Here’s how Blake’s been today. 

This update is hard to write because he’s not getting better. 

Before I get into it, let me say that prayers were answered with his ability to sleep last night. I thought he was going to be restless and trying to climb out of bed all night. But he slept and was snoring. So it was actual sleep, not just out of it state of mind.

But he’s still sleeping today. His mental status feels so daunting to me. My mind goes long term like it’s not going to get better, even though I know his liver is still very sick and when it gets better, his mental status will follow. But still the doctors come in more frequently to check on his mental status and says that he has encephalopathy, which is a broad term that describes any brain disease that alters brain function. The doctors still say it’s reversible, but every time they come and do a neuro check on him, I’m on edge that things will deteriorate even further. 

His liver was checked out again with an ultrasound because the numbers don’t look better. He’s getting high dose steroids to calm it down, but they haven’t seemed to be working yet. His ammonia level is higher than normal.

Then there’s the oozing. I didn’t want to say where he was oozing from because no one wants the world to know that there is blood coming out of your bum. But that’s what’s happening. What his doctors want to do is scope him to see where the bleeding is and fix it. Because as long as he’s bleeding, they can’t give him the medication to prevent clots from happening in his liver. But a scope may make things worse with the fragile tissue in his gut from the mucusitis. And it may introduce bacteria, which could cause another problem. So they’re holding off on the scope until their hand is forced because the risk is that high. 

And his skin is so thin and fragile from the high dose chemotherapy that he’s got some breakdown happening. The wound team is addressing it all, but it’s another area of discomfort for him that hurts my heart. 

Please pray for the oozing to stop and for him to be able to get the medication that’s helping his liver. Pray that his liver will respond to the high dose steroids. 

Much love!

Kim