January 7

Moving day. One does not simply move out of Stanford. One must fight, clamber, cry, and wait out of Stanford Hospital.

Today was my hardest day yet. My mom worked tirelessly yesterday to get my dad out of the hospital and back home and today we saw many of those efforts come to fruition. Robbie, Carol, and I worked through a 12 hour shift at the hospital to have all the the papers signed, to have the caregiver training completed (bed to wheelchair, wheelchair to car, wheelchair to bed), to receive all the necessary information about upcoming treatment appointments, to get our hands on the list of many, many medications, to have all the prescriptions called in, to order the materials to be delivered to our house, to have dad’s IV line taken out. This required: one awesome discharge RN, one crisis nurse, one IV line nurse, three clinical RNs for basic hygienic needs, one occupational therapist, two PAMF team supporters, one Stanford physician, three security supports, and one physical therapist.

Hunter, Robbie, and I came by the hospital around 9:30 this morning, Peet’s in hand. Hunter shared a long conversation with dad before he headed out to Portland, where he’ll spend a few days with his good friend Pat, before the two of them head to Boston for their semester. Hunter remarked that my dad looked really good, which made the goodbye that much easier, and that much more difficult.

After Hunter left for the airport, my dad had an above average BM (B+ according to him). There were a few visits from PT and his nurses, who mentioned that he would likely be discharged today. With increasing frequency, there were phone calls to be made, and a long list of appointments to get through in order to make our way through the discharge process. This carried through the entire day: we were walking out the door from 11am until 4:30pm when we finally got outside.

I am utterly exhausted today. My dad grew increasingly more impatient as the day went on, which was challenging for me to manage because I had a harder time coming up with explanations for our continued delay. Carol and Robbie were outstanding. They were soothing to me, and lighthearted and engaging with my dad. Carol, our nanny of 23 years, was a nurse and is well-acquainted with the medical world. She is a great advocate, and brings us all a jolly worldview when the going gets tough. Robbie has a knack for medical speech, and is a patient, soothing, and loving force for all of us in and out of the hospital room.

Communication between party members is an issue in any hospital. As a family, it’s often difficult to communicate everything that happened each day at the hospital, so it’s no wonder information gets lost between entire hospital teams. While I can empathize, I still feel frustrated by certain events that passed. At one point, I was trying to figure out how to get an MRI from Stanford to Palo Alto Medical Center, where he’ll be undergoing treatment beginning on Friday. I was asked by my dad’s nurse practitioner to – upon discharge – drive my dad to the other hospital to have him sign a form she required. Apparently, the fax machine on my dad’s section of the hospital is broken, so this was the next best option. I lost it, and was immediately supported by my angels Robbie and Carol. We didn’t do that. We kindly (emotionally) asked PAMF to figure it out on their own.

Anyways, the details are ultimately not important. Jody, my dad’s OT (who came in from her day off of work to help my dad discharge) brought us all out of the hospital to Carol’s volvo. At this point, my dad met this man named Trie, who I am convinced was his guardian angel sent to inspire optimism into my dad at this challenging point of transition. Trie told my dad that he was going to make it, he just knew it. My dad really appreciated these words from Trie, and asked to have a photo with him (see below).

As we drove home on Sand Hill with the windows down, my dad impulsively opened the car door. Due to the brain surgery and residual tumor, his impulse control is poor. He doesn’t have the neural connections established to understand the cause and effect of his actions. Thus, we held hands together for the rest of the drive home. His left side isn’t remotely as accurate and strong as his right side, so at least there’s a little less danger on one side.

We still have a lot left to do. Our house has a few steps on each side, so Robbie and I had to heft the wheelchair and my dad up these different steps as we brought him into the house. Also, the hospital bed wasn’t delivered until 9:30pm tonight, well after my dad’s 7pm bedtime. Imperfect, yes. But at least we made it through the hospital and back home.

As we will face with every step, this accomplishment is met with another set of difficult, new challenges. My dad was supported by 24/7 nursing care for the past three weeks. Now, we are responsible for this.

We’re exhausted, and happy to rest our heads. Dad’s move from the hospital to home is only the beginning of this process. On the bright side, any visitors should come to the house. Someone will be here all day everyday, so the doors are open.

Daily Kennism:

“Today is a big fucking day”

 

With love,

Mikaela

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