Good days vs. Bad days

Another unrelated picture. Why not!
This is from Thanksgiving weekend at Hatteras — when Chad was feeling bad, but nowhere near as bad as he feels now.
Granted, he’s also had the second shunt surgery since then.
Insanity.

People often ask me how Chad is doing. And by often, I mean all the time.
Which is perfectly fine – because I would want to know, too.
The trouble is that it’s hard to give an answer sometimes.
It’s hard to describe how he feels when I’m not quite so sure.
I do know when he’s feeling better because he talks a little more, is out of bed a little longer, and may even attempt a joke or twelve.
It seems like we’ve had our fair share of bad days this week alone — and I am saying that with caution.
The beginning of the week was just unpleasant, but I thankful that it wasn’t as bad as it could be.
Are things rough? Yes. Quite regularly. But they could always be worse – he is still hanging in there and fighting as much as he can.

Today seems to be leaning towards a better day than yesterday (which was better than the previous, and so on), but it’s nearly 1pm and I haven’t seen any signs that he’s ready to get up for a while. He hasn’t eaten anything since 9pm last night – which makes my tummy rumble just to think about.

I did talk directly to the PA that works with Dr. T. He is a super helpful guy, but was trying to tell me to stop calling. He was nice about it – and I understand. He gently told me there is nothing else they want to try right now. If the new pain med doesn’t work, then we’ll go back to Vicodin only, since it does seem to take the edge off.
He clearly told me that there is nothing else to be done right now and we just have to give it time and see how Chad’s body heals itself from the recent surgeries and shunt resets. He is writing a prescription for a month’s worth of Vicodin and they will see him at his appointment in February – unless something drastically changes.

That is kind of hard to hear — all I want is for someone to help Chad feel better. And I hear them; there’s nothing they can do right now. I get it. I understand that they need to give the shunt a little more time to drain and a little more time to work. But Chad shouldn’t have to suffer for another month though, should he?
It’s all quite frustrating.