting for are the biopsy results.  The doctor seems to think that based on the healthy look of her heart yesterday, her biopsy results should come back great too.  There are those rare cases in which the heart looks healthy, but the biopsies show big rejection.  The key word there is RARE. 

After all of the talking with the doctor and our transplant coordinator, I was able to go back and see AnnaSophia.  She has never come out of anesthesia well, and yesterday was no different.  The nurse told me that there is a condition called "Emergence Delirium" that some people go through when waking from anesthesia.  AnnaSophia was not delirious--she was totally lucid.  What she was experiencing was "Emergence Anger".  There is no other way to put it:  She was pissed off at the world. 

It took 5 adults to hold her down.  Talk about stressful--for her and me.  She is one strong little girl.  After a cath, it is required for the patient to have 4 hours of "flat time".  That means the patient needs to lay flat on their back quietly for four hours so that the vessels in the groin used for access don't start bleeding.  AnnaSophia was a wild one, thrashing around, attempting to cause physical harm to everyone she could.  She was kicking, punching and screaming for what seemed like 30 minutes.

Relief came in the form of MORPHINE.  Thank God for morphine!!!  Once it kicked in, she settled down and slept off her "Emergence Anger".  When she woke up, she was her sweet, gentle, charming little self.  The amazing thing is that she didn't pop her vessels open after all of her gurney gymnastics.  We were finally able to go home after 2:00, and both of us were exhausted. 

She is doing much better today.  Her only annoyance is the 24 hour Holter monitor that she has to wear.  Today, we rest.  We will wait for biopsy results, and be happy that she doesn't need another cath for two years. 

Words are difficult to find to express the relief and happiness I feel knowing that her heart is in great condition.  There will always be a nagging thought in the back of my mind wondering, "When is she going to get sick?  When will her heart fail?".  But for right now, I will focus on the here and now and rejoice in her good health.

AnnaSophia's Heart Cath Day 2011

It's 9:30 am and AnnaSophia is over halfway finished with her heart cath. 

We arrived at 6am this morning to check in, and she was taken back about 7:45am into the cath lab.  She was so excited to see all of her nurses today, and poured on the charm.  She did great with her blood draw, EKG and echo...all routine for her.  Unfortunately, she came unglued when we tried to give her the oral medication for anxiety.  She raised quite a fuss, refused to take it, and punched me right in the face.  At that point, the anesthesiologist said it wasn't worth the trouble.  I agreed wholeheartedly.

I carried her back to the cath lab to help get her settled.  When we asked her to breathe through the mask, she decided she wanted no part of that.  It took four of us to hold her down, but we succeeded.  What we all realized is underneath all of that cuteness and charm is a fighter.  She has survived all of the tough stuff, because she won't let this stuff beat her.

So far things are looking good.  Don't confuse that with perfect.  Her heart will always have little leaks here and there.  She might have some challenges, but it works great.  She has the heart of a big, strong boy beating inside of  her chest...Mason's heart.

I will have more detailed updates later, and hopefully some pictures as well.