Mama said there'd be days... - from 9/20/2014

When Pat was referred for assessment for heart transplant, I was connected, by a friend, to someone whose husband had a kidney & liver transplant. She told me that this would be a roller coaster of emotions- and we definitely hit some of those ups and downs. 

On Thursday, having been cleared to leave ICU roughly 36 hours earlier, Pat was moved to the step down unit when a bed finally came available. At first, it was great- it's a private room, with a door, so it's substantially quieter than the ICU. There are two large windows, providing natural light and a decent view. A "couch" folds out to a bed, so I can stay with him at night- all perks. As a bonus, one of the docs or nurses had added a note to Pat's chart, and everyone knew it was our anniversary. The nurse even brought us two red velvet cupcakes. 

Then, we started downhill.

Medication changes were made that were different than what was explained in the ICU, including changes to pain medications. Nursing assistants were sent in to take vitals, but had no idea how to check his blood pressure with the continuous flow pump. In the middle of the night. And they apparently didn't know how to work the lights either. Around 5 am, a nursing assistant wanted Pat to walk to the scale, when he'd hardly pivoted from the bed to the chair. His PICC line started bleeding substantially, inexplicably. Around 8 am, a nurse came in with FIVE students. Shortly after that, we were told that Pat would be leaving the unit for an appointment. I asked four different people for an explanation of the appointment, and none of them knew what it was about. I asked for additional information about a procedure- not for them to change it, just to help me understand a little more- but never got the promised information. The communication issues, the lack of response, the confusion about pain meds continued. Pat was grumpy, uncomfortable and annoyed. Then the massage therapist came in and, after a brief conversation, said, "I left a message with the nurse last night; he didn't tell you?" No. No, he didn't.

And the frustration got to me. Meltdown.

I was embarrassed when the tears stung the corners of my eyes in front of the nurse; when the cardiologist, the pain specialist, the LVAD nurse practioner and her student AND the nurse manager all came in, I was mortified. It made me feel a little better when the cardiologist said that I had been a rock and had such a good perspective, so she knew if I was this upset, things were bad. But still. 

We worked together to make a new plan. The nurse manager gave me her business card with her cell phone number written on the back. The pain specialist is fantastic. She listened carefully, developed a plan, asked what Pat and I thought about it, put it in place, and then called later to see how things were going. (She also showed us pictures of her pet pig!) The cardiologist brought in the computer and went over things with me. She helped me understand a few things and made some adjustments after hearing some of my concerns.  (She also gave me a hug.) The LVAD nurse practioner reviewed the whole plan, made sure we were all on the same page, and came back later to see how things were working. 

There were a few bumps overnight, but today was notably better. Everyone came back to check in this morning. The pain plan was slightly adjusted again. Pat spent most of the day sitting up in the chair. We both were able to take good naps. The new plan has everyone feeling better. I know this is part of getting used to how things work here. Really, these things can happen anywhere. But I hope there are more days like today and no repeats of yesterday.