AVM (Arteriovenous Malformation) and How it Changed Our Lives

Three letters: AVM. Those three letters were the reason the last five days of my life were spent like this.

Last Wednesday, I was standing in line to enter a military spouse’s conference, when I received a phone call that nearly stopped my heart. My baby nephew, still a toddler, was in the hospital undergoing emergency brain surgery. New York City never felt so far away. As I was rushing out of the event in tears, I phoned the Soldier, “I need to get home.” AVM, Arteriovenous Malformation, had rocked our family to the core and I had no idea what it was.

This is David Caleb- my nephew. I’ll never see him any other way than this. He can be forty years old with a mortgage, a wife, two kids, and a dog named Spot, and I will still picture him this way. One of the downsides of military life is that I’ve had to get the first glimpse of my niece and nephew this way. I cut my first nephew, Tony’s, umbilical cord. My niece, Janelle, was born two weeks after we landed in Germany. David Caleb was born a year after we arrived here in Texas. It’s hard missing those amazing milestones in life, but we make do.

David Caleb is the youngest of my sister, Tasaly’s, children. He was a “late arrival”, if you will. David was born fourteen years after my niece, so, for Tasaly, it was almost like starting over again. This age gap between David and his sister was very much unlike his mother and I, since there’s only sixteen months between the two of us. Nevertheless, his birth was a blessing.

My older sister, Tas (as everyone in our family calls her), is the fifth person in our family to be diagnosed with Multiple Sclerosis. I was the fourth. We’re alike in so many ways that we’ve always been mistaken for twins. As with most families, a host of things caused us to grow apart as we grew older. There have been times where we’ve gone months without speaking to each other. Not something either one of us are proud of, but it’s our truth. It seems to me that crisis was what always brought us together again.

This wasn’t one of those periods, however. We didn’t need, or want, this crisis to intervene.

David Caleb was fine one minute. Fussing at our aunt Mary, his great aunt, because she changed her mind about going to the bank; he knew that going to the bank meant his getting a lollipop from the teller. Shortly after being put down to nap he started vomiting; the next minute, he was limp in her arms having lost consciousness. If you know anything of New York City, and the Bronx in particular, you know that no one gets anywhere in two minutes. That day the ambulance did. To this day we credit our aunt, David Caleb’s caregiver, for knowing him so well. She knew his behavior had changed instantaneously and was proactive in getting him the medical attention he so desperately needed.

David was rushed to Jacobi hospital, given a CT scan, and was diagnosed with a ruptured brain AVM, or Arteriovenous Malformation. He was immediately prepped for a craniectomy (removing a piece of his skull) to stop the bleed and relieve the pressure the swelling was causing to his brain. The neurosurgeon who performed the surgery, Dr. Nrupen Baxi, was spectacular in his assessment and decision to perform the surgery. Multiple doctors later said his split-second decision gave our boy a fighting chance.

But, I was still stuck in Texas at this point. My aunt called me and had the social worker explain all of this to me over the phone. I knew I needed to be with, and support, my sister, and that meant getting to the Bronx as soon as I could. One of the issues I was  faced with  was cancelling flights I had already scheduled to attend the Indulge Food Blogger’s Conference in LA later that week. At this point, Hector had arrived and went into full-on Combat Support Hospital mode. He walked me through changing flights, reserving rental cars, and packing. My brain just wouldn’t function on its own. Once everything had been scheduled for me to arrive in NYC by noon the following day, I set about learning what AVM is.

This is my David’s brain- post craniectomy. The large black spot is the blood clot that resulted from the bleed. Obviously, the whole image should be gray, the color of the rest of the brain. The culprit here is that little bundle of gray within the black spot, poking up at the bottom. That is his AVM. According to the Mayo Clinic an AVM is, “A tangle of abnormal blood vessels connecting arteries and veins in the brain.” A brain AVM disrupts the vital process of the arteries (taking oxygen-rich blood from the heart to the brain) and the veins (carrying the oxygen-depleted blood back to the lungs and heart). My nephew was born with his AVM and it had ruptured, caused his brain bleed, and was now threatening his life.

Having read that, I was all the more desperate to reach him and my sister. As a mother, I couldn’t imagine the pain and uncertainty she was suffering. As her sister, who battled a similar demon with my brain aneurysm, I wanted to offer words of comfort and wisdom. Wednesday morning couldn’t come soon enough. I still hadn’t spoken to my sister through all of this and I was desperate to hear her voice and reassure her. She was finally able to call at one AM. When I picked up and said hello, she just cried. I let her. “Just hold on,” was all I told her.

Just hold on.

I arrived at the airport and drove straight to the hospital. When I walked into the family waiting room of the pediatric ICU, my sister and David, Sr., my brother-in-law, were confused. David asked, “Where did you come from?” I told him, “The sky.” Because, well, I technically did come from the sky. When I walked into my nephew’s room, I was faced with my worst nightmare.

Being strong sucks, period.

