On May 27th, I was admitted to the hospital to have my shunt clamped to see if I could live without it or get the ventricles of my brain to open up large enough to do the 3rd ventriculostomy surgery. My surgeon chose to tie off my shunt in my abdomen because opening up my head would just cause a headache and we didn't want to confuse the situation. It was expected that I would be in the hospital for about three days. That didn't happen.
For my own personal reasons, I chose not to tell anyone except family members and a few close friends in my area. I have very important reasons for this and I stand by them. I hope that everyone will understand and respect my decision.
So when they took me back to the pre-op area all the trauma over my lifetime came back to me AGAIN. I couldn't stop crying. My husband had to pretty much drop me off and leave because he had to get our son from school. I laid on the gurney listening to music in the dark and cried. When my surgeon came in, he asked how I was doing. I wasn't able to respond. He seemed to understand and turned away. Then he asked if I was having a bad headache that day. I managed to say yes and that I didn't want to be there again. He said, "I know Shelley" and left to go scrub in for surgery.
The actual surgery only took about thirty minutes. They didn't even give me general anesthesia, just local. Luckily I don't remember anything that happened in the operating room since technically I wasn't fully asleep.
When I woke up in recovery, I immediately had a headache and nausea. I tried not to be discouraged but I couldn't help it. After recovery I was taken to ICU for close monitoring. I stayed there just over night until they felt that I was stable enough to go to a regular room.
Thursday afternoon I went to a regular room. I had a constant headache but everything else seemed stable. They encouraged me to walk about the floor and even go outside. Then Friday arrived. The headache increased, my walking got worse and I started vomiting all over the hospital when I was walking around. They paged my doctor. He decided that they would make me as comfortable as possible that evening and he would see me in the morning.
Saturday I had a horrible experience with a nurse who took the situation I was going through as a migraine although it was not a migraine. She pretty much kicked my husband and son out and also my follow hydrocephalus friend who was visiting. She wouldn't let me get up, didn't check in on me to give me pain meds, made my sit in the dark without the television or music on. As soon as shift change occurred I went out into the hallway and cried. I ran into the charge nurse, explained the situation to her and informed her that I felt no one was taking me seriously this hospital stay. My pain was not being managed.
I felt better after talking to her, getting some pain meds, and my husband brought my son for a quick visit before visiting hours ended. Then Sunday came around.
My friend came back for a short visit and then my husband and son came by with a friend of my husband's. When they were leaving, I thought I would walk them to the elevators. Well I didn't make it because my leg kept giving out. My husband had to help me back to my room. Things only got worse from there.
My walking was so bad the rest of the day that the nurses understandably wouldn't allow me to get up anymore on my own. I had to use the restroom during a neurological check at midnight. When I was walking back to the bed I passed out on the floor. Luckily I landed on my knees in slow motion and didn't hurt anything. I couldn't speak or get up for several minutes. The nurse paged the charge nurse, they got me back into bed, and called the emergency response team. They took my blood pressure and found that it was dangerously high. Your blood pressure is correlated to your brain pressure. I was devastated.
The on-call doctor was paged and he ordered a CT scan. Although my ventricles did open a little bit for the first time in 17 years earlier in the week, they didn't open anymore. So the on-call doctor assumed that my pressure wasn't high because of the ventricle size. That is not true. I've had high pressure often with tiny ventricles. It's called Slit Ventricle Syndrome. I had the most head pain and nausea that I've experience in my life. The pain was beyond the pain scale. It literally felt like I was having contractions in my brain.
The nurses taking care of me that night were fantastic! They were there for me both physically and emotionally. I was terrified to fall asleep that night because the pressure was so incredibly high and I felt certain that if I fell asleep I wouldn't be waking up. They encouraged me to try and sleep, stayed with me whenever they could, and kept giving me my koala bear that has been with me for every surgery since I was two. They also kept encouraging me to go to a happy place. My happiest place ended up being in the hospital room having Isaac Brock singing to me with an acoustic guitar. (Hey a girl can dream right?) That thought was what brought my pressure down the most.
To the ladies that took care of me that night, I thank you from the bottom of my heart. How could I ever forget the support that you gave me that awful night? I literally thought it was going to be my last night one earth and you helped pull me through.
The story does not end here. But it ends for me now. It's difficult typing with blurry vision and a headache. So stay turned for part two tomorrow.
