Friday December 30, 2011

We are having a really tough time keeping our chins up today. This journey has taken yet another unexpected turn, and our hearts are conflicted. One thing Shannon didn't want was to suffer or end up in a hospital bed. While we're still at home tonight, a hospital bed was delivered to our door today.

Shannon's rebound day from yesterday continued into the wee hours of the night. At 3:00 am I was awakened by Shannon saying "What ... time ... is ... it?" I came to her side in the leather chair and explained that it was the middle of the night. She was wide awake and wanted to drink water and ask about the whereabouts of Erin and Dan. The mind was hard at work.

So when our hospice nurse Diane arrived today, she was startled at the uptick in Shannon. While that would seem like a good thing, there are complications... if death was no longer imminent, some needs had to be addressed. We decided it was time for a hospital bed for Shannon's comfort and to ease the difficult transfers we have been making. Dan's rotator cuff has been taking a beating as he's been using a fireman's carry to move her from a bed to the couch to the chair.

Why the changes? Dan and I had a long conversation with Dr. Wetmore (on her day off!) this morning and explained the changes we've seen. As we talked about what we were seeing, she was rattling off the different cranial nerves that are affected and trying to get a mental picture of Shannon and what might be going on with the tumor. Dr. Wetmore had told us before we left Memphis that there was always a chance that the cystic area of the tumor could decrease due to pressure on it. Without a CT or an MRI we can't be completely sure, but it appears that is what most likely has happened. Fluid in Shannon's brain is flowing more freely than it was. An uptick in alertness like this would have been the result of the surgery we declined to have one week ago.

So, where does that leave us tonight? The pressure in her head has reduced and it is less likely that will be the cause of her life ending. She is more alert, but the right side function is non existent and she can't hold her own head up. We have possibly entered a longer stretch of comfort care and we now have to think about how to keep her hydrated and fed when swallowing is still very difficult. 

We are exhausted from the steady stream of visitors, but being alone with our thoughts is no picnic either. We must find some more strength to carry on and keep honoring Shannon's wishes as best we can. Today was a hard day.

Shannon is alive, but this is not living.