I wanted to grab him, take all of those wires and tubes off of him, and tell him to go play. His eyes; I just needed to see his eyes. But since he was heavily sedated, I couldn’t. I knew what was going on, and I knew why. Being married to a medical professional for almost twenty years and having extensive medical history gives you a weird, second-hand knowledge. But, I didn’t like this. This isn’t how my nephew is supposed to look. This was, however, our new reality. So, I settled in for the next five days.

The first order of business was to hear the plan for our baby. Tas and David explained to me that an angiogram had revealed only one AVM. Surgery was scheduled for Friday to remove it by going through the blood clot (which would also be removed). Oddly enough, we were thankful for that clot since they could use it to get to the AVM, avoiding any brain tissue in the process. How well would this baby be able to handle a second brain surgery in less than a week, was the question looming over us.

Dr. Baxi arrived and gave us the rundown. He was going to be on the surgical team headed up by Dr. Eugene Flamm. Dr. Flamm has been a neurosurgeon for fifty-six years! He specializes in, and teaches other neurosurgeons about, AVM’s. To say God was working to comfort us in this process is an understatement. We knew baby David was not only in good hands, he was in capable and wise hands.

Friday’s surgery arrived and went off without a hitch. I prayed while my sister tried to nap. At one point, I crawled onto the twin size bed with her and it felt like we were kids again. We giggled and “pretended” to be asleep whenever the nurse would come in. It was such a sweet moment between me and the person who knows me better than anyone else on the planet. I needed that, and I think she did too.

Once the surgery was over, Dr. Flamm reported that he felt they got everything out that he wanted to get out, but that the follow-up CT scan (scheduled later that evening) and angiogram (scheduled for the following Monday) would tell them all. In the meantime, we waited- and prayed.

 Our days were spent drifting between David’s bedside and the family lounge. This was our home now. Our lunches and dinners were eaten in the lounge as we attempted to feign some sort of normalcy.

Do you want to find a deeper appreciation for everything in life? Go sit in the family lounge of a pediatric critical care unit.

I spoke with women from Ghana, the Dominican Republic, the United States, and China. They were all different shades, spoke different languages, and all were suffering. We hugged one another, prayed with each other, and cried together. I watched as one woman screamed out when the doctors had to revive her eight-month-old baby with chest compressions. We prayed as another cried quietly when nurses called for a “crash cart” to bring her ten-month-old back to life. It’s not supposed to be this way and, yet, it was. I desperately wanted to hug my twins in those moments.

The one thing that was always present was the conversation of faith. These women would console each other by praying over one another and invoking the name of God whenever another needed encouragement. As a Christian, I know, and believe in, the power of prayer. But, I saw it walked out in that family lounge on the tenth floor. How could a woman, who was suffering and uncertain her child would survive the night, pray for others in her time of distress? It was nothing short of selflessness. I learned many lessons from those women in that little room- many. I also learned that the presence and peace of God transcends pain and doubt.

And laughter helps. You have to laugh.

Between the two of us, Tas is the light-hearted one, as shown above. She’s giggling about the container filled with cake slices and cookies that I’d brought from Bainbridge Bakery in Bedford Park. Like, she’s legit excited about the cakes she’s about to try. Meanwhile, I’m the more serious of the two of us. My face says it all, “You’re actually hyped to try this mediocre cake?!?” We laughed often and I think it alleviated a lot of the emotions we were trying to sort through.

A lot of laughter surrounded my brother-in-law and me, especially. David was a rockstar at being my sister’s strength and protector. But he thinks he’s on to something completely insane. To make a long story short, he thinks I’m a spy. It made for a lot of interesting conversation. But it also did a very good job of taking our minds off of the uncertainty we were all feeling.

I walked into see my baby a few hours after his surgery and spent time just touching him. If there’s one thing I’ve learned after caring for my mother for five years- it’s the importance of touch. My mother was dying from complications due to her Multiple Sclerosis and people often felt intimidated by her appearance. She was frail and thin. They would stare at her and cry, but few ever touched her. Whenever Hector, the twins, or I would go near her, we made sure to caress her hair or rub her hands. Her blood pressure would drop and her heart rate would even out. She was calmed when we touched her. David had been lying in that bed for a while so I thought it valuable to touch him and exercise him, which is what I did.

What I really wanted to do was climb into bed and cuddle with him. But “Grandma Sue” was there. Oh, Grandma Sue! “Grandma Sue’s” real name is Sarah. I’m still lost on how we came to call her Grandma Sue, or Sue, but we did. She is David’s nurse, bodyguard, confident, and friend. A member of the family, in short. I have no words to describe how much I love this woman who, before last Wednesday, I had no idea even existed. The way she cares for my nephew as a human being touched my heart. She speaks to him as though he were wide awake and touches him so tenderly that you can’t help but be moved. She’s retiring in June and we’re trying to bribe her to stay with us forever. I guess “a guardian angel walking this earth” is the best way to explain her.

You often forget the human side of medical professionals in situations like these. I figured Sue was a machine of a nurse until David grasped her fingers unexpectedly. In spite of being sedated, this little soldier was fighting to join the voices he was hearing all around him. He lifted his hand in spite of the sedation and when Sue told him to squeeze her fingers if he needed something he did. I watched the shock on Sue’s face turn into thanking and praising Jesus…that was before I buried my face in my sweater and praised Jesus through my own tears.

