And Our Journey Continues...

Sorry for such a late post. Matt and I had a very busy day today talking with the transplant team, social services and surgery.

WELL - we have come to the day where some major decisions have been made. After weaning the epinephrine, Nolan's echocardiogram showed that his ejection fractions have gone back to where he was prior to going to Hershey Medical Center. The left side of his heart is barely functioning. When weaning him off of sedatives yesterday, he became very agitated. Basically, he is having withdraw. Having withdraw increases heart rate and expends a lot of energy (sweating, crying, moving). So, they started him on some methadone to ease the weaning and placed him back on the heart medication doubutamine (we had him off). This helps his heart beat more efficiently. He seems to be a little better, but still very agitated. When he gets agitated, his heart rate goes almost to the 220's. This can be very dangerous for Nolan as he could have a stroke.

Because Nolan's heart works so hard to pump blood throughout the body (and he is in need of two different heart medications to do so), his other organs may not be receiving the proper amount of blood to function. This poses a risk to damaging other major organs.

With all this said, Matt and I came to the realization last night that Nolan is failing. They are doing everything they can to sustain him, but the truth of the matter is that his heart is severely damaged. On Sunday morning, Nolan will be receiving a ventricular assist device (aka, Berlin Heart). This is a mechanical pump that's used to support heart function and blood flow in people who have weakened hearts. The device takes blood from a lower chamber of the heart and helps pump it to the body and vital organs, just as a healthy heart would.

Also on Sunday, Nolan will be placed on a list to receive a new heart. The ventricular assist device will actually help Nolan become stronger and healthier so he is ready to go when his new heart comes to him. We have switched our outlook on how can we save Nolan's heart to how can we save Nolan's life. By next week, Nolan will be awake, eating through a bottle, we'll be able to hold him and cuddle...and hopefully in the next 2 - 4 months Nolan will have a new day to celebrate, a new heart.

Honestly, I feel like I am in a Lifetime movie. Like...this isn't my life. This only happens to those other people you read about on Facebook. It is seriously an out of body experience. But, I know with the support of our family and all of you reading this, Nolan is going to do amazing. And after this when we are home, we will live life to the fullest with our family and friends. I want us to do new things, visit new places and live life the way we were meant to. Nolan can still go on in life as normal, play non-contact sports, go to school, go to college...maybe have a family someday...who knows. A heart transplant is not a long term solution, but, it gives him a chance. Who knows where medicine will go in the next 5-10 years.

SO...our journey now is really just starting. We have wonderful support here who have helped us the past 24 hours and the resources they provide to us are great. Matt and I are doing OK. Matt's brother, Blaine, flew into town and we are going to go have a good dinner and some drinks tonight. We have Nolan comfortable and on the morphine to help ease agitation, so he will be sleeping a lot.

Thank you all again for all the love, prayers and support. We will need them more than ever.

Love,
Cori