Saturday, May 2, 2015


Where do I begin? And how do I adequately describe the crossroads at which we are currently at with Emma's care?  

Emma has always been seen as complicated and complex. I guess you could say that Scott and I have just learned to accept that....embrace it even....and work hard to try to find specialists to understand her unique anatomy and the way she responds to surgery, procedures, and medications.  However, that doesn't make this process any easier. You see, we came to Boston to see the number one doctors in the world in the pediatric cardiology realm.....hoping that Emma wouldn't be quite such an anomaly.  
The team here has work tirelessly to try to improve her cardiac function to give Emma the best chance possible with her current heart. What we have come to realize is that she is even stumping the best of the best.  We hear day after day that the way Emma is responding to surgeries and medications are just so unique and even more so frustrating to the team. 

They care deeply about Emma just as her   Dallas team did and it is extremely frustrating to them that they can't figure out how to improve the cardiac and pulmonary function. I told her cardiologist, here in Boston,  that I felt like we were in a déjà vu nightmare. I said this because several years ago after her Glenn and Cath  we were in the spot where Emma's  body was rejecting the surgery and despite making obvious changes that should have made her heart better, Emma's body is rejecting the surgery again. Not only that, but for some reason her left lung is not getting much blood flow despite her left pulmonary artery and pulmonary veins looking fine.  

So, where does that leave us.  Well, right now Emma is not a surgical or transplant candidate.  Her body has been through a lot over the past several months and there are several issues with her heart and lungs that are no where near being fully sorted out.  Please understand that this in NO WAY means that the team or Scott and I are giving up on Emma.  Everyone is hopeful that her body will recover and her heart will strengthen; however, we are all very realistic that her journey will continue to get harder and our options will come with more risk and less success.  For instance, one of the only surgical options left to consider has only been done to around 20 kids...3 of those being successful.  

In the meantime, Scott and I focus on today. We focus on what we can do medically to bring Emma back to some sort of normalcy.  Basically, getting Em back on feeds, enteral meds, stable kidneys, bone health, development issues, et . 

Please bear with us a navigate these stormy waters.  Decisions Scott and I are making are not always favorable or easy.  Know that we are doing a lot of praying and leaning on our Heavenly Father for support, wisdom, and guidance. 

God is good!  All the time! God is good! 

1 comment:

  1. Please know that people you don't even know are lifting your little Emma up in prayer. I agree with you that God is good, even when outcomes are not what we want them to be. May he continue to sustain you on this journey. A concerned someone in Oklahoma.