If Anything Can Go Wrong...

If you're following our adventure, I apologize for the gap in reporting. It has been a long, strange week, and it appears that even the ending is a little more complex than we had hoped.  Let me catch you up a bit.

After the initial good report following the catheter re-positioning on Tuesday, things just started to go downhill again. He slept well on Tuesday night, but on Wednesday started experiencing more pain. This coincided with an increase in the baclofen dose which may or may not be related. On Wednesday he also stopped feeling up to eating, which clued us in just how bad he was feeling. More pain meds followed with occasional periods of feeling a little better and spending time checking his social media connections via phone and laptop. We even watched a movie, Wreck-It Ralph, which he enjoyed. But the pain kept coming back. He told us on Wednesday that he just wanted to stop the trial and take the catheter out.

Thursday morning was no better, and we shared his wishes with Dr. Marks. He agreed that the pain was not worth continuing the trial, and made arrangements to remove the catheter Thursday at the end of the day. Essentially, we would need to get the dose of baclofen to a level that was double the one he was currently on to determine if it was going to be beneficial, and even if we did that, the pain that Adam was experiencing was going to be likely to trigger muscle tone so we wouldn't learn what we needed to learn. So the baclofen dose was adjusted down instead to allow his body to slowly wean back off of the drug.

Probably the high point on Thursday came when Adam received morphine in advance of the catheter removal, and we saw him the happiest he had been all week! He even shared a joke with the staff, that they should refer to "baclofen" as "back-no-fun" to describe the pain that he'd been experiencing all week in his back as a result of the testing. The plan was that we would be released from the hospital on Friday morning, and begin our return to normalcy, which added to the festive mood.

The actual removal of the catheter went smoothly until the very end, when the tip of the catheter snapped off and remained in his body. An x-ray confirmed the location of the remainder of the catheter and the team determined that it would require a surgical removal which would be scheduled for Friday. As of this writing, we are looking at the surgical procedure to remove the catheter taking place within the next few hours.

Unfortunately, this is most likely going to delay our departure until Saturday morning. They would like to see a more significant decrease in Adam's headaches, and will likely send us home with additional pain meds to continue after departing the hospital.

So...all in all it has been a disappointing, frustrating, and for Adam, very painful week. The doctors have told us repeatedly that they have not seen this series of circumstances take place before, and really don't know with certainty exactly what went wrong. The trial should have been only mildly uncomfortable, the catheter shouldn't have needed re-positioning, the catheter shouldn't have broken upon removal...and ultimately, Adam should not have experienced the miserable week that he has. So maybe now you can see why we didn't rush to keep you updated, we just kept hoping that the situation was going to improve and that we would have some good news to report. At this point, the good news is that we really should be about done here, and should be released tomorrow. But then...this hasn't been a week where the things that were supposed to happen have actually happened. We'll keep you posted.