5,000 for 5 Years

Have you ever known, before something happened, what it would ultimately mean to you? I know, odd, but once this particular surgery was scheduled for Preston, I knew it would be my worst day.

May 15, 2018

It's a miracle we are even here. Surgery being an option, that is. Just 4 months earlier, the conversation of this surgery only resulted in fatality, or in the best case, would leave Preston paralyzed. He was 16 years old, and everything we had held for certain was no more. But now, we had a chance. The AVM once classified as inoperable, coming in at a colossal Grade 5 level, and what medical professionals referred to as "the beast" had been shrunk to a Grade 4 through angiogram/embolization. He needed a craniotomy for the removal of the AVM. Essentially the right frontal lobe of his brain would be removed, which contained the AVM. I would have thought it would be some fancy maneuver or even the process of cutting out the right frontal lobe that would be the primary concern for risk, but it wasn't. It was the loss of blood. In the months leading up to May 16, the risk of fatality was made clear to us, especially to Preston. Even at the reduced Grade 4 level, the risks were astronomical, but the one that concerned his medical team most was the blood loss he would suffer while under the knife.

It's the night before, and I can't sleep. For hours in the hotel bed all I do is pray. Pray that the next day will not leave me without a brother. I'm exhausted from today. My family and I were up and moving by 3am to make the drive to New Orleans, LA for Preston's 6am MRI at Ochsner Medical Center and later for an angiogram. I had spent my entire day in waiting rooms, but one thing I can be certain of is that it will only pale in comparison to what tomorrow will bring. I drift off for a little over an hour until I awake with a sudden start and a single notion in my mind. Preston.

I don't sleep.

The next morning I feel like a mess. I physically feel sick. Immediately upon entering Preston's room in the Pediatric Intensive Care Unit (PICU), I become lightheaded. Not just like, oh, I feel a little unsteady or dizzy, but like I'm about to hit the floor. The couch is about 7 feet in front of me, and I move with a purpose to reach it. The very last thing I need is to faint in this room and create any distraction from Preston and assuring everything is in order. Preston's room is quite the scene. One would think a person with some level of fame is near with the number of people moving in and out of Preston's room. For starters, he has a team of Respiratory Therapists, emphasis on team. Dr. Valle, Preston's doctor, is there, and he looks like a man on a mission. He is more focused than I've ever seen him, and that's saying a lot. Preston is the only thing on his schedule today. Then there are people whom I have never seen before speaking to my parents about signing documents and measures to be taken during surgery. The one that catches my attention is a woman who is requesting approval to perform regular tests on Preston's nerves during surgery to assure the continuing function of his brain. She notes that we should expect to see small "burn-like" dots on his hands and feet as a result.

I'm still sitting on the couch and working to gain my bearings but they aren't coming as quick as I would like. I'm still feel rather faint. I'm not seated long before my mom says, "Angel Gail, he's going to start getting sleepy," with a tone and facial expression that reads come stand near your brother. I'm embarrassed at her having to tell me that. I should be by his side. I want to be by his side. But I'm also afraid of creating a scene that steals the focus from where it must be. But she's right, the nurse just administered a drug that would put Preston to sleep ahead of his arrival to the operating room. I shakily stand and focus on not allowing my knees to buckle as I reach Preston's side and grip his hospital bed. Tight. I'm his cheerleader. But in this moment, I am coming up short on how I can bring him confidence and give him a reason smile. He has to believe he can live. But he knows it and I know it. This could be it. I squeeze his hand and look around the room. One of the women who is clearly running the show looks just like Cristina Yang from Grey's Anatomy. If you're unfamiliar with Grey's, Cristina is a very talented cardiovascular surgeon on the show. Yes, I know, not neurosurgery, but that's not going to stop me from leaning into Preston's ear and whispering to him. No one can hear us. This is our little moment where I tell him I will see him soon because Cristina Yang is on his team, and he will be just fine.

It's finally time. We are fortunate to have a team of Respiratory Therapists who understand the gravity of this moment for us, and they suggest we walk with them to the elevators. My mom and I each take a side of Preston's bed, and my dad leads the way moving gurneys out of the long hallways as we make the longest walk of my life that isn't long enough. I feel like I'm in the way of some of the Respiratory Therapists, but I don't budge. I will not move from his side. The trip takes us only a few minutes, and when I see the elevator doors at the end of the hall, I feel a sense of panic. As we ultimately reach the elevators and our trip comes to an end, we know we can go no further. My mom and dad have their moments with Preston, and then it's my turn. I lean over the bed and hug him as best I can. He's hardly conscious at this point, but I tell him I love him and will see him soon.

The team then rolls him into the elevator, and as the doors begin to close, my mom lets out a final, "We will be here waiting for you."

The elevator door shut, and my only thought is, was that the last time I see him?

I turn from my parents and walk behind them as we retrace our steps. I don't want them to see me cry. I don't want to talk about my feelings or what we just did. We probably look like a sad and lost crew. Not knowing what to do, we make our way down to the cafeteria, which is good because I have something I need to do. Preston is a foodie, and he has become quite entranced with the grits in the cafeteria. And to his point, this fortunately, isn't your regular hospital food, but rather a restaurant style cafe. Yesterday, he couldn't believe I hadn't had the grits yet and he swore they were the best he's ever had, so much so he wanted to see me experience them for the first time. And so, he commissioned me to video myself when I first tried them in the cafeteria for him to watch after his surgery. I make my plate and make certain I have a good portion of the grits. This is probably the weirdest thing I've done, but I don't care if people watch me video myself trying grits.

