At Home

I've been home for a few days, following a 9-day hospital stay (including one day before surgery following a tumor embolization procedure) and 6 days of inpatient rehab.

Of all the "worst-case scenario" things that could have happened following brain surgery, I consider myself very lucky. I have some vision problems (double vision) because my left eye and eyelid aren't moving as they should, but I can see decently if I use an eye patch to cover that eye. And I have some facial paralysis on the left side. Both deficits are expected to correct over time, though the amount of time is unknown.

I'm still pretty tired and weak from 15 days of lying in either a hospital bed or rehab bed. I was given some exercises to do at home (PT, OT, and vision therapies) and will also do outpatient physical therapy. But I'm much happier at home, surrounded by my family, better food, and better sleep.

I've had multi-day hospital stays before (three c-sections) and knew that I could expect little sleep. Someone would check my vitals or administer medication throughout the night. In many ways, rehab was more frustrating. I wasn't allowed to get out of bed without supervision, so it meant paging a nurse at all hours if I wanted to get up to go to the bathroom.

Dinner was served around 5:00 pm and breakfast didn't arrive until 8:00 am (and the food was terrible). I had my family bring me some snacks, like pudding cups and applesauce, but couldn't get up on my own to retrieve my food. Plus, I struggled with pain overnight, trying to hold my neck in a particular position to avoid sleeping on the 8.3 cm incision in my head.

The incision site is behind my ear and entirely hidden by my hair. I sported staples for the first two weeks, but those have now been removed.

I have a bunch of restrictions, like no bending over, lifting anything, or twisting (what the PT called "a BLT sandwich"). No driving until the surgeon clears me. I also have a follow-up with a neuro-ophthalmologist in a few weeks to test my vision overall.

I'm trying to do small things today, but everything is exhausting. My brain (thinking) moves a lot faster than my body. I needed to order something via Amazon and lay in bed thinking about it for a long time before I mustered the energy to pick up my phone and place the order. Today, my "one thing" was sitting in front of my computer to write this. I also do short walks on my walking pad every day (per PT instructions) to rebuild my stamina.

I told every doctor who would listen that I wanted to be home by my daughter's birthday. I had a case manager in rehab and emphasized to her that my daughter was a baby born after pregnancy loss. The case manager nodded and said, "She's your rainbow baby. We'll see what we can do." And I managed to get home a few days before her birthday.

It's good to be home.