Nov 19, 2019 Latest post:
Nov 26, 2019
Friends, it is with a very heavy heart that I tell you that we've made the decision to proceed with end of life care plans for Zaavan. Everything that can be done, has been done. We had a care conference yesterday and it was a unanimous realization that unless we take invasive, risky life saving measures (which would very likely end up weakening him further and making things worse) he's requiring full time mechanical ventilation. Our options are limited, and ultimately everything we do is just stalling the inevitable. Zaavan has been fighting since the day that he was born, and his body is telling us that he's tired. He's weak. It's time. We have to be attentive to what his body is telling us and love him enough to let him go.
We're making accommodations at an amazing pediatric hospice facility, where we will do everything in our power to keep him happy and comfortable, until he tells us he's ready. I can't say how long that may be. Ideally, a couple of weeks, in order to welcome anyone who wants to see him and say goodbye. After that we will slowly withdraw support, and likely only have hours left with him.
Obviously, my heart is breaking. This has been the toughest week of my life, and is just the beginning. We're devastated that our worst nightmare has become a reality. BUT, Zaavan is and has always been the one in charge, and we owe it to him to let him die with dignity and grace, on his terms.
In order to keep everyone updated regularly and not overlook anyone, I'll be creating a CaringBridge account and I'll post a link to the site once I get it established. In the meantime I'll post a link to Crescent Cove, the hospice facility where Zaavan will spend his final days.
I'm terribly sorry that I don't have happier news to share, but our goal has always been to give Zaavan the best life possible, not just a life. We truly feel in our hearts that this is the best decision for our son. Please understand if I don't respond right away to any who reach out, it's overwhelming and exhausting just to merely go through this planning process.
All of you have loved and rooted for Zaavan for so long, and we are grateful that he has such a strong and plentiful group of cheerleaders. We appreciate all of the prayers and help you've offered over the years, we need your strength now more than ever. 💔💔💔💔