Do You Believe In Miracles?

On Monday we met with Zacchaio's neurologist, Dr. Wyllie, whose recommendation was to cease the discussion about a second surgery, start the anti-epileptic drug Vigabatrin to control his ongoing seizures, and discharge us home. Her intentions were to allow Zacchaio time to grow and develop, and to have him return for his second surgery once he was bigger (greater blood volume equates to a less risky surgery) and his seizures had worsened. At the end of our discussion I was left with a sour taste in my mouth. If we have to start Vigabatrin, why did we remove a quarter of our son's brain? We could have started Vigabatrin before touching him with a scalpel. Why are we toe-dipping in two different pools of epilepsy management? When we set out on our cross-country trek a month and a half ago, our goal was seizure freedom, not seizure betterment. Aidan and I were all in, and stopping now felt like half-assing it.

Zacchaio's neurosurgeon, Dr. Bingaman, was scheduled to meet with us shortly after Dr. Wyllie's departure. He did his usual: dramatic entrance, sarcastic remark, sit down, cross legs, frank conversation. It was as if he had a direct line from my brain to his lips (neurosurgeon's intuition?)...

"Alexis, I know we said we were going to go back in to finish the hemispherectomy if he continued having seizures...

"Well, what Dr. Wyllie was saying was-"

"You're unhappy with what she said. Unfortunately, you were born with the qualities you were born with." Dr. Bingaman's sarcasm at its finest. "You're a fixer by nature and you want to fix him. At the end of the day you want to say you did everything in your power to give him the best chance at developing and leading a seizure-free life."

"Right. And if it proves to be unsuccessful, I-"

"You're prepared to deal with it."

"I'm prepared to deal with it. Because regardless of how this turns out, we're going to be dealing with a whole lot of something for the rest of his life."

There was a longer than expected silence...

"Just to let you know, if I were you I would be doing the same thing."

"Thanks, Dr. Bingaman."

He proceeded to explain the surgery...

"We're going to completely remove whatever is left of his parietal lobe (his sensory and motor cortex).  He's obviously going to be paralyzed on his left side after we remove it. He'll eventually be able to move his shoulder and elbow, but he will have no fine motor movement in his left hand. He'll walk with a noticeable limp for the rest of his life. Back to surgery. I'll trace around the frontal lobe to complete its disconnection but I'll leave the brain tissue in place to reduce the chances of hydrocephalus developing."

"Gee, I was going to ask if you could leave it. Guess we're on the same page?"

"How does Thursday sound?"

"Wow, um. Thursday it is. Hey, might we be able to-"

"Sure. Let's go ahead and do some EEG before Thursday. We'll put it on now and monitor for 2 days? We'll make a final decision on Wednesday and I'll pencil him in the surgical schedule for Thursday. Sound good?"

"Sounds great. That way we can compare-"

"We'll compare it to the post-op EEG we did a week ago. More information. Good?"

"Good."

And that was that.

I've never seen hospital time in such fast motion. Zacchaio's personal EEG tech, Betsy, had electrodes  decorating his scalp within an hour. It was very clear that when Dr. Bingaman issues orders, everyone's ears perk up.

By Tuesday, Zacchaio had been monitored for seizure activity for twenty-four hours. Overnight, Aidan diligently pushed the seizure button every time he witnessed a strange eye movement or behavior. Both of us assumed they would end the EEG monitoring a day early, as we had captured all of the behaviors we had been concerned about over the last few days. When neurology briefly popped their heads in, they asked if we could continue monitoring for one more night. We gladly obliged, though I'm not sure Zacchaio was as thrilled to give them the extra day.

And so after forty-eight hours of monitoring, our epilepsy team walked in. Everyone was in agreement. No surgery.

What? No surgery? I thought we discussed this!

A smile started to form on Dr. Gupta's face.

"Alexis, he hasn't had a single seizure for the last forty-eight hours."

There was a long silence while my eyes widened and awkwardly stared at him.