And there were other nurses: Bea and Maureen, the night nurses, and Dorshay, another day nurse…who were all breaths of fresh air. The way they cared for David while I was there was just so comforting to me, Tas, David and David Caleb. They advocated for him when they knew he was in distress- Dorshay to the point of arguing with a resident (whom we’ve dubbed “90210”-she was so aloof and uncaring), when she knew David was struggling to breathe. Bea held me tight the last night of my visit when she saw me finally break down at the thought of leaving my sister, my brother-in-law, and David. Words can’t explain my gratitude for them. There’s not enough money in the world to compensate them for their authentic, loving care of our precious David.

We had already begun to see evidence of God’s hand in David’s circumstances on the day before I was due to return home. I walked in to his room to see his entire beautiful face. His bandages were removed! The CT scan results were unremarkable which meant no news was good news. I knew he was on the mend, but it was still going to be difficult to leave this angel.

What had I learned in the last five days of staying by this munchkin’s side? A few things:

Family is a powerful tool during crisis

Like I confessed earlier, my sister and I have lost touch more times than I’m proud to admit. Thankfully, we’ve been more intentional about our relationship in recent years. This crisis brought us even closer. Could we have done without this prompt in particular? Absolutely. But it’s our new reality. I was on a plane in less than twenty-four hours because I needed her, and I knew she needed me.

In addition to Tas and David’s extended families, there were so many friends and distant family members that showed up that we almost got kicked off of the ward a few times. David and Tas need only look around to see they weren’t alone. That made leaving a bit better…but not easier.

Life is fleeting

It sounds cliche, but it’s true. One minute is all it takes for your world to be rocked to its core. I’ve seen this happen more times than I’d like as military spouse. My friends have lost their husbands in a blink of an eye. David Caleb has taught me that life needs to be lived full on. He’s reinforced that life isn’t made for working, deadlines, or stress. Life is meant to be lived.

You must be your (or your child’s) strongest advocate

I mentioned before that David had a moment where his vitals were all amuck. His nurse, Dorshay, attempted to find the issue and when she did she contacted the “90210 Resident”. The resident dismissed Dorshay’s opinion and, in a very narcissistic way, blew off the concern my sister had. Dorshay and Tas persisted and, in the end, the resident was proved wrong by the Fellow. The issue was addressed and David was finally able to relax.

Without the advocacy of Tas and Dorshay, God knows what would’ve happened. Always speak up when it comes to your medical care. You know yourself better than a doctor who’s just met you. Ask questions when you’re uncertain, or if you don’t understand something. Never be afraid to speak out.

Angels are among us

Be they nurses, fellow moms-in-waiting, or the surgeons- there are glimpses of God’s mercy everywhere we turn. Learn to recognize them and cherish them.

Hug your family

…every chance you get. I won’t leave the twins alone, so I know they’re annoyed. Don’t really care, though, so there’s that. My sister never expected to be signing over permission for doctors to perform emergency brain surgery on her son when she left for jury duty that morning. But, that’s how she ended her day last Tuesday. Hug your family and tell them you love them so you will not regret anything about your last encounter.

Prayer works.

The road ahead is long

The damage done by David Caleb’s bleed is still unknown. We’ve been told he could come out of this blind, unable to walk- any number of things. Tas and David will have to face the reality that their lives will never be the same. Knowing that your once vibrant, energetic son may never be the same is a tough pill to swallow. They have tons of support and love, but love and support don’t pay bills. There are a lot of variables which we, as a family, have to face to be there for them both practically and emotionally. But, we’ll do it. With prayer, faith, and sheer grit. Just like we’ve been doing since this journey began. Just like David Caleb has taught us.

My lesson

So why, on a food blog, do I share such an emotional story? Because writing about food when my nephew is fighting for his life is a bit…well…stupid. This blog is about me, my recipes mostly, yes, but beyond that I’m a human being who has to deal with life. My sister is my life. My family is my life. Life that I must share. I’m sharing that, beyond the kitchen, I struggle with being a military wife when it keeps me so far from my family when they need me- like now. Trying to reconcile leaving my nephew because I still have a family who I’m responsible for. Writing about food when it’s the furthest thing from my mind at times. Hoping that by choosing to deviate from the norm, some one will recognize the symptoms of an AVM rupture after having been made aware it exists.

Food just doesn’t fit today.

My sister shared this picture with me last night. David Caleb has been promoted to wearing PJ’s! This is a big deal because it means his medical team doesn’t feel they need to keep him exposed for critical procedures. It’s progress. She shared a video shortly thereafter of my nephew’s breathing tube being removed and him groaning. It was the most beautiful sound I’ve ever heard.

Prayers are still needed. Please pray for Tasaly and David, Tony and Janelle, and my entire family. Share with me your experience, if any with AVM. Pray we find the right way to move forward as a tribe. If you’d like to help, email me. You can find my contact info under the contact page.

We love you, David Caleb, and we can’t wait to tell the world about your miraculous story.

Love and hugs and loads of prayers.

~Marta