Tag: hospital

Patterns

I sat in the chair at the side of my goddaughter’s bed in the hospital. She had major surgery a few days prior and was recovering in the intensive care unit.

As she slept, her body continued the healing process, connected through tubes and wires to various machines delivering her medicine and monitoring her progress. A screen displayed her heart rate and breathing rate with regular peaks and valleys of rigid blue and green lines. Rhythmic tones broke through the muffled sounds of the hallway outside.

There is something familiar about the screens and the sounds of a hospital room. With my son, we’ve spent months at a time in the hospital. Eventually, the sounds faded into the background, like living near a highway or railroad for too long. It is then the absence of those sounds that I notice.

I stared at the screen and watched the lines move left to right before starting again on the left and overwriting the evidence of the past. At times, the lines perfectly overlapped the pattern of the one before. At other times, the peaks were slightly shifted forward and gave the appearance of a wave being animated to the left.

I watched one of the many intravenous drips. Three drops. Then another three. Then three. Then four. Three. Three. Three. Four. Every fourth cycle, the pattern would change to three, three, four before starting the original sequence again.

Observing these patterns was soothing. It made me feel like she was safe. It made me feel that the universe was continuing in an orderly fashion with every molecule and atom precisely in its expected state and that the cells in her body were repairing the intrusion of the surgeon’s instruments.

The patterns represent order after chaos, stability after uncertainty, and calm after a storm. They bring a sense of control. They bring peace.

As welcome as this feeling was, I didn’t expect to find myself experiencing it again. I thought the first time I felt it, after the doctors were finally able to lift my son from status and stabilize him when we thought we might lose him, would be the only time. I remember sitting in the dark hospital room without the constant flow of doctors, nurses, and therapists and letting out a breath of relief. It was probably the first deep breath I had taken in months.

I would feel that feeling again many times as my son’s condition proved challenging to manage, and we found ourselves back on the neurology floor of the children’s hospital. Each stay started in a panicked attempt to wrestle back control from his seizures, and each stay ended with another deep breath and the thought that we had gone through an ordeal for the last time.

But there is no last time for us. Whether it’s from surgeries or complications for our son, for my aging parents after a stroke or a fall, or for our goddaughter as she attempts to find a way forward to better health, we will always find ourselves back in the hospital, surrounded by the monitors and sounds.

When we find ourselves there, listening to the sounds of the machines, we will seek out the moments of calm, stability, and peace that come from the comforting presence of these patterns. While we can never know what will happen next and have little control over the outcome, we can choose how we experience it.

As I sat beside my goddaughter, I chose to embrace that peace.

Because in that moment, it was enough.

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.