ThursdayThursday was my last full day at the hospital, and it was encouraging. They let me take short walks through the corridors on my floor - first using a walker and then unassisted. They'd already taken out my morphine drip. Soon after, they removed my oxygen assistance, IV drip, drains, pressure dressings, and urine bag. By Thursday evening, all dietary restrictions had been lifted. Though I was allowed to take one Vicodin every 4 hours, I went most of the day on one pill.
Things got harder at night. My pain started coming back, so I took a whole Vicodin and went to sleep. I woke up with bad pain (8/10), but I needed to wait an additional 2 hours before I could take more drugs. My spouse read my letters to me until the pain subsided.
FridayWaking up Friday morning I felt better and was discharged that same day. Other than walks to the bathroom, I was to be on bed rest. After being cleared to leave, my family started packing our stuff. I had maintained good spirits during my stay, but waiting in a hospital bed while my family packed made me so restless and I got pretty grumpy. I passed the time trying to untangle my severe bed head.
Over my 3-day stay, I had become quite attached to my nurses. I had written
this sappy thank you note and had envisioned an emotional goodbye. But as I was wheeled towards the hospital entrance, most of the nurses were too busy caring for other patients to even wave. They're such amazing people.
People warn that sitting is the most uncomfortable position after this surgery, and even short drives can be miserable. The hospital was about 35 minutes from our Airbnb, so my mom was worried about the drive. My bedroom was on the second floor, so my mom was also worried about climbing the flight of stairs. My bed was very low to the floor, so my mom was also worried about being able to climb in-and-out of it. The configuration of the bedroom wasn't nearly as optimized as the hospital, so my mom also was worried about me having to move too much to get things. But I did each of these things without much trouble. I felt great to be so capable so soon after surgery and posted this picture on Facebook.
In hindsight, my mom was right to be worried. Soon after taking the picture, I began shivering. I had developed a fever and was led back to bed. I had people all around, but since no particular person was in charge of my care, it felt like it was falling on me to direct people. People kept asking me questions. "Do you think you should take these vitamins? Should we take your temperature again? Where is the thermometer? Why haven't you emptied your catheter yet? Where are your ice packs? Aren't you supposed to be using the sprirometer?" Pain, as bad as I had experienced thus far, came back. My surgery site ached terribly and my body shook from cold. The room was like a crowded restaurant with everyone talking at once, and when I needed help, it felt like no one could hear. I asked my boyfriend to clear the room, but nothing happened initially. Then, I broke down. People asked me what was wrong, but I couldn't manage coherent speech. My freak-out killed the mood in the room, and nearly everyone left.
I was humiliated. It's not rare for SRS patients to care for themselves after leaving the hospital. I had more help than just about anyone and was still failing to cope. It was the worst I had felt since surgery. Eventually, my Vicodin kicked in and I calmed down. With my spouse, my boyfriend, and my sister, we worked through the new challenges created by the new environment. It was decided that my boyfriend and sister would co-direct my care, and everyone else would make an effort to give me more privacy. They assured me that everything was going to be taken care of and that from then on, people were going to be giving me orders rather than asking me questions. My sister called the emergency line to verify that my fever wasn't too high. It all made me feel much better.
But that night, I continued to pay the price for "over-doing it." The pain was just horrible (10/10). I had already maxed-out my Vicodin. I writhed in bed, moaning, crying uncontrollably, and unable to speak. My ears filled with water from sobbing while flat on my back. My boyfriend read me my letters, but it didn't help and mindfulness meditation seemed to make things worse. I just suffered and waited for when I could have Vicodin. Then, in a moment, my body went limp and the pain seemed to disappear. I was completely still and struggled to tell if I was paralyzed. My whole body felt wet, and I wasn't sure if it was sweat or blood. I couldn't understand what had happened and feared I had hemorrhaged or had a stroke or an aneurysm. But things soon normalized and a less severe version of the pain returned. I checked the surgical site and was relieved to see everything looking fine. Still worried something awful had happened, I made sure I could move my legs, touched each of my fingers to my thumb, and counted to 30 by threes. I seemed okay. Finally, I could take more Vicodin and get to sleep.
At one point that night, I had asked my boyfriend to take my picture. I think I had been feeling guilty and stupid for posting that healthy-looking picture of myself, as it might lead to people to underestimate the difficulty of recovery. Honestly, I'm photogenic by nature, so it doesn't even look bad. At least it clarifies I haven't spent the whole recovery grinning.
SaturdayWaking up Saturday morning, my teeth were covered in blood, apparently from having bitten my lips. I described what had happened to my sister, who is a registered nurse. She suggested that I had probably just passed out from the pain. She was very empathetic but didn't seem worried. I noticed some redness near my surgery site and called the emergency line. Dr. McGinn picked up and dissuaded me of any worries. Still, I felt shaken and committed myself to taking it SUPER EASY on Saturday.
Saturday ended up being successfully boring. I spent the whole day in bed, other than bathroom trips. I took all the Vicodin I could, even when I was feeling fine. My pain stayed controlled. I watched the movie "About Time" with my boyfriend, which I very much enjoyed.
Despite being bed-ridden for 5 days, "About Time" is the only movie I've watched. I have also watched 3 episodes of "The People vs. OJ Simpson" and a few YouTube videos, but it really hasn't been nearly as much TV as one might expect. I haven't been reading much either, having only completed 5 chapters of Pride and Prejudice. There's plenty of people to talk to, and I've found that if I'm not feeling well enough to chat, I usually don't feel like reading or watching TV either.
The highlights of Saturday included my daughter running around the house wearing some purple glasses:
And a surprise visit from my cousin who, despite living in San Francisco, was randomly nearby:
Saturday night was not nearly as painful as Friday night, but I still struggled to sleep well.
Sunday MorningIt's Sunday as I write this. I felt exhausted waking up this morning. This was the first day where I experienced noticeable muscle weakness. As I rose from bed to use the bathroom, I could tell that this time would be different. I felt more light-headed than before and relied on my boyfriend to maintain my balance. I walked to the toilet and uncapped my catheter. Midway through emptying it, I dropped the plastic cap on the floor.
I asked my boyfriend to take care of it. He took it but said he needed to ask my RN sister how to clean it. He left my side, and only then did I realize how unsteady I was on my own. I broke out into a cold sweat, pulled my robe off, and wobbled on my feet. I cried out for him, but he said he would be right back. He told me to sit on the toilet seat, which I eventually did. Shortly after sitting down, I passed out entirely. When I came to, I was stilling on the toilet but was being held and rocked my boyfriend. I still had my eyes closed, and just let myself be comforted for a couple minutes while I regained my strength. When I finally opened my eyes, I was surprised to see that I was actually in the arms of my sister. Both her and my boyfriend led me back to bed.
I fell back asleep for an hour or so. I'm feeling much better now.