"Dr. Gupta, are you telling me that after surgery one week ago he was having as many as 400 seizures per day, and now he hasn't had one?!"

"That's what I'm telling you."

"I don't believe you."

"I thought you would say that."

I wish I could say he went on to explain how it was possible, but he couldn't. Aidan and I had been secretly in agreement that we weren't seeing as much abnormal activity in the last few days, but we were too afraid to admit it. We were both determined to be realistic about Zacchaio's condition and couldn't afford to have our hopeful subconscious mislead our neurology team. The intermittent eye blinks, eye glances, and startles we had been seeing in the last few days were definitely different than what we were seeing during Zacchaio's post-operative EEG one week ago, but we feared what that meant.

Dr. Gupta continued to explain that the behaviors we were witnessing are Zacchaio acclimating to his new brain (or lack thereof) and his new vision. Nothing he was doing was correlating to anything abnormal on the EEG. In fact, Dr. Wyllie kindly chimed in that while Zacchaio sleeps, his brain is doing all of the "smart things it should be doing," as in alpha, beta, and delta waves, spindles, etc.

It's a miracle?

I was still skeptical. I asked Dr. Gupta about Zacchaio's interictal spikes (brief electrical discharges). Prior to surgery he was having them regularly, every 3 seconds. After surgery he was having small, intermittent clusters of them. And now? He said they were very infrequent and if he had to quantify them, maybe there was one per hour. He smiled again and reiterated that spikes are not seizures, just brief surges of electrical activity that last less than a second. He went on to say that there is potential for Zacchaio to have these spikes for the rest of his life and remain seizure-free with no concern from neurology.

He said slowly one last time... "He is not having anymore seizures."

I never thought receiving good news would be so challenging. One of the longest, most frightening chapters in our lives just ended, yet somehow in this moment I'm more afraid of the truth on subsequent pages.

Whenever I fell to my knees and prayed for our Zacchaio, I never asked for big miracles with little sacrifice. We were, and still are, willing to permanently disable our son for the chance of seizure freedom. I just never imagined God would be this good to us.

Zacchaio's seizure freedom is still not a guarantee. He may seize again in days, months, or years from now. But not today.

Today Zacchaio was supposed to have surgery. Instead Zacchaio brought our family home.

Post-op Days 7-10

We've been riding the status quo wave since Thursday, hence this entry entails a handful of happenings while on this ride that has required an immense amount of patience.

Post-op Day 7

We begin to see intermittent interest in toys!

Post-op Day 8

Three hours of sleep per night. Delirium at its finest.

Post-op Day 9

Zacchaio has remained very resistant to taking food by mouth and whether that is because of nausea, vomiting, or pain related to his incision, we will never know. We have since started continuous feeds through his NG tube and we are happy to report that he is tolerating them with no vomiting!

We also discovered that he would sleep for longer stretches of time when he slept in our hospital bed as opposed to his crib. It's all yours, Your Highness.

After having a check-in with Alkaio back home in California, tears among endless "I miss yous" led us to buy him a one-way flight to Cleveland the next day. Although our family is still not living under the same roof, I forgot how amazing it felt to be living within the same city limits. This morning when Aidan, Alkaio, and I had a family hug we said, "Everyone think of Zacchaio right now so this is a REAL family hug!" And it was perfect.

Post-op Day 10

It seems as if Zacchaio is starting to turn a corner... 

And while I witnessed the sparkle in Zacchaio's eye begin to return, Aidan shared a day full of laughter and joy with our big boy. Balance is feeling really good right now.

Post-op Day 5 & 6

Zacchaio's last couple of days have been riddled with much struggle and few triumphs.

Finding the balance between patience and excessive intervention for Zacchaio's healing has been emotionally draining. As a nurse, I know the mantra: "Intervention begets intervention begets intervention..." Finding the perfect cocktail of supportive therapies has been a horribly disorienting rat race.

