Photograph by Erin LeBrecque Photography
I want to give you a snapshot of what life is like inside the walls of the pediatric intensive care unit, also known as the PICU (pronounced "pick-cue"). My hope is that this article is as close as you'll ever get to experiencing this tragically sad but surprisingly hopeful environment.
The reason I can speak from a position of authority on the subject is because my wife and I spent several months sleeping on fold-out chairs, showering in public hospital stalls and eating crappy cafeteria food while our 11-week-old son fought for his life after sustaining a head injury under the care of his nanny. I assure you, I would much rather be an expert in water parks or high stakes poker tables or Superbowl stadiums but alas, I drew this card in life.
The first rule of PICU Club is don't look around PICU Club. When you enter the intensive care floor, always look straight ahead until you get to your child's room. The thing about the PICU floor is that patient's rooms are really just fancy glass boxes. Everyone is so vulnerable in these see-through cages. They build them like this so nurses and doctors can easily see inside the room in case one of these young patients need immediate attention, which is a relatively common occurrence. This open design makes you feel like part of some surreal human art exhibit at The Met, except instead of voyeurs taking flash-free photos there are residents and fellows taking detailed notes. The point is, you don't want to invade a family's privacy by accidentally peering into their room so keep your head forward and eyes on the floor.
Personally, I would go out of my way to not even smile as I walked around the unit. I didn't want a family in agony to see someone smugly enjoying life, even if the moment was fleeting. That probably sounds severe, but during the first few weeks at the hospital, I was selfishly and unfairly jealous of anyone who looked carefree and happy. And trust me, jealousy is a powerful emotion in the PICU that can rule your thoughts and drown your rationale.
At first, not smiling wasn't hard at all as I felt completely detached from all positive sensations watching my son lay unconscious and wired up like a science project. To see him during these early days broke our hearts. Even with a perfectly healthy 2-year-old daughter at home, life felt like it was already over. The few friends that visited us were destroyed by the sight of him. When close friends of ours came to visit, who were expecting their second child any day now, we wouldn't let our pregnant friend see Holton because we didn't want her to experience such extreme sadness. It was the right decision. Hell, I don't know how Santa didn't just up and quit after taking this picture.
Photography by Eric Weingrad
That's a hard image to take in. We stared at him like this for what felt like an eternity. But as time went on in the PICU, we began to simply appreciate the fact that he was still with us. He should've been dead but he wasn't. He was still here for us to kiss and touch. To mothers and fathers of healthy children, it may seem odd to want to be in our position, but I know there are thousands upon thousands of grieving parents who would change places with us in a heartbeat. Just to be able to feel their child's forehead again or hold their hand and whisper "I love you" in their ear.
That's what this place does to a parent. It gives them a perspective they wish they never knew. But with that mindset, we began to feel optimistic about things. We actually began to feel lucky. We even began to smile — but only within the confines of our glass cell.
It took about two weeks for the dust to settle in our son Holton's room before doctors were able to get his non-stop seizures to stop. When we had arrived to the hospital on December 19 of last year, we obviously had tunnel vision for our son's recovery. We didn't spend any time looking away from our sweet boy, except when we were with our daughter at home. We just locked onto our son like an eagle diving down on its prey, except we were not trying to eat our little man. Although, he really did look delicious — all fat, hairy and shirtless.
As our son's seizures began to subside and he started to wake from his deep sleep, our razor-sharp attention faltered a bit. I'm sure each hospital is slightly different but at UCLA the walls separating the patient's rooms in intensive care don't offer much in the way of a sound barrier.
“You see and hear things that will simply break you. No way around it.”
During Holton's first six weeks in PICU, he was smack in the middle of everything, which my wife and I loved because we wanted everyone to pay attention to him. I'm talking everyone. If you had scrubs on, chances are I was going to pull you into my son's lair to have you look at something. The downside to being in the thick of it on the PICU floor is that you see and hear things that will simply break you. No way around it.
My wife and I felt the pain, the anguish, the confusion, the anger and the heartache that was being mass-produced in the surrounding rooms. Rogue screams penetrated the thin walls, unfamiliar moans are enhanced by the marble floors and our own quiet sobbing was subtly drowned out by the endless beeping of hospital equipment encircling Holton's bed.
Photograph by Eric Weingrad
On either side of Holton's room was a constant shuffle of all-too-young patients. You can't help but feel an emotional connection to a weeping mother who's breaking down at the bedside of her cancer-stricken daughter. It's merely human instinct to privately mourn for a family who has been forced to decide if continuing life support is the right decision for their child. And you can only feel anger when you find out a little boy's body is rejecting a long-awaited and desperately needed organ transplant. Unfortunately, these aren't hypotheticals but rather things we witnessed during our first week in PICU.
