Friday, November 15, 2013

from the front lines..






I am, once again, in a hospital room. We are in the ER, decidedly less pleasant than the rooms in the higher floors. This morning I found mom on the kitchen floor, though she couldn't remember how she got there. She suspects she fainted or blacked out in the foyer, and crawled toward the kitchen. Her heart was beating fast and she had trouble breathing. We decided to drive to the ER and now, two hours later, we are regretting the decision. She feels fine. We're both tired. She wants a nap and I want my usual Nespresso double shot.

In other news, we had an MRI on Wednesday that was "stable." I think "stable" means something between no growth and 15% or 25% growth, not sure which. So we're sticking with our treatment. This blog is an outlet, a place for me to be honest, and to be honest I was disappointed. I wasn't relieved like you would expect a person to be. I was actually hoping for the decline to continue so that we could end...well I was going to say "this phase of our lives" but that isn't right. It would be the end of a phase in my life, but it would be the end of hers, plain and simple. God, what a mess of emotions and logistics this has all been.

In less uplifting news, we had our first experiences with incontinence on Wednesday. Not sure if it was just that day, or if this is now a "thing" that we'll be dealing with. Regardless I bought a vinyl mattress cover and some adult diapers. I'll be getting in touch with hospice soon.

My mood has been great lately, and it has felt really good to help mom, even stripping her urine-soaked sheets.


Update: the chest exam showed multiple new pulmonary embolisms. We knew there was one in her chest in March when she was hospitalized with pneumonitis. She has since been taking Lovenox, an anticoagulant to prevent the formation of new embolisms...guess it hasn't been working. This discovery obviously changed the direction of care that the attending and resident wanted to steer us toward. All we wanted was to go home. A few phone calls, a plan to meet with a hematologist, a refusal of care form, and we were on our way. We were overwhelmed and tired. We have some serious conversations to have in the next few days; hospice means discontinuing treatment...palliative care but to what end?...if she has a heart attack in front of me do I call 911?...wouldn't that just put us in the same place we were in yesterday: a place where we know death is imminent and we just want someone to tell us what to do!


Image: my view here at Duke Regional Hospital's Emergency Room.

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