It’s strange to be saying Tyler seems to be turning a corner when he’s still as sick as he is.
In addition to the problems of earlier this week, he’s now considered a “falls risk” given his extreme weakness. He also has broken out in a rash on his legs. They suspect it’s folliculitis. Because the hair is falling out, each follicle site gets inflamed. It hurts and itches, like very bad razor burn.
The sorafenib is giving him blisters on his palms. Every rash and blister must be closely monitored to avoid Tyler’s own body infecting itself.
Enough already!
His pain is still severe, but on the positive side, his morphine has been reduced by 20% because Tyler would prefer to push through the pain than to have the side effects from the morphine. It is stringing him out horribly and causing extreme moodiness.
Actually, calling it extreme moodiness seems kind of euphemistic. One of his nurses said yesterday that even in a bad mood, Tyler is still very sweet. Ha! OK, we’ll go with that!
Really though, he is being sweet, because as bad as he is feeling, the poor guy keeps apologizing for how he’s acting. Tyler says he can’t understand how anyone can get addicted to drugs when you feel so horrible after the high wears off.
Also on the positive side, he is producing fewer secretions from the mucositis. This makes his stomach feel much better and makes swallowing a bit easier.
Over a period of a few hours, he swallowed all his medication yesterday, including some liquid antibiotics he hadn’t been able to get down on Friday. He endured quite a bit of pain.
But the big news is he swallowed some tepid tea and coffee! He was so happy! The sweetness hurt his mouth sores, but he said it was worth it.
More good news is Tyler had no fever yesterday, so they stopped the Gentamicin. But what makes Mom happiest of all is that on Friday evening, he FINALLY begain receiving nourishment via TPN.
As he gets a little better, they may revisit the dreaded NG tube since TPN is not good for the liver. The chemo meds he’s been taking can, by themselves, cause permanent damage to his liver, heart, and other organs, so if at all possible, it’s important to avoid further damage.
Also on the good news front, Ron is feeling better! In fact, he was well enough to spend the entire day with Tyler yesterday, giving me a night in my own bed and a day to myself at home.
I feel like a new person and am ready to face this new week!