Routine Chaos

by Lillian Csernica on November 5, 2015

Michael and I are back in the UCSF Benioff Children’s Hospital Oakland.  On Monday Michael’s R.N. noticed some swelling around his Baclofen pump.  By evening a redness had developed.  I called the surgeon, who told us to come to his Oakland office by 8 a.m. the following morning.  We did, and Dr. Sun made space in his surgery schedule for Michael.  That was a very good thing, because by then the pump area had gone all hot, red, and shiny.  That meant infection.

Both the Baclofen pump and the catheter leading to Michael’s spinal column have been removed.  The infection is being treated with antibiotics.  Another problem is figuring out just how much Baclofen Michael must now receive via his G tube.  That means Michael has to deal with at least some degree of Baclofen withdrawal, which is very unpleasant.

So Michael is back in the PICU.  On the plus side, many of the R.N.s are familiar with him thanks to our spending most of the summer here.  The social workers got me a room in the Family House right away, so I have somewhere comfortable to eat, sleep, and shower.  I’m just happy we got Michael to the doctor in time.  The last thing Michael needs is to become septic.  That led to organ failure last time, so we cannot risk having that happen again.

Keep us in your prayers, folks.  It’s just one day at a time until we’re out of here.

Shift Change at the Doctor’s Office

by Lillian Csernica on June 5, 2015

http://www.cartoonstock.com

My son Michael is 19 now.  Still a teenager, although he is legally an adult.  Last year my husband and I had to file the appropriate papers and meet with the state officials who oversee the process of the appointment of a legal guardian for medically fragile, nonverbal people such as my son.  We are now not just his parents but his legal guardians as well.

That process brought home to me the fact that my son is moving on.  I have lived most of my adult life in the world of pediatric medical care.  Hospitals, doctors, nurses, therapists, caseworkers, counselors, and the vendors for all the equipment and supplies.  Bright colors, scrubs with cartoon characters, aquariums in the waiting rooms.  Environments meant to soothe and entertain children who are facing the frightening prospect of yet another doctor visit.

Yesterday my husband and I took Michael to the Oakland Children’s Hospital.  That’s a two hour drive, and our appointment was in the afternoon, so my husband had to take the day off from work.  “Family medical leave” is the category, rather than burning a vacation day.  Finding parking for our van was a real problem because the van’s roof is higher than the parking structure clearance.  We made it to the doctor’s office on time, but only because we know enough to leave a wide margin of extra time for traffic and the whole parking issue.

My son has a Baclofen pump, which is a medication pump implanted in his abdomen with a catheter than runs under the skin around his ribs to his spinal column.  Baclofen helps ease the spasticity in his muscles due to the cerebral palsy.  The battery in the pump is nearing the end of its charge, so it’s time to schedule the replacement surgery.  When the pump was implanted, I stayed with Michael for the five days he was in the hospital.  The replacement surgery is much simpler, so his stay won’t be as long.  Every surgery has its risks, but this doctor is a recognized expert in the procedure.

What disturbed me the most about this appointment happened when the doctor pointed out that soon Michael would need to see a doctor in this same field of medicine who treats adults.  On one hand, this isn’t a cause for anxiety because it makes perfect sense.  Our present surgeon is a specialist in pediatric cases.  My son has almost reached the legal drinking age.  Of course he would no longer see a children’s doctor.

On the other hand, as this thought sank in, I realized that the same will be true for all of Michael’s specialists:

The pediatrician.

The neurologist.

The gastroenterologist.

The pulmonologist.

The ophthamologist.

The orthopedic surgeon who put the Harrington rods in to correct Michael’s scoliosis.

Each of these doctors represents almost twenty years of expertise in the treatment of my son’s particular combination of medical problems.  The idea of having to leave the team that has helped us keep Michael healthy and strong through so many crises really upsets me.  No doubt we will be referred to doctors in whom our current team has confidence, but still.  Reading Michael’s chart in the context of one particular aspect of his care will not give each of these new specialists a real grasp of the complexity of Michael’s circumstances.

