Monday, April 7, 2014

Now what?

Whats that now? I don't understand? How? Why? Come again? Can you please repeat that a little slower with some valium in my vodka. Yup, this is me on Tuesday of last week.
Sometimes dates are embedded into your brain. Dates that will never be erased from your memory. For me, my kids birthdays, my anniversary, your best friends birthday from Junior High and High school (Nov. 22, Happy Birthday Lisa!), The date your daughter crashed, and the doctors told you to say goodbye to her (September 14, 2007), The date the specialist for cardiomyopathy called and shattered my world...again. April 1st. The day that many people play funny, cruel, or insensitive jokes on other people was the day that the Cardiomyopathy Dr. Jeffery Towbin called my phone as I am walking into the state office to try and get better insurance (or at least help with our current insurance) and told me that he was "greatly concerned" for my daughters heart.  You see, a few months ago upon the request of our awesome cardiologist we started giving information to Dr. Towbin, to get a second opinion on Tara's heart. Why it was getting worse after being stable for so long? Are we on the right tract for medications? What else can we do? I knew the conversation had the potential to be hard, but honestly I never expected it to be. Kind of like that first cardiologist appointment that I ever went to on my own after Tara was finally discharged from the hospital after 3 months. I got dressed up, put on make up, ironed up my nicest pair of jeans I owned (who ever irons jeans?), even did my hair. I went into that appointment expecting to hear the words Cardiomyopathy? No that resolved itself some time ago, her heart is completely healed. What I got instead was a crash course on dilated cardiomyopathy and the cruel statistics and what my world would have in store for me with it. Well that and the knowledge that when you ugly cry, snot will remove water proof mascara. This is kind of how I felt on April 1st. When Dr. Towbin starts explaining the workings of Tara's heart, and how her heart is "unique" to other children with Dilated Cardiomyopathy and her snapping motion her heart does when it relaxes instead of a fluid movement. That her left atrium despite not having extra fluid volume had an increase in pressure in that chamber, and that there was a stiffness in her left ventricle causing the fluid build up and the dilation of her left atrium.  (yup more medical mumbo jumbo that I wrote down on chicken scratch paper then immediately called our local cardiologist to get a run down on what that meant in the real life world).  What this means is she has Restrictive Cardiomyopathy as well as the Dilated Cardiomyopathy, and from his findings he does not think the one caused the other....basically dumb luck...again. The link I provided is from the american heart association on a little run down about Restrictive Cardiomyopathy, but basically it is a stiffening in the lower chambers of the heart (ventricles). The hearts rigid walls fail to relax and expand "restricting" the ability of the heart to fill with blood. While the heart is pumping it is unable to supply enough blood to the body (causing syncope episodes *passing out*, drops of blood pressure, low heart rates, all things Tara has been experiencing recently). This puts pressure on the upper chambers of the heart (atria) and they become enlarged. In advanced stages of the disease the heart may not pump blood effectively and blood may back up into the liver and lungs as a result of congestive heart failure (Tara is currently in congestive heart failure). What this means to us? Well the short story is we need to figure out what caused her RCM (restrictive cardiomyopathy), and make sure the other kids are not at risk (they will all be screened).  They will be doing an MRI with contrast soon (the order has been put in at Rady Childrens, but we do not have a date yet on when) to find out a little bit more about her heart (this has the potential to be a risky procedure for Tara so please keep her in prayer), there is also talk of her getting an AICD (internal cardiac defibrillator) put in place because of the much increased risk of sudden cardiac arrest.  I will (try) and update this sight when I know more, but for the most part, please just pray.  I feel like yet again we are walking uncharted territory, and again my daughter is baffling doctors.
Again, prayers are much appreciated. Especially in the next month or so when we will be finding out more information on this disease, and how it is going to effect our family.