Another Hospital Stay, Part 3


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.

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8 Comments

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8 responses to “Another Hospital Stay, Part 3

  1. Here’s hoping you and Michael are home again soon.

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  2. I’m so sorry. Keeping Michael, and you, in my prayers. Sending you hugs.

    Liked by 1 person

  3. Lillian, I’m sorry that you are having such a long and difficult time. All those people around me would drive me crazy, too. I wish you did have a magic wand.

    You and Michael are in my thoughts.

    Liked by 1 person

  4. Kathy Bernal

    Prayer will be your magic wand Lillian. Praying Michael will soon be well and you will soon be home. I would be crazy with all those people around.

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  5. Alex Hurst

    Thanks for the update. I hope Michael recovers soon, so you can all go home to some semblance of normalcy. I can’t even imagine the strain such a long hospital stay would have on a person. I’m generally an upbeat, kind person, but I think at some point, in that situation, I’d break down. Michael is very blessed to have a mother like you. Stay strong.

    Liked by 1 person

  6. Met. Jonah

    You’re in my thoughts and prayers, and Michael especially.

    Like

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