So much about the future frightens me.  Climate change.  Water rationing.  The increasing frequency of earthquakes (I live in California).  Making sure we have everything in place to provide both of my sons with a safe, healthy adulthood.  The movie “San Andreas” just opened.  I can’t go see it, no matter how good the reviews say it is.  I know that at some point I will freak out and have to leave the theater.

New doctors.  New names, new faces, new locations, new phone numbers, new logistics.  Finding out how they communicate, if they’re willing to listen, how much they’re willing to let me participate in planning Michael’s care.  We’ve been very fortunate with the pediatric physicians we’ve known.  People who go into pediatric medicine generally like children and make an effort to be pleasant and nonthreatening.  As we move into the world of adult care, where we’re all expected to act like “grown-ups,” I wonder about the people who will become responsible for maintaining Michael’s health.

Light That Candle

by Lillian Csernica on August 16, 2014

It has been a long and difficult week all over the world.  So many losses.  So much upheaval.  I’ve seen a lot of information out there about depression and how to cope with it.  I’ve seen a lot of really stupid remarks by people who have no idea what it’s like to live with the big Black Dog day in and day out, to go to sleep (if you can) with the Black Dog sitting on your chest and then wake up to it gnawing on your heart.

One suggestion I’ve heard several times is to go do something for other people.  Get out of your own head, away from your own life, and help somebody who needs it.  You could make all the difference.  With that in mind, I’d like to share seven events from my life, seven moments where the kindness of strangers made a huge difference to the suffering I was enduring at that time.

http://www.kidzgoodies.com

1) When I was ten years old, I had to have surgery to remove the birthmark on the right side of my rib cage.  I don’t remember where the hospital was, but I do remember it was a long way from home.  In those days parents weren’t allowed to stay in the same hospital room with their children.  That meant my mother had to get a hotel room down the road.  Fortunately, I could see the hotel’s sign from the window of the my hospital ward.  Even so, I was alone, I was scared, and a bunch of strangers were about to wheel me into an operating room so the doctor could cut off a chunk of my skin.  There was another girl in the ward.  She was pretty, with long blonde braids.  I don’t know what happened to her, but her jaw was broken and it had to be wired shut.  She couldn’t talk, right?  The night before my surgery I stood there at the window crying.  I wanted my mother and I wanted to go home.  The blonde girl stood next to me, put her arm around me, and leaned her head on my shoulder.  She let me know I was not alone.

http://www.theconsciouslife.com

2) One Halloween when I was in high school a good friend of mine told me that if we dressed up in costume, we could get in to see “The Rocky Horror Picture Show” for free down at a theater near the beach.  So we got dressed up and off we went.  For some reason my friend got his wires crossed.  There was no such offer.  By then it was too late to do much else.  As we stood there, disappointed and trying to salvage the evening, a woman who was standing in the theater lobby walked over and put money on the ticket counter.  All she said was, “You’re in!”  We thanked her up one side and down the other.  I had never seen the movie, so that was quite a memorable Halloween.  This was not a terribly serious situation, but even so, a total stranger stepped up and did something generous and kind.

http://www.illiterateinfant.com

3) When I was in the hospital on bedrest before Michael had to be delivered early, there were three perinatologists on rotation in that hospital.  The one I liked even before he spotted the problem and had me admitted to the hospital immediately.  The second one I don’t remember all that well.  The third doctor was one of those tall, aloof, distinguished men who may be brilliant at medicine but lack something when it comes to their bedside manner.  Once it became clear that I would have to stay in the hospital until a) Michael reached a safe length of time in utero, or b) the crisis came and he had to be delivered, I had to resign myself to the long haul.  Chris had brought some icons, including the one of my patron saint, St. Irene of Chrysovolantou.  The third doctor came into my hospital room one afternoon.  Now that in itself was odd, because “morning rounds” happen in the morning, right?  The doctor had brought me this big beautiful coffee table book.  It was full of gorgeous photographs of the work of Faberge, who is famous for the jeweled Easter eggs made for the Russian royal family.  It’s funny how you believe your impressions of people.  I never would have expected such a gesture from this doctor.  And yet, he offered me the book, making a sympathetic comment about all the time on my hands and how he’d noticed my icons and thought I might enjoy the book.  One of my nurses let me know it was the doctor’s own personal book, too, not something from the hospital library.