Zacchaio excels at getting his needs met, and he very clearly (and loudly!) made it known that we were not adequately managing his pain. In response, we began around the clock Morphine. Although Zacchaio achieved moderate pain relief with the narcotic, it also inadvertently slowed down his bowels (as narcotics do by nature) which led to subsequent constipation and food intolerance. We combatted his slow digestion with three different GI stimulants. Unfortunately his persistent low-grade fevers seem to have negated what progress they had made. He has continued to vomit his milk which puts him at risk for aspiration, and he has continued to vomit his heart medications which has perpetuated his arrythmia. His minimal caloric intake is now preventing his ability to maximize wound healing. In an attempt to break the cycle of negative side effects related to interventions, we recently stopped giving Morphine and switched to Motrin (ibuprofen). The anti-inflammatory and pain-relieving propertiies of Motrin have proven to be very effective for Zacchaio. In breaking one cycle we might have started another, as Motrin is blood-thinning by nature which increases Zacchaio's risk of bleeding which will likely push his surgery to a later date (though this may be what he ultimately needs).

In attempting to support him through his initial recovery, we have created so many more difficulties. I was beginning to feel like I was losing all control. Enter inordinate amounts of carbohydrates and refined sugars. Thank you, Fudge Brownie, for getting me through a difficult time.

For 80% of the day he is visibly uncomfortable. Even with Morphine on board he still whimpers with discomfort from his lacerated temporalis muscle and upset stomach. On rare occassion when he manages to find calm, he opens glazed eyes and stares toward a seemingly insignificant point in space. In a selfish attempt to reassure my soul that our joyful boy still exists within his pain-ridden body, I try to engage him during these peaceful moments. It turns out that the seemingly insignificant point in space he has discovered is his happy place, a place on which he focuses with such vigor so as to forget about the hurt. Who are we to be impatient? Take as long as you need, sweet guy.

Prior to Zacchaio's surgery I subconsciously created an expected post-operative course based on that of others who have had similar surgeries. In the last few days I became disappointed with his somewhat flattened trajectory of healing. 

In needing to find a more productive approach toward his recovery, I am adopting the theory of tabula rasa (blank slate) in hopes of new perspective and opportunities to celebrate even the smallest of his successes.

The first of these successes occured on the morning of Day 5 when I rejoiced with tears. Zacchaio opened his eyes, gazed purposefully into mine, and responded to my greeting with a beaming smile. He said what I needed to hear most; "Mama, I'm still here." For the next few hours he responded to our signature sound effects with smiles and coos. The last time he was this receptive to us was months ago before this whole business of seizures. He remembered. He was really still in there.

On Post-op Day 6 Zacchaio participated in physicial therapy for the first time. Seeing as he was unable to take part in days past due to lethargy and pain, this was another success! Though a bit resistant to start, he embraced his physical therapy as his therapists embraced him. He visually tracked for the first time and reached for his toys with a tentative smile. Atta baby!

Though Zacchaio's seizures continue, we have noticed a surprising decrease in frequency. We don't want to set our expectations too high just yet, but we're obviously happy to see an improvement from his pre-surgical state.

Lastly, we received his post-operative MRI results that revealed nothing unexpected! There was no sign of stroke and no excessive swelling or bleeding present. Phew!

With such little progress made these last couple of days, it would have been easy to fall into despair. Though tears have been shed, the most recent that have fallen from our faces are not because of Zacchaio's struggles... They are because of you.

A sweet 12-year old is celebrating his entrance into his teens and has asked his guests to offer donations toward Zacchaio's journey in lieu of the joy of presents. Dearest friends continue to research and contact foundations on our behalf, inquiring as to how they can further assist with medical costs. Entire high school classrooms have paused in prayer, and prayer circles full of strangers continue to speak our baby boy's name. As you all continue to light candles worldwide, know that you are feeding our souls and Zacchaio's drive to heal. 

We thank God every night for you, our family.

Better days are on the horizon...