Monday, June 26, 2017

avoiding the inevitable (heart surgery in our future again)

Friday, Auriana had a cardiology check up (as she does every 6 months). We have been watching her Mitral Valve for several years now, knowing in the back of my mind that sometime she will need a mitral valve repair, making her 4th open heart surgery. Every appointment the reality of this becomes more and more evident. The past couple appointments, cardiologist has used words such as "mild" and "stable", but Friday the words changed to "moderate severe". Moderate severe, in the land of heart defects, is a nice way to say "this is becoming a real threat but not yet an emergency". You see, in CHD world, it is common practice to wait until the child's heart is in a state of emergency before finally choosing to go ahead with the surgery you know they have needrd for some time. Auri's surgeon once explained it that "you have to wait until their body knows the heart is bad before you try to fix the heart". When Auri was born, we had to wait until she was in "full blown congestive heart failure" to fix her AV Canal. When her aorta was closing up, we had to wait until her heart was backing up to the point of discomfort in order to remove the membrane blocking her aorta. When the left ventricle was closing off, we waited until blood barely flowed through and was causing her oxygen levels to go down, before fixing it. Apparently this is to keep the body and the heart from going into shock. So, now with words like "moderate severe", she is once again in that tricky place of "bad" but not "too bad". Her mital valve is quite sticky and is pulling oxygenated blood back up into deoxygenated blood and mixing it up and spitting it back out into her body. But, her oxygen levels read high 90's (which is common for her even when her heart is bad). Auri's little body compensates well, but her heart will need repaired again to keep it working. The biggest indicatorat this time is her blood pressure has started evelvating, even while on blood pressure medication, and her heart pressures are elevating and causing one side of her heart to begin to swell. Currently, the goal is to get her to January or so before putting her in the surgical team referral pool again. For now, she is happy and "healthy" and active, and has no idea that she will soon be back in the hospital for her heart, fighting for her life again. My baby Auri is such a strong girl and she doesn't even know it.
God has gotten her through 3 surgeries and I know he will get her through another, but it doesn't take away my worry. For now, we will just continue to live life as normal as possible and try to keep the thoughts in the back of my mind of the inevitable surgery we have avoided this long.
Auri will start a new school in 3rd grade in just a few short weeks. She will go to the same school as Kylee and Lily. This will be an exciting new venture. She will also have her 9th birthday in just a few short months. For now, we will look forward to these positives and pray for the future. Pray that the goal of January does not become a sooner reality and pray that Auri will stay strong.

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