http://www.candlefind.com

4) My son Michael’s birthday falls in late April.  Depending on how things work out on the Old Calendar, Russian Easter will happen right around then too.  We’ve often celebrated Michael’s birthday as part of the big annual open house held by his godmother (when she was still with us) and her husband.  His godmother would make a cake for Michael and we’d sing “Happy Birthday” to him.  A lot of people came to this open house, as they continue to do every year.  On the day I’m thinking of, a man was out in the backyard with the rest of us watching us give Michael his cake.  Later the man came up to me and handed me a twenty dollar bill.  He wanted me to get something for Michael.  I thanked him and assured him I would.  People want to help Michael.  They want to do whatever they can to make his life better or easier.  I didn’t know this man, and I will probably never meet him again.  I will always remember him for his burst of compassion for my son.

5) One evening a friend of mine who lived up in the East Bay came down for one of his rare visits.  He’d borrowed his father’s Porsche.  We went out to dinner and I brought Michael with us.  (John wasn’t around yet.)  We didn’t go very far from home, and we had a good time at the restaurant.  My friend held Michael while I ate my dinner.  Being a young man, he didn’t have all that much experience with babies, so this was an adventure for him.  Unfortunately, when we were ready to go home, the car wouldn’t start.  From there it was one thing after another until I could get ahold of Chris and have him pick us up.  The point of this story is that we were parked next to a KMart that had an enclosed area before you entered the actual store.  It was getting later and colder, so I sat in there with Michael while my friend tried to get the car working.  The staff of KMart were getting ready to close, but they were very kind.  This was back before I had a cell phone, so they let me call Chris, then offered me whatever blankets or baby supplies I needed for Michael.  At this point I was starting to get really upset, worrying over Michael, so their concern and assistance meant just that much more to me.

http://www.dreamstime.com

 

6) Now this story happened not too long ago.  I was meeting my Japanese teacher in a local coffee shop.  I’d been rushing around all day getting things done so I could meet her in time.  I had made a mental note about my pocket money, but somehow I got hung up on an earlier version of events and forgot giving some cash to John.  When I went to the cashier to pay for my drink, I suddenly discovered I had no money.  I was so embarrassed.  I didn’t know what to do.  I didn’t want to impose on my teacher.  The young lady behind the counter took pity on my confusion and told me not to worry about it.  There was enough in the tip jar to cover it.  How kind of her!  She didn’t have to do that.  My lesson started on time with no undue awkwardness.  I’ve been back to that coffee shop more than once, and I’m a heavy tipper!

http://www.hossit.com

7) In Santa Cruz there is a wonderful street named Pacific Avenue.  If you want to be formal about it, it’s the Pacific Garden Mall.  Time and time again I’ve gone there with my mother, my sister, my husband, my son John.  I’ve gone Christmas shopping there with my best friends.  I once ran through a torrential rainstorm there and bought a painting for two dollars from a UCSC student who spoke French.  I’ve given money to street musicians and talked to the man who makes animal balloons outside the candy store and I spent a lot of time in the Borders when it was still there.  Aside from an international airport, Pacific Avenue is the best place I’ve found for people-watching, especially on a bright Sunday afternoon.  You never know what you’re going to see, and I mean that.  No matter how bad things feel, no matter how dark it’s gotten inside me, if I hang out on Pacific Avenue for a while, something will happen to make me feel better.  And so I salute all of the people, the shopkeepers and sales clerks and food service folks and the entertainers and the tourists from all corners of the globe.

If you ever get the chance to light that candle instead of cursing the darkness, take it.  Speaking as someone who has been in desperate need of a little light, I can assure you that a single candle flame can make all the difference in the world.  From that little blonde girl in the hospital with me to that doctor whose human side I got to see, there have been people out there kind enough to light my way and keep me going despite all the depression, the grief, the trauma, and the pain I’ve endured.

God bless you.  Every single one of you.  You don’t know it, but you may have saved my life.