Visitors and History...

My Dad & Sue drove over from Montana yesterday.  They faced all kinds of horrendous roads and conditions, but nonetheless made it here safe and sound.  Carla is so excited that her "Grandpa Sue & Grandma" are here for a visit ;)

This morning we went to the hospital for Carla's appointment with her pulmonologist.  We are leaving everything the same except we are going to start doing vest treatments three times a day, instead of two.  The idea being that the vest will help break up any casts when they are small and easy to cough out.  So, let's hope that it helps.  She has been going through cast cycles every week to a week and a half for the past month or so.  We are hoping and praying so hard that she gets her new heart soon, so that we can be rid of this horrendous complication.

It is so incredibly interesting the way the body works.  Because  honestly, Carla's heart function is not bad.  In fact, she has quite a large left ventricle, for being hypoplastic.  But, she has also ALWAYS had issues with heart pressures.  Before the Fontan her pressures were just on the verge of being too high to proceed.  But, the surgeon decided to move forward and try to get her through the third stage and hopefully take her to adulthood before having to move forward with a transplant.  But, only two months after the Fontan Carla started with all the coughing... coughing and coughing all night long...choking out phlegm.  It would happen for 3 days or so and then mysteriously just clear up, go away, and then poof, be back again in 3 or 4 days.  We were going crazy trying to figure out what the problem was.  Her cardiologist assured us it wasn't heart related, so I was thinking it was an allergy of a sort, but no matter what we did we could not figure out what the problem was.  This went on for five months before an effusion was discovered.  She lived with that effusion for another four months, waiting for her body to absorb it, thinking it was caused by pneumonia.  After it just would not absorb, she had a procedure to take the fluid out.  Three days later, it was back.  We went to Salt Lake and within a couple of days figured out that the effusion was in fact chylous.  Meaning that fat was leaking into her lungs from her thoracic duct, which takes fat from the intestines and dumps it into the lymphatic system up by the heart....  Well, the hole in the duct caused the fat to instead dump off into Carla's lungs.  The doctors at this time also discovered Carla had a blood clot in her heart and so closed the fenestration, which was a hole added during surgery and designed as a pop off for heart pressures.  After several months of a super low fat diet, Carla's duct healed and her effusion was finally gone. We were in a mood to celebrate, hoping to be done with the coughing and bad health...  BUT, she almost immediately started coughing out bronchial casts.  You see, when the fenestration was closed, it caused the pressures to get high enough that instead of just causing coughing and phlegm, the body actually started producing hard  fibrin casts in Carla's lungs.  It was another three months before she was diagnosed with Plastic Bronchitis... and three months after that her Plastic Bronchitis nearly killed her.  Again, and again, and again.  She spent nine weeks in the hospital, four of those weeks intubated.  It was the most horrendous time of our life...and hers.  That was almost a year ago to the day.  March 10, 2011 was the beginning of our transplant adventures.  I am at this point extremely ready to move to the next, hopefully more healthy, stage of Carla's life....

Here's to a perfect new heart.

Love, Jen

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