Tag: hospital

Perceptions of Time

A nurse led us into the recovery room, where the first thing that struck me was the stark change in my son’s appearance. His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair. As we rounded the bed, my wife and I froze. There, across our son’s skull, were the sutured incisions, and beneath the skin, the faint, raised outlines of the leads that connected deep into his brain, extending down to the generator implanted in his chest.

We both gasped, instinctively reaching out, trying to bridge the chasm between shock and reassurance.

I don’t know what I was expecting. Maybe nothing could have prepared me for the reality of seeing those physical marks—a visceral reminder of just how serious his condition is. It was more than jarring. It was a harsh collision with the truth that no matter how much we try to normalize life, this—his reality—is never far away.

Seeing him reminded me of the last time he was in a recovery room after having his VNS implanted. The visible signs of that surgery were less intense. However, it was still our little boy sleeping on a bed in front of us who had, only hours earlier, been sedated and opened up on an operating room table, then carefully stitched back up after inserting a few extra parts.

The DBS and the VNS were only two of the many procedures that our son has had at this hospital, the same hospital that saved his life and the same hospital that continues to look for ways to improve it. He’s had almost every type of scan, given gallons of blood, taken piles of pills, received tons of therapy, and otherwise been poked, prodded, and tested in every way possible.

After he woke up, he was moved to the neurology floor, which had been our second home for a long time. Once we settled into his room, a wave of comfort washed away the shock and anxiety of the surgery. With that comfort also came the familiar change in the perception of time.

Time on this floor doesn’t pass the way it does in the outside world. Inside these walls, it feels suspended, each moment stretching out between visits from the doctors, nurses, and support staff. We’d sit on the blue couch that doubled as a bed, gazing through the windows at the city rushing by below. We’d try to fill our time with distractions—phones, TV, bingo—but no amount of distraction makes the intervals between visits any shorter.

Minutes stretched to hours stretched to days as they monitored our son, and we waited our turn for the final scans he needed before we could go home. To our real home, not this second home. To the real world, not this isolated, supportive, comfortable world. To the place where we would now wait, again, for our son to recover and to see if the procedure and the device make a difference.

Looking at the past, at everything that happened to get us to this point, time passed in a flash. In the hospital, in our bubble of comfort and support, time stood still. Looking at the future, waiting for another answer, time stretches out for eternity.

There Is No Blue Wire

We don’t really know how long our son was in status epilepticus.

We had moved to a new city only six months before, around the time when my son had his first seizure. He had his second a few months later, which lit a fuse inside his brain. We started to see more “ticks”. I didn’t think anything about them, at first, because they looked very different from the seizures we saw. But he started having more of them. The fuse was burning and it was quickly reaching the explosives.

In movies, when a hero defuses a bomb, it’s very dramatic. She’s on the radio with the experts who are talking her through the process.

“Take off the cover.”

Our hero unscrews the cover, exposing a spaghetti of wires. “Done,” she says. “I see the wires.”

“Now, “ a voice says through her earpiece, “carefully trace the wires back to their source. You should see a control board with a power source.”

Our hero uses the back of her hand to wipe the sweat from her brow. She squints her eyes as she uses the screwdriver to carefully push wires out of the way to reveal a circuit board with a series of glowing lights.

“Done. I see the board, ” she confirms.

“Ok, coming off the back of the board you should see a red wire and a blue wire. You need to cut the blue wire.”

Our here slowly grabs the wire cutters from her pocket. In her left hand, she uses the screwdriver to push back the wires further. As she starts to weave the wire cutters into position with her right hand, she stops.

In movies, when a hero defuses a bomb, there is a blue wire. In our story, there was no blue wire. The spark ignited. The bomb exploded.

Inside my son’s brain, an uncontrollable chain reaction began and sent electricity coursing through every cell. His body contorted. He was disoriented. He slept. The cycle repeated for days as another team of doctors tried to contain the secondary effects of detonation, like stopping the spread of radiation after Chernobyl.

While the doctors managed to prevent the worst possible outcome, the damage was done both from the seizures and the tactics employed to put out the electrical storm. We’re still dealing with those consequences years later. But our son is here, and he’s happy, and we are grateful.

 

Starting From The Beginning

One of the truths about anyone new coming into our lives today is that they will never know how bad things were. Eventually, anyone that hangs around long enough will hear my son’s story. We will tell them how dark the times were and how sick my son got and how grateful we are to be where we are. But looking at my son today, it’s hard for most people to believe that things were that bad.

That disconnect feels isolating. It’s a reminder that there aren’t many people in our lives from that time. We were largely confined to the hospital after moving to a new city. The only people we knew were the medical staff, but they were transitory. We rarely saw any with regularity. Instead, we repeated my son’s history to every new face we saw. But they moved on and we stayed trapped in our world scared, desperate, and alone in the dark. Every day, every week, every month.

Sometimes, when you tell a story over and over again, it can dull the pain. The repetition has a numbing effect that makes it easier to deal with. But when you’re in the middle of it, that doesn’t work. Instead, it keeps the pain and the fear fresh and present. After months of unrelenting confrontation with our new reality, I wanted it to stop. I wanted one person, just one person, who I felt knew us, knew my son and could understand.

After a long string of random faces, my wish was finally answered. One neurologist started coming back through on rotation. Instead of repeating our son’s entire history each time, we could give her updates. She provided consistency and stability through our endlessly repeating days. I began to feel like I was talking to someone who understood what we were up against. Someone who knew how bad things were. She cared about us. Without those connections, it’s hard to imagine anyone fighting as hard as we were to not go back to that place. But she did. And for the last three years, we’ve had her at our side every step of the way.

Until now.

The woman who in many ways saved my son is leaving. I’m trying to be stoic. I’m trying to be grateful for everything she did for us. I’m trying to be happy for her as she pursues more of a focus on epilepsy because of her experience with my son. I’m trying to think about the many more children she is going to be able to help. But I mostly feel afraid. Afraid to take these next steps without her. Afraid that no one is going to get us or my son like she did. Afraid that no one is going to fight as hard as she did because of how connected she was to our story. When there aren’t many people that can relate to what you are going through, the loss of one is significant.

We’re at one of the best children’s hospitals in the country. Our new neurologist is one of the best in that hospital. But she didn’t see my son at his worst and I’m struggling with whether that matters. Whether she’ll fight as hard as she would if she had seen him back when this all started. Whether she will be personally invested in his outcome. Because I need that. I need his caregivers to have that connection to him. I need them to know and call him by his nickname. I need them to know how important he is. I need them to know who he is. He’s not just a patient, he’s my son.

The thought of having to start over is stirring memories from when this all began. I’m afraid of having to start retelling my son’s story and reliving those dark and fearful days. But I’m also going to miss that light that lifted us from the darkness. I’m going to miss having her at our side.

We tell our son to be brave. To be grateful. To try to find the positive. And I am trying, but right now I just feel scared, and alone, and sad.