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.

Another Hospital Stay, Part 2

by Lillian Csernica on August 1, 2015

I’ve been MIA because I’ve spent most of the past ten days at the hospital with Michael, and most of those days in the ICU.

The Baclofen pump replacement went well.  No redness, swelling, etc. at the incision site.  No problems in the Recovery room.

Then matters started to get complicated.  Instead of sending Michael to the Surgical floor, somebody in his or her infinite wisdom sent him to the Rehab floor.  The reasoning?  The staff on the Surgical floor weren’t as familiar with the Ketogenic Diet, and besides, the kids with Baclofen pumps all go to the Rehab floor.

Michael developed an infection.  Other bad things happened, but let me just say his left lung took a hit.  That’s his most vulnerable area.  His breathing was compromised, and sure enough, it looked like pneumonia.  I don’t want to hear the P-word.  That has been Michael’s #1 enemy for most of his life.

After two days on the Rehab floor, I had a polite, even-tempered, but very firm hissy fit.  Michael needed more aggressive care.  He should be sent to the ICU immediately.  The charge nurse agreed with me and called the ICU.  One of their attending physicians came to evaluate Michael.  The doctor asked me a few key questions about Michael’s history, then told the team of Pediatric M.D.s on the Rehab floor Michael did indeed need to be in the ICU.

This is why I work so hard to be calm and polite when I’m dealing with the medics.  I know when to get angry, and I know when to panic.  I also know how to make these feelings clear without actually taking them out on people such as the R.N.s who are always busting their butts, or the respiratory therapists, or the other People Who Aren’t Doctors.  Oakland Children’s Hospital is a teaching hospital, so there are teams of residents under the supervision of the attending physicians.  They do things a certain way in teaching hospitals, and that’s important to bear in mind.  I really liked the Pediatric residents who took care of Michael.  He’s just a complicated guy and needed what can be done better in the ICU.

Two days ago Michael’s kidneys and liver shut down.  Chris and I were living in absolute terror that Michael would need a liver transplant.  The liver specialist explained the whole evaluation process to us, the waiting list, the length of the surgery, and even what would happen if Michael rejected the transplant or was considered a bad transplant risk.  He would not survive more than a week.

I don’t EVER want to have this kind of conversation with a doctor again.

The good news is Michael is on dialysis right now and that’s helping matters.  His breathing is much better, with less equipment strapped to his face to help him breathe.  The kidneys and liver are amazing organs capable of considerable recovery.  Michael seems to be on his way to getting over all this, but we still have to be cautious.  Another infection, another fever, and all this progress would be lost.

I want to say a loud public thank you to my parish priest, Archpriest Basil Rhodes of St. Nicholas Russian Orthodox Church in Saratoga, CA.  He called a number of priests who reside in or near Oakland.  Fr. Ninos Oshaana was the first to arrive.  He said a molieben over Michael and anointed him with Holy Unction.  Fr. Ninos moved so quickly he got there before Michael was taken into surgery for the implantation of the dialysis catheter.  God bless you, Fr. Ninos!

I go back to the hospital tomorrow, suitcase in hand, to stay there or at the Family House nearby until Michael comes home.  Please keep us in your prayers.