Everything Changed (Part 6)

My recovery from brain surgery was just as my sister characterized it in her the last blog post:

"Seeing my sister in recovery was torturous. She had the absolute worst pain/most discomfort/eyes swollen completely shut/vomiting and dry heaving/not even a wink of real sleep/horrible nightmares/scary sounds from other patients/hourly poking and prodding from nurses and doctors/no shower/no food/no drink/and just a state of total shock from what could have been".

I don't remember much from the initial moments of waking up from the officially titled "craniotomy with brain aneurysm clipping". My first memory was of Leigh (nurse anesthetist and Ashley's dear friend) and another nurse telling me that they had put my hair up in a nice pony tail so that my hair was away from my incision. I hate having my hair in my face and felt infinitely grateful for their small gift at that moment. When I first arrived into ICU I noticed immediately that I had a roommate. There was just a curtain separating us and I heard most things that he talked about with his daughter that should have been entirely and fiercely private. My sense of time was really skewed and it wasn't long before my pain was intense. As the anesthesia from my surgery wore off they began to explore other options as I slept. I slept for twenty minute or so slices of time but woke feeling instead like many hours had passed. Soon my eyes and face and head began to swell significantly and I was no longer able to see. For the rest of my hospital stay I was treated as a blind patient with a significant fall risk. Because of that I had to use a bedpan to use the bathroom and couldn't get out of bed. That experience was very surreal for me: I had nurses touching me and talking to me and seeing me in very private ways and I could not see their faces. A few of them were so good to me that I will never in my life forget it; I feel they have a true gift and that they probably touch lives always. My pain level peaked frequently and my nurses did their best to curb the pain. Unfortunately my respirations weren't at the level they should have been and I was forced to keep the oxygen cannula on even though it was uncomfortable. My blood pressure was also lower than my doctors wanted and they chose to limit the Darvocet I was receiving. I understood their standpoint but this worried me because the pain medication I had been given the day prior caused me to vomit several times.

The Darvocet gave me relief from the pain but it didn't last long. I felt very afraid while I was in the hospital because nurses kept injecting things into the IV and it was unsettling not to be able to see them or what they were doing, even though they were good about telling me what they were doing, apparently it's just the kind of thing I want to see for myself!   Because I was so afraid I did not want to be left alone at all. Jeremy stayed by me the entire time except for one night. It was important to me that he keep the kids' schedule as normal as possible so on my second night he went home to take care of them and get them ready for school the next day. Ashley stayed with me that night and struggled so hard to stay awake. In the ICU they will allow visitors to say in the room overnight, but visitors can't actually sleep in the room.  Ashley was also there with me when I went in for my angiogram the next morning. Weirdly enough, the angiogram was the worst part of my hospital stay. It was a painful procedure in which a catheter is inserted into an artery and passed through the blood vessels to the brain. Once the catheter is in place, a contrast dye is injected into the bloodstream and the x-ray images are taken. Dr. Klop ordered my angio following the clipping to ensure that the three clips that had been placed were actually creating that pseudo-artery wall like he had described. In addition to that, he needed to check to see that the area of the artery where it had been narrowed was not narrowed too much and causing stroke like effects (e.g. not allowing enough blood through). I was very concerned that I was going to have to go back in for more surgery, even though Klop assured my family I was likely fine.

The next night other family members came to sit with me and I was finally able to move to a private room. I was still considered a fall risk but it was obviously nice to have my own space. I still had eaten only a bite of food here and there and the nurses were still working to manage my pain. On the day before discharge Ashley helped me with a quick shower. It was a real ordeal and I started to feel like I just wasn't up for this challenge. The ride home was rough as well, and while it felt good to be home Jeremy and I were both nervous about managing my care without the nurses. I was also really worried about the kids seeing me after surgery because of my swelling so when I got home and  into bed we turned the lights out. The kids entered the room with it dark and I gave them both a kiss and hug before they left to stay the weekend with their aunt. After saying goodbye to them I realized I COULD handle this, I had no other choice.

Jer also wanted to provide his impression of all that happened after I immediately returned from surgery:

Time couldn’t move fast enough. It seemed like a very long time from the time that Dr. Klopfenstein provided his pre-op consultation with the family prior to actually being able to see Mindi in recovery. We were able to visit her in an Intensive Care bed where she would stay for the next couple of days. I had tried to imagine what she might look like and how I would feel when I saw her. As much as I tried to prepare, I knew that it would upset me to see her. I was very happy that the surgery had been a success. As I sat with her, I remember thinking how beautiful she was and how beautiful it was that according to the doctor she would make a full recovery. I also remember feeling that I wanted to help her and having a huge feeling of helplessness realizing that I really couldn’t do much but be with her. As the hours passed in the hospital it seemed like days. I was fortunate to have family with me to pass some of the time. My goal the first night was to stay awake and not sleep. If I would have fallen asleep I would have had to leave her room and go to a lounge where I could supposedly rest and feel uncomfortable with the idea of leaving Mindi alone in that room. However, as the night wore on I realized that I was in no shape for the fight. At 3am I went to the lounge for a quick rest. The rest would be quicker than I had anticipated. I was awoken by the sounds of a family in crisis and was trapped in the lounge area as they discussed the terrible and private events that had occurred to a family member that evening. It was a very private and very sad moment for that family and I knew that I was unable to leave because of my position in the room and where the door was located so I tried to act as if I was still asleep. The first chance that I had, I jumped up and darted for the door. I will never forget that moment for as long as I live.  I checked on Mindi. She was sleeping. I went for another walk. I remember sitting in the cafeteria and having a drink and noticing a man in the area who was drinking coffee and crying. I remember thinking how sad he seemed and how fortunate I was that the doctor indicated that the surgery was a success. I had pondered all of the “what ifs” while also trying to ignore them prior to the surgery. Ashley and Ryan let me crash for a few hours at their house the next day. Words cannot express how lucky I felt and how much I appreciate our families. When I returned to the hospital Mindi was awake but fell asleep shortly after I arrived. Nurses and doctors were in and out. She was in a lot of pain and seemed very uncomfortable. I stayed into the evening and then returned home to spend time with Ava and Alex. They were concerned about mom. I could tell they had questions but were hesitant to ask. I loved them as much as I could in the short time that I was with them. I imagined how much they must be missing Mindi. When I returned to the hospital conversations had started to occur about discharge planning. Oh no! Did someone just mention possible discharge in a day or so? What was I going to do? Could I provide for her needs at home? She was discharged from the hospital at some point on Friday.

I recall the drive home. It reminded me of when Ava and Alex were born and driving home with them in the car for the first time. She seemed so sick and I was so nervous to hit the smallest bump or change lanes. Once we arrived home, I helped Mindi upstairs to the bed. My parents had been watching Ava and Alex and they had gone to Peoria with Ashley and Ryan for the weekend. It was time for them to come home. They had not seen Mindi since her surgery. She was very uncomfortable and was scared that they may be nervous about her appearance. Her face was still very swollen. When they did see her, they were pretty relaxed about it. They did ask questions and we tried our best to answer them.