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May 05-11

This Week

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Hi Everyone, 

Sorry for the delay, it has been a busy few days for us. To catch everyone up -- after having an ejection fraction (EF) of 15-20% after her heart attack (normal being around 60%) Morgan's heart made improvements on its own. It is quite remarkable, but after about a week of rest part of her heart around the heart attack appeared to emerge from hibernation. After a few days of remaining steady at an EF of 40-45% the heart failure team assessed Morgan's need to remain in hospital. They decided that it was in her best interest to be discharged. So Tuesday evening she came home from the hospital for the first time in almost 3 weeks!

She is not currently on the transplant list as her numbers are too strong. However, she has the 6 stents in her heart and she has to wear an external defibrillator for now 24 hours a day. The medical staff has told us time and time again that we must take this one day at a time, and uncertainty is going to be a regular part of life at least for quite some time. There is no reason her stents and heart can't last for many many years in their current state, however the trajectory is unknown. She may improve, she may remain stable, she may also experience a slow decline with her EF falling back to the mid 30s and then she would be assessed for a heart transplant, and lastly any major event could happen at any time. We are all aware of how unsettling this is, and we are doing our best, Morgan included, to try to wrap our minds around this reality, and begin to appreciate all of the small moments and improvements. 

For now we celebrate the little things. Morgan is home with our parents sleeping in a real bed. She is working every day to regain strength, and she will begin working with cardiac rehab starting next week to redefine what her new baseline is. Her next few weeks will involve a myriad of appointments establishing care and following up to ensure her medications and numbers are all remaining steady. The road ahead will be long and varied. The goal is to get her back into her house in the coming months, and return to her new normal as soon as possible.

Our whole family wants to take a moment to give thanks to everyone. You have all been such a part of our family's ability to be present for Morgan, and your continued love and support means the world to us. Thank you!

There have been a few key learnings from this roller coaster:
1) Love hard and love now- tomorrow is never promised
2) The power of community- we truly could not have gotten through this without all of the messages of love and support. The meals, the notes, the time, the messages, everything- and over the next few months of starting to redefine what life looks like for us and for Morgan we appreciate the continued support!
3) Be there, in times of need when there feels like nothing that can be done, just being there is beyond powerful. Be it in person or over the phone. When everything feels lost and the world is crumbling its the love and support of a friend or family just being there that really does make a difference.

So thank you everyone, we cannot say it enough. We would not have gotten through this without the support of you.

Love,
Jake and Alexis

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