Feeling heart broken after Marcelines cardiology appt today. Neurology came to see her during appt and incision looks great and doing great from 2nd craniotomy that was done on July 2nd. They did an echocardiogram today and when they did the VSD( ventricular septal defect aka hole in the ventricle) repair the second time the wall around surgical areas near ventricle began to thicken which can be normal over time. They informed us the she may need another open heart at age 2 with growth. But the follow up after the 3rd surgery as you know showed the growth was significant that she needed her 3rd open heart. This time it remains to have significant thickening and is impeding blood flow through the mitral valve and needs to be repaired again. This is very near her left valve and they though they would have to replace her valve last time but didnt. This may be the case this time. Our biggest hope is that they can move her pulmonary valve to replace and use a synthetic valve to replace the pulmonic valve rather than the metal mitral valve replacement so blood thinner for life may be avoided. Cardiology is going to review this as a group to see what will be the best scenario for Marceline. So we await the phone call but know a 4th open heart will be needed. Please keep is and her cardiology team at Cardinal Glennon in your prayers. Our family is devastated at this time but we remain hopeful and full of faith that Christ will carry us through this again. They asked if we wanted to wait to resume her physical therapy but we feel it will keep her motivated in the meantime. Even if its only one visit. She has been a trooper through all of this and always works so hard and ALWAYS with determination and a smile. We rarely see this child without a smile on her face throughout all of this and I know this is due to our love for her and the strength she gives us and the strength knowing she can do all things through Christ whom strengthens her and I am claiming that by His stripes alone she will be healed. Jade and I are both so grateful to all of you. It hurts so bad to say this but I say it always with confidence she can beat the odds but as always. Go Marley, you are most beloved.
Posted on: Thu, 31 Jul 2014 23:38:32 +0000
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