Do you hear that music playing?

I just gave Craig his Factor VIII infusion and he asked me quietly,:

"Do you hear that? That classical music?"

"No", I replied. "Is it very loud?"

"Yeah, the string section. I can hear it perfectly. I'm hallucinating an orchestra."

I said, "well that's kind of a nice thing to hallucinate, I'd imagine. Better than metal, right?".

Ahhh, what I'd GIVE to enjoy that with him. Not asking to be doped up, but to share something so deeply personal that only he is experiencing. If only he could describe it to me, but talking has become an issue of its own. The hiccups wear him out, dry out his throat, irritate his vocal cords, keep him up at night, and have done a bang-up job to his lips and tongue in terms of dryness. The hiccups are as relentless as a desert sun, yet he can't find relief even come nighttime. That's when the croaking and howling begins. The hiccups are like a yelpy, gaspy, chokey, croaky event buried under water. They crescendo louder and louder as the diaphragm becomes more irritated. Eventually, they take his breath and he chokes/hiccups in attempt to find his equilibrium again--equilibrium being the more normal 'hic-cup, hic-cup'. Sometimes, you can hear the fluid gurgling and I lie awake and listen, wondering just how MUCH of a risk is he for aspirating on the fluid. This morning was pretty horrible. He was flat on his back and it sounded like each breath and/or hiccup was fighting through water to the surface. I told him "let's prop you more at an incline" but right now all we have are several pillows, which squish under his weight. I will be hunting something down once I can find time away.

This morning, he asked for liquid morphine to cut the edge off the hiccup pain that's creeping around his ribs. The morphine seemed to stop them for an hour and the stillness made me worry. I watched his side to make sure his lungs were still inflating. They were, just more shallow and more frequently. Deep breaths are a thing of the past. But, we are going to start breathing exercises to help keep pneumonia at bay.

This sounds dire and extreme and maybe it is. BUT, his palliative care nurse said he looked better than the last time she had seen him. The last time was marked by incredible pain and frequent vomiting. Those have since been controlled with one of his many drugs. Now, if we could just turn the corner on those bloody hiccups....  

There is still plenty of fight left and an incredible will to live. We'll continue to take each day as it comes!

~E