They told us we would receive updates from the waiting room periodically and that we could also request updates, so we don't want to stay away from there for too long. We already know we're not going to request updates. We have zero intentions of distracting Dr. Valle from Preston during surgery. We will be taking the route of "no news is good news."

The surgical waiting room is in full swing, full of families and friends of loved ones. I am seated between my parents, in a single row of 3 chairs, and that's when a sick feeling grows in the pit of my stomach. This isn't right. Sitting here now, we are not complete, and if today does not produce the results we so desperately hope for, I know we will never be the same. Preston is the one who brings joy and humor to our family. I've always been the headstrong, success driven one, but he is the one who makes our family fit so perfectly.

We were told to expect anywhere from 15-17 hours for Preston to be in surgery. Possibly longer. We have no place to be, and the hours tend to grow slower as the day progresses. We're scared to leave out of fear of missing a potential update. There's not much to do after you have scrolled through your phone for what feels like a hundred times, and there's nothing new or anything to distract yourself. So I people-watch. I watch people come and go. I watch doctors come to families and provide news that leaves loved ones distraught and weeping. I am terrified that will be me. At one point, a doctor comes to the family seated near me. He reports great success and that they can come back now to see their loved one. The family asks when their loved one will be ready to return home, and the doctor responds that he will be ready by this evening. Envy grows within me. We were told to expect weeks in the hospital after this surgery if everything went perfectly. I want to go home tonight with my loved one.

The day turns to evening and evening to night. The waiting room has slowly dissipated, but now, as 10 pm approaches, my parents and I are the only ones in the waiting room besides the nurse at the desk. But then we receive an update, they are closing. It isn't long before I see Dr. Valle walking briskly through the double doors leading from the ORs to us. I immediately sit forward and try to read his expression before he reaches us. I have to know, but I've never been more terrified of an answer. I feel like I could combust at any moment if I don't hear this news.

Dr. Valle takes a seat on the ottoman directly in front of us, and before he can get a word out, I say, "Is he alive?" He explains to us that yes, Preston made it, but the coming hours would be highly critical and what we should also expect. The surgery was over, but by no means, were we in the clear yet. I feel like the air has found my lungs for the first time today as I thank him. I want to hug him. He tells us if we make our way to the PICU waiting room we can meet Preston as he is returned to his room. We thank him profusely and tell him he needs to go home and sleep. I can't begin to imagine how exhausted he must be.

Preston was under the knife for 10 hours, not counting prep, opening, and closing which puts it closer to 15 hours away from us.

Once again we're in a waiting room, just this time with a different view. We wait for what feels like an hour and then decide to wait by the elevators we believe he arrive in. We continue to wait until finally, the elevator doors in front of us open, and it's the same team of Respiratory Therapists from this morning surrounding Preston, and I lock eyes on him. He looks good. I don't know what I was expecting, but it wasn't this. He still looks like the Preston I hugged this morning, just with the added addition of his head wrapped and a ventilator. We trail behind Preston's bed and make our way inside the PICU. A nurse immediately spots us and tells us we can't come in with a harsh tone. She explains that we must wait for Preston to be settled. I don't like her. If you could see my family and I, we look like we've been beaten down. We look broken. And I get it, you don't want the family in your way as you're settling the patient. But she could have read the room.

We're finally allowed in to see him, and my instinct is to go to his bed and grab his hand. But instead, I stand there motionless. Afraid to touch him because he looks so fragile. I've never seen so many lines and monitors on one patient.

May 2023

The 5-year mark is a significant milestone in Preston's journey. This 5-year milestone will bring another angiogram, to make certain the AVM is gone, and will take place later this summer. When I look back at my worst day, as I called it all those years ago, it feels like a lifetime ago. Yet, in that very instant, I still feel like the girl who wandered the hospital halls, not knowing where to go or what to do with myself.

When I think back to May 16, 2018, and look at Preston today, part of me wonders who the hero's in disguise are that donated their blood so my brother could live. For something as momentous as the 5-year anniversary of the surgery such as this, I knew we needed to do something big. Something exciting. But at it's essence, something to pay it forward.

One thing about serving as an Ambassador to Mississippi Blood Services (MBS) is that they are

always willing, more accurately thrilled, to go big with you. The always brilliant, Brittany Mitchell, of MBS has been my lifeline and brainstorm partner since I began working with MBS, and this goal is no different. I knew we had something when Brittany said, "Why not just go big. It will be a considerable swing to reach, but think about the number of Mississippi patients we will go on to save in a matter of 31 days." And so that's what we did. The Hero In Disguise campaign was born with a goal of rallying 5,000 blood donors to save as many as 15,000 lives during the month blood donors were the hero's in disguise for Preston. From participating in media promotions, creating marketing content to spread this message, and visiting blood drives, ultimately, my favorite aspect of this month has been serving, first the first time, as the chairperson of a blood drive!

Preston most needed blood 5 years ago, but every 2 seconds, someone needs it. With those statistics, we all know someone or will know someone who will need blood. When you roll up your sleeve to give, you touch the lives of more than just the patient, but of every person who loves them. We may not know who Preston's blood donors were, but they will always be my Hero In Disguise.

To be a Hero In Disguise for a Mississippi patient you can find a donation site near you here