Friday, July 25, 2014


I think some of the parts of me that were so wounded by our experience when Simon first got sick were fundamentally healed during this last visit in the hospital.  I can't speak for Simon, but I can tell you that he was having such a good time that he didn't want to leave when it was time to get discharged.  I don't know what to call that exactly, except for a shining example of resilience.

Simon first went into the hospital 6 years ago this August 1st.  That night was the closest thing to hell I can possibly imagine.  I have chewed it over in my head so many times, but I have no idea what details I have described and to whom, for there are very few people I would have wanted to burden with the stories when they still felt so raw and unhealed.

I am feeling like it's time to tell some of those stories as we are approaching our 6th anniversary.

On August 1, 2008, it took approximately 9 hours from the time we entered the ER at John Muir until we got to bed 7 in the PICU at Children's Hospital Oakland.  At the time it felt like such an arduous journey just to get into that bed...I had no idea what the next 9 hours would hold.  At about midnight, Laura and I found ourselves in a dimly-lit, curtained-off corner of a big noisy room.  Our area was cram-packed with a very high-tech platform for Simon to lay on, a huge array of monitors, a shitty cushioned fold-out chair/bed and eventually, once they got tired of us sitting on the floor, a huge wooden rocking chair.

We took turns trying to lie down on the chair/bed to get some rest and sitting in the rocking chair holding an oxygen mask up to the face of our panting, sweating, wheezing, wide-eyed infant who sat bolt upright while it got progressively harder and harder for him to breathe.  Our eyes flicked between each other's eyes, his terrified tiny little eyes and the monitors that showed heart and respiration numbers steadily rising as the hours passed.  Every time the nurse came in to re-set the alarm threshold higher to stop the incessant clanging, we'd ask her again what the normal range was, to see how far we were drifting from the landmark.  Every hour, a respiratory therapist would come in and apologetically take a firm grasp of his tiny heel, squeeze it a few times and poke it with a lancet, desperately trying to get a drop of blood into an impossibly thin glass tube so they could check his blood gasses.  At about 2 am, they started bringing tiny heating pads to try to increase the blood flow to the heels as it was getting harder and harder to draw blood.   At about 4 am, he stopped crying when they poked him and simply flinched, working too hard to stay alive to be distracted by something as trivial as a metal spike jabbing into his new flesh.

About once an hour, the child next to us covered in casts, IV poles and monitors would wake up uttering the most god-awful moan, cry out for his mother and start to panic. There would be a flurry of activity, Mom would frantically try to calm him down and he would quiet down until the morphine wore off and they would start again.  This would inevitably happen just as we were either just starting to drift off on the chair/bed or Simon would just start calming down a tiny amount.  Every time the boy started crying out, I would get furious.  I would silently curse him, his nurse, whomever had been driving the car that hit him- I just wanted them all to disappear so that I could just FOCUS, DAMN IT and figure out what the hell I was supposed to do to keep Simon alive.

I have honestly never felt more helpless than I did that night, watching him slide closer and closer to death while a room full of professionals watched us going down.  I was so out of my area of expertise that I totally surrendered to the clinicians, even though our nurse looked more and more worried each time she came in. I didn't know what we were waiting for or what came next but it looked like everyone was just watching to see what was going to happen.

Finally at about 4:45 a.m,. a new respiratory therapist came in to take Simon's blood gasses.  He bent down to get eye level with Simon and stood back up.  " I don't like his color at all.  How long has he been working this hard? Do they know that he looks like this? How long has it been since they last came in?" he asked urgently.  We meekly answered that a nurse had just been in 15 minutes ago and he'd been breathing like that for hours. He quickly took as much blood as he could and left so fast the curtain flapped.

Within 10 minutes, the PICU attending physician appeared and asked to speak with us.  Our sweet nurse, who had been standing at her side, stepped forward to take Simon in her arms to comfort him while we spoke to  the doctor. What the doctor had to say was simple and to the point.  "Your little guy has been working really, really hard for a really long time.  He's basically been running a marathon.  His blood gasses show that he's running out of steam and he's going to poop out unless we help him.  What we want to do is put him on a machine that will help him breathe so he doesn't have to work so hard.  Can you guys agree to that?  We need to do this within the next 15 minutes so I urge you to make your decision quickly so that we can get set up. "  We silently nodded our assent as we processed that her words actually meant they were putting our 4 month old infant on life support.

