We celebrated an incredible soul early last month. I apologize for not writing right after or even on the month anniversary of his passing. But to be transparent, I wasn't ready to write this yet. But I believe now, I'm steady enough to write about my
It's been a week since Micah passed. I know that because the calendar says so. My body doesn’t recognize it yet. A week since Micah died, and we’ve now moved through our first Christmas without him. The day happened. The house was loud. The kids were
Our Micah passed this morning at 7:59am. Which still feels impossible to type, even though every part of me knew this moment was coming. He finally gets to experience the unconditional love I think he’s been searching for for so many years. He’s not in pain anymore.
Micah’s body is being overtaken by toxins because both his liver and kidneys are not functioning. The systems that normally filter and protect everything else simply can’t keep up right now. He now also has a blood infection. He’s being treated with antibiotics and is still on
I’ve been a bit absent from updating the blog, and I’m sorry for that. Progress has been slow, especially after being denied a transfer, and it’s taken some time to regroup. We are still pushing forward and continuing to explore the possibility of transferring Micah to other
I’ll start with the part we didn’t want. Micah was denied transfer to another hospital today. That was a gut punch. We’re still having to advocate hard for him at every turn and push for care to move at a pace that actually matches how complicated his
Micah isn’t doing great. His numbers are moving in the wrong direction, and a lot of his care has been painfully slow. He’s a complicated patient with a long list of comorbidities, and at this point he needs a higher level of care than what he’s getting
Micah is trying to talk, and he definitely has something to say about everything. We just… can’t understand most of it yet. I’ve caught pieces here and there — “I remember,” “Where’s Mom,” “I have…,” and “I love you too.” He knows our names, and he knows my
Last night and early this morning, Micah passed every breathing test they threw at him. By the time the pulmonary doctor came in today, he took one look at the numbers and said, “Oh, that tube is coming out.” And it did. Praise be. Micah has been absolutely miserable with
Micah has been very awake and noticeably oriented yesterday and today. He’s responding to most questions with a nod, a grimace, or one of those “I hear you but this is ridiculous” looks that confirm his personality survived the medical apocalypse. His humor is coming through in tiny facial
Yesterday finally showed up, acting like it had some manners, and brought Micah a few genuinely encouraging updates. His swelling is significantly less in his arms today, which is a huge relief to see. His Blood Urea Nitrogen and Creatinine numbers are also better today. We need those numbers to
Today was really just a rest day for Micah and that is exactly what his body needs right now. After the chaos of the last week and the major surgery and dialysis whirlwind, today’s job was simple: heal. He is still intubated and he is still on continuous dialysis.