by Lillian Csernica on August 19, 2015
Hello again. I’m coming to you from the Parent Resource Center at the UCSF Benioff Children’s Hospital, Oakland. My son Michael is in the ICU here, and has been for the better part of a month.
Michael’s health has improved in a few areas, but he is still on dialysis. That’s the big hurdle at this point.
People keep telling me to be sure to take care of myself. I eat. I take showers here at the hospital or at the Family House around the corner. I do my laundry. I try to sleep, but in the ICU with its constant lights and endless alarms from pumps and monitors and other equipment, that’s not easy. I’m sure I’ll be having auditory hallucinations for at least a week after we go home.
Whenever that finally happens.
This hospital is a city unto itself, a city that never sleeps. I could tell you a lot of entertaining and even funny stories about people I’ve met here and memorable moments that have occurred. That will have to wait for a time when I’m rested and capable of clever wordplay.
Please pray for Michael. We had to take him off the ketogenic diet for the sake of treating larger issues. That means his seizure patterns have changed, so I have to watch him like a hawk in order to track his new baseline behavior. Maintaining a state of hypervigilance is exhausting. Yes, the nurses are there, but I’m the one who knows Michael the best. I have 19 years of experience with his nonverbal forms of communication.
I’m surrounded by people all the time here, which is very hard on me. I’m a writer, so I’m used to being alone for most of my day. There’s a certain relentless cheerfulness that’s an essential part of hospital culture. That’s a real strain too, especially when I’m frightened and frustrated and angry and feeling powerless.
One of the residents came by to check on Michael and asked me if I had any questions. “Do you have a magic wand?” I asked. We both laughed, but it gets to that point. I just want my son to get past this and come home.
Thank you all for your kind comments and support.