Seems we just get started and before you know it

... comes the time we have to pull the tube.

The trial failed. There was no relief. No side effects. No effect whatsoever. We'll ask the doctor about the chances of a mechanical failure of some sort, but it just doesn't look good.

No matter the outcome, I believe in celebrating beginnings and ends. So last night we had a delicious dinner at Pappadeaux. BR had fried catfish, shrimp, and onion rings, and I had a filet and rock lobster. We sat up at the bar, which is where we are most comfortable, and drank a toast to hope.

Push it up! Push it up! WAAAAY UP!

The pain doctor saw BR this afternoon. He didn't seem worried that BR has not yet responded to the Prialt, telling us that they start with a "center of the bell curve" dose. This means that at this does, about 50% of the people get relief. He then increased the dose from 2 micrograms/day to 9 micrograms/day, saying that BR should definitely notice a difference in pain level by dinner time, but will also likely to have some mild side effects.

He also commented on BR's sacral insufficiency fracture, and repeated the Which doctor's recommendation of sacralplasty. When I said it wasn't considered medically necessary by the insurance company, he was surprised, and offered to make a case on our behalf. Sweet!

Discharged, but not discouraged

I woke up this morning feeling a bit down. With each new procedure to control BR's pain, my expectations get set at ever decreasing levels. Yet still, I have expectations. When pain relief didn't find BR yesterday, disappointment found me and decided to stay the night.

But after a nice hot shower, I decided to take stock of some of the good things that we've discovered.

• BR tolerated the three hour drive to Houston quite well, and is willing to consider some leisure travel.
• He is able to rest comfortably on a regular bed with just the alternating pressure pad, a foam wedge, and lots of pillows. This opens us back up to air travel. We'll just need to rent a shower chair, and of course a ramp van for cities without ramp taxis.
• Caregiving duties seem a bit less burdensome in new environments. At home, anything that upsets the routine is viewed negatively. On the road, there is no routine. My problem solving instincts get a workout as we adapt to each situation.

So when I went to pick up BR from the hospital, I did so with an intentional optimism. There are still four more days left in the trial, and pain relief may still find BR.

We see the doctor next on Wednesday for another adjustment.

BR and Prialt - Day 1

Six hours after the catheter insertion, BR wasn't getting relief. The doctor wants to give it a full 24 hours before adjusting the dosage, but I feel pretty sure it's a bit too low.



Discharge is still scheduled for Tuesday AM.

And it's in

The doctor came out to let me know that the intrathecal catheter insertion went fine and BR is in the recovery area. He gave me some advice on how to handle any pump alarms, and confirmed my expectations for the rest of the week. We should know in the next couple hours if this first dosage level has any effect.

Waiting for the doctor

Waiting to be called back