We went back in to kiss his sweaty forehead, whisper final words to him,  and stumbled into the bright hallway outside the PICU.  Laura crumpled in a heap on the floor, releasing an almost inhuman wail. As I numbly knelt down to hold her, the reception clerk for the department raced towards us with keys jangling in her hands.  She led us to a conference room just down the hall and told us we could stay there for as long as we needed to.  Laura and I sat across from each other at a large conference table and just stared at each other in disbelief.  I'm sure people came in to check on us, but all I remember is that it was almost 9 a.m. before someone came to tell us that he was finally stable enough for us to see him for a few minutes.  They warned us that they had spent most of the last 4 hours trying to get an I.V. in him and that they normally wouldn't let parents see their child in the condition he was in, but they know we had waited a long time.

His tiny 11 pound body lay still like a piece of meat on a big waxy blue paper sheet, an unnatural orangy-brown tint from the Betadine they had swabbed his whole body with as they tried to start an IV again and again.  I tried to take in the 12 pinhole sized marks oozing blood from every tender spot on his body and feel anything besides revulsion when I noticed the plastic butterfly wings of the IV needle coming out of his neck. Somewhere in my brain, I registered relief that he appeared to be breathing peacefully and that the numbers on the monitor were at least 1/3 lower than they had been when we left him.  When I knelt down to kiss his face, the sharp sterile smell of oxygen and plastic tubing and terror greeted me instead of the sweet, milky smell of newborn. We whispered words of love and encouragement over his unconscious body and then left to return to the confinement of the conference room to wait for more news.

About an hour later, with our parents present, we met with Simon's cardiologist for the first time and he gave us as much information as he had about Simon's condition.  All I really remember about that meeting is being told we would be spending at least 3 weeks in the hospital, they don't know any more about cardiomyopathy than they did 50 years ago and he had equal chances of dying, recovering or having a sick heart for the rest of his life.  The posts on this blog tell the story of the rest of those days...

This past Tuesday night,  as I stayed over with Simon  in the hospital after his g-tube removal surgery, I was swimming in flashbacks. Every time the 3 week old baby in the bay next to us woke up (approximately every hour), I was reminded of all the times I sat with Simon in the PICU trying to ignore crying babies while we pretended like everything was normal.  I tried tune out the nurses reporting out to each other at change of shift just outside our bed, unsuccessfully blocking out the details about all our neighbors.  I tried not to think about the hideous way the parents of  another child we were in the pre-op process with treated their child. And I especially tried to tune out the boy across the room who woke up every hour, moaning, crying out in pain and for his mother until there was a flurry of activity and his pain meds hit.  Him, especially him.

I looked over at Simon sleeping peacefully in an adult sized hospital bed, not hooked up to any monitors, and I started to cry.  I lay face down in that horribly uncomfortable chair/bed and cried and cried.   I cried for Laura and Simon and me, for the pain and suffering we endured.  Cried at the realization that things had been so awful in the beginning that my only option was to resent the suffering of a child crushed by thousands of pounds of metal. I cried for the boy crying out that night and for the boy I couldn't hear six years ago. I cried thinking about the way the faces of staff and clinicians we hadn't seen in six years lit up earlier that day and then crumpled when they recognized Simon, stunned by the handsome, tanned, healthy-looking boy he had fought to become.  I cried realizing how far we have come.

I had been feeling so much anxiety about this hospital stay, about having old feelings kicked up and buttons pushed and what I would do with it all.  Something feels settled, healed, calmed. I feel lighter than I have in years. Instead of turning my back on those old ghosts, I finally was able to bring them in close and give them the attention, love and forgiveness they needed to carry on their way. I will always feel sadness and grief about that time in our lives, and I don't know what the future holds, but something feels...filled in is the best way I can describe it.

Viking walking the gauntlet

Amazing Child Life department letting us play with equipment before surgery

Hello?  Anesthesia?

Lemme see if I can see what this is going to look like

Getting settled in to the new bed.
Doctor Simon, the Hug-ologist, saluting

On his 3rd popsicle!

Getting an echocardiogram while we were there

Simon and Dr. Rosenfeld, his cardiologist, aka Dr. Hunkypants

Nothing more healing than cupcake decorating with cousins!

Laura's Mom, our niece Maya and Laura's sister Jen, looking tanned and relaxed!

A PopPop and his grandson (cousin Charlie)

A Mama and her Mama

The Fitch Ladies!

A classy bunch...

Waterfight joy!

If that's not what alive looks like, I don't know what is...


Jeri said...

Oh. My.
I guess there are no words.
Thanks for selflessly sharing--very touching.
Way to go Team Shimmy!

Lauren Rose-Cohen said...

So touched by your reflections.

Annah Elizabeth said...

Beautiful, glorious healing...

Emily Park said...

I've been randomly reading through your blog and each and every post has me crying, laughing, and exclaiming out loud to my computer screen. Thank you for taking time to share your experiences both as they happen and as you are able to revisit these traumatic and also joyful moments. What a hell of a roller coaster ride it is, but I'm so happy to know Simon has graduated from the G-tube and you are all rolling forward...what an incredible team you make.