Today. Sigh. Today Lorelei crashed. And our world continued to crumble around her. In a dark hospital room. 12+ hours from home. I don’t know how it is almost 7PM right now because it feels like I just woke up, after a handful, of very much needed, hours of sleep. All of us finally slept. The morning was good. Lorelei was sitting up and in good spirits. And then it quickly changed. A split second. A that-escalated-quickly kind of change.
We had to make decisions. Things we thought we knew. The plan we thought we had. Things we had in mind for when this dreaded fear would, god forbid, maybe happen to us. Because Mitochondrial Disease sucks. It’s life threatening. It’s ugly and mean. And it doesn’t care who is in it’s way. Paired with the flu, it’s a disgusting duo.
Lorelei was handling the flu like a champ but her body was getting weaker and weaker. Her little mitochondria were slowing down. Decisions had to be made.
She was almost gone in my arms. But we decided to intubate to give her one last fighting chance. To let her body rest while medical technology would do the work for her. The doctor said she was worried Lorelei wouldn’t survive intubation because of how weak she was… so this was our last shot.
We intubated.
She made it through the procedure.
And now we wait and see.
God is good. No matter what. I will say it again, God is good. What a privilege it is to be a parent of a special needs, medically fragile human with such excellent hair. It pushes, twists, hurts, gut-punches you on a daily basis. But Michael and I were chosen to be her parents for a reason, and we will continue to love, fight and pray for our little Doodle.
There is no possible way we can get back to all of the messages, calls and carrier pigeons y’all have sent for us. Please know we are grateful and love all of you. I will keep you updated as much as I can.
PS. Wash your flipping hands. Then wash them again. Then hand sanitize. This flu is an epidemic all over our country right now. And we are beyond cautious. She has not been around anyone who is or was sick. We hadn’t even made it to germ-fest Disney world yet… so go wash your hands. Then chlorox your cell phone. And wash your hands again. Our actions of good hand hygiene and being aware of germs is the only hope we have to stop the spread of the flu.