Of course, it wasn't all doom and gloom. It was so great to watch one mother proudly strut around the halls because her 17-year-old son, who seemed to be paralyzed from the neck down after a freak skateboarding accident, was being moved over to "the floor," which is where kids are placed when they are on the mend.
It's amazing what a parent views as a joyous victory. I think most people would see the image of this woman's emaciated son, whose head is being held up by poles and braces, as a devastating loss but not this momma. She couldn't be happier. Her son was "moving on up" as she gleefully told my wife. It made us smile because we wanted that same feeling and she proved it was possible even while her son looked like he would never walk again. Hope in a seemingly hopeless environment.
What I found odd about our time in PICU is that we barely spoke to the other parents. When we passed them in the hall, we just nodded our heads hello and kept walking. This wasn't because we're rude or insensitive but rather we knew, just like us, they needed their own space. We assumed they had enough people in their lives asking, "How are you?" or "Any update?" or "When will he be able to come home?" We didn't want to add to that because sometimes those questions don't have an answer and that's a hard, painful truth to accept.
One night, through the frosted glass door that separated our children's rooms, I overheard a mother weeping while she told her daughter how proud she was of her for fighting this battle. I didn't want to listen but attempting not to would've proven futile due to the thin walls. If I were to have answered the above questions for this unmeasurably strong woman, I'd tell you she was afraid, broken and lost. The update, judging from the amount of crying family members and nurses and doctors outside their glass door, is that there wasn't a lot of time left for their sweet angel. And as far as coming home, I think that's a relative term depending on your religious beliefs, but yes I think that child finally went home that evening.
I wanted to hug this woman and her family but it wasn't my place. I wanted to tell them they've been so heroic and that they should continue to fight but I would've felt like an intruder. I wanted them to know my wife and I knew exactly what they were feeling but, deep down, I knew it wouldn't have helped dry their tears.
Looking back, I wish I said all those things to that child's parents but I was afraid. I was afraid I was looking at my own families future and quite frankly, that was terrifying. So I said nothing.
Photograph by Eric Weingrad
Life in the PICU is not for the faint of heart. The doctors, nurses, caretakers and even custodial workers have an unthinkable responsibility. Most of them go out of their way to never let you see them moved by the daily horrors they encounter. I don't envy them but I'm grateful they're there to keep families like ours pointed in the right direction. I can only assume most of PICU team members go to their cars at the end of their respective shifts and just cry from what they've seen, what they've heard and, most importantly, what they've felt.
It's been almost nine months since my son's injury. He's now home, fighting with every fiber of his being towards making nothing short of a miraculous recovery — and he's sunbathing poolside, too. Don't be fooled by this over-the-top adorable photo, though. Holton has a long road ahead of him. We're confident he'll get to his final destination with his family and loved ones behind the wheel but it must never be forgotten that this miracle journey started in the PICU.
And in case you wanted to know how the young man is doing that broke his neck while skateboarding, I actually ran into him at the hospital back in March. I couldn't believe my eyes. From how things once looked, I thought he'd never stand under his own power again let alone walk around smiling. You can be sure I didn't miss my opportunity to open up and say something this time. I was no longer afraid.
I stopped him dead in his tracks and told him how inspiring he was to my wife and I. He had no idea who I was besides an apparent PICU-stalker but he was more than gracious to meet me, talk to me about his recovery and hear about my son. I had his mom snap this photo of us (left) to celebrate the moment. Since then I've kept in touch with Abiyr, as he and his mother Joya are such a beacon of motivation to us. He recently sent me this photo (right) of him with his mom sans all the poles and braces. Just another miracle kid from the PICU, no big deal.
The pediatric intensive care unit is possibly the saddest place in the world, but it's also a place where the most courageous people on the planet live — and every single one of them are kids.
If this story moved you, then hopefully you'll feel compelled to do something extraordinary for families and children in a PICU near you. It doesn't take much. Send cookies or a masseuse or a creepy clown. Or better yet, send a creepy masseuse clown with cookies.
Just the same, if you'd like to learn more about my son as he fights to overcome TBI, you can follow him on Facebook at The Incredible Holt – Road to Recovery.
Philadelphia 6 ABC Action News covers the 2nd annual benefit walk to raise money and awareness for Holton's Heroes, a charity that serves children and their loved ones affected by post-birth pediatric brain injuries.