The AVM

I looked into the face of the female nurse standing opposite us.

“It’s neurological,” she said.

I was filled with a mix of emotions. I was glad someone had finally taken my daughter’s symptoms seriously, but I was also filled with an increasing sense of dread. Fear and anxiety quickly took over, along with a sense of unreality. This couldn’t really be happening, could it?

I remembered back to the previous day. My daughter and I had both been sick for the past two weeks. First it was the sore throat, lost my voice type of flu. Then it was the stomach nausea diarrhea flu. On Sunday she told me she was feeling better and thought she would probably be well enough to go to school the next day.

In the morning, I leaned over her bedside and softly inquired if she would be attending school. When she turned over and shook her head, I exited the bedroom and called to my son that it was time to leave.

Around 6:00 p.m. I returned home after work, bringing a full carload of groceries with me. As my son headed toward the door to begin retrieving them, he noted his concern that his sister had spent the previous hour in the bathroom and he was worried about her. I knocked softly on the bathroom door to check on my daughter, calling, “April, are you okay?”

Normally, my daughter would respond to this type of enquiry by saying something along the lines of, “I don’t feel good, Mom,” but this time her response was different, and remarkably strange.

“Stop it, Mom, just stop it,” she moaned.

Thinking she hadn’t heard me properly, I repeated the question. “Are you okay, honey? Do you need anything?” I asked.

“Please just stop it, Mom. Just stop it,” she pleaded.

Puzzled, I decided to give her a few minutes while my son and I brought in the groceries and put them away. When that time had passed and April was still in the bathroom I decided to try again. When I received the same answer, accompanied by more moaning, I thought she must be in pain. After convincing her to take some Motrin, I left her alone, at her request. About a half hour later I heard her finally exit the bathroom and go to bed. Well, I guess she won’t be going to school tomorrow, either, I remember thinking.

Later that night, April came out of her bedroom and we had the strangest conversation. “I don’t understand what happened to me,” she said. She almost seemed to be sleepwalking, as she just wasn’t making a lot of sense. I finally convinced her to go back to bed, and headed there myself.

We share a bedroom. In the middle of the night we had the same conversation. “I don’t understand what happened to me. What happened to me?” she kept asking.

Several times I responded that she’d had the flu, and that she would be staying home again the next day. Finally I had to remind her that I had to go to work the next day, and that I needed to sleep.

The next day I went to work, but received an urgent phone call from my son at 3:30 p.m. April was screaming in the background, something she hasn’t done since she had an ear infection when she was three years old. When I had him put her on the phone, it was clear that April was in tremendous pain, so much so that she had difficulty understanding what I was saying. I finally managed to convince her to take some Excedrin to take the edge off.

Meanwhile, I left work, stopped at the grocery store to buy more Motrin, as we were out, and headed home. By the time I arrived, the screaming had stopped, but I knew I needed to take April to the doctor. Unfortunately, the doctor’s office was all the way across town, and they closed at 5 p.m. When I called ahead the nurse suggested I take my daughter to the emergency room, which I did.

We drove to the local hospital, and checked in with the nurse in the emergency room. We were quickly called back to the triage nurse, where I told our story. I emphasize that my biggest concern was the fact that my daughter wasn’t making much sense. She kept gesturing to the left side of her head and repeating, “Pain . . . pain,” in response to every question. She couldn’t follow the directions of the nurse when told to step on the scale. I had to take her by the shoulders and gently move her there. “What? I don’t understand,” she said in frustration.

After the nurse took her vitals and wrote down my daughter’s symptoms, we were told to have a seat back out in the completely full waiting area, and that we would be called soon.

Two hours later we were still waiting. The woman sitting near us explained that she had been waiting for four hours. Another man had been waiting more than six. She suggested that we go to another hospital that had a shorter waiting period, but I was afraid that would just put us at the back of another long line. I turned to my daughter and asked if she wanted to just go home, have me give her some more Motrin, and I would take her to the doctor in the morning.

“No, Mom. I need to be seen,” she managed to get out, again gesturing to the length of the left side of her head.

I turned back to the woman sitting near us and asked for the name of the hospital, and I called to make sure they really did have a shorter wait time. “Fifteen minutes, they said.” The woman gave me directions to get there and I held onto my daughter to guide her back through the parking lot. I set the GPS on my phone, and we were on our way.

Eleven minutes later we arrived and walked into the emergency room. It was so much less crowded than the previous one, but seemed to be filling up fast. I had my daughter sit down while I waited in line and checked in. Fifteen minutes later we were in triage with two young nurses, one male and one female. Again I told our story, emphasizing that my daughter didn’t seem to understand. When they asked her questions, April was not able to answer coherently. They gave her a pain chart with faces on it and asked her to point to the face that matched her pain level. My Honor student daughter didn’t understand what to do.

I looked into the face of the female nurse standing opposite us.

“It’s neurological,” she said.

I was filled with a mix of emotions. I was glad someone had finally taken my daughter’s symptoms seriously, but I was also filled with an increasing sense of dread. Fear and anxiety quickly took over, along with a sense of unreality. This couldn’t really be happening, could it?

One nurse stayed with us while the other prepared a room and called the doctors. A few minutes later we were taken to a room to have my daughter change into a hospital gown and be put into a bed. Soon after that she was taken for an MRI. When the results were given to me, I began to shake. There was something going on in my daughter’s brain, either a tumor or a massive blood clot, they weren’t sure which.

April was to be taken by helicopter to a children’s hospital which specialized in neurosurgery. I called my son to explain. Somewhere around midnight my daughter was taken away, and I was told to drive safely, that my daughter needed me to arrive alive. I went to my car to make the journey on my own, as the full impact of what was happening finally hit me. In tears, I bowed my head and prayed for my daughter. Then I set my phone’s GPS and started the car.

A Life Flight Helicopter Transported April to the Children's Hospital

I don’t remember how fast I was driving, but I do know that I had to make a conscious effort to reduce my speed several times so that I would not cause an accident. I also remember seeing the silhouette of a helicopter as I neared the city where my baby was headed, and I was convinced it was the flight that was transporting my daughter. Again I cried to my Heavenly Father to watch over my child and to keep her safe until the doctors could help her.

Finally I exited the freeway and drove the surface streets toward the children’s hospital. I was grateful for the late hour, as there had been little traffic along the way. As I neared the street where I would make the final turn, I spotted a Life Flight ambulance leaving the area. I knew that my daughter had been successfully transported to the hospital, and that I would soon be there.

After driving that last few minutes, I made it to the parking garage and tried to head into the building. Many doors were locked, due to the late hour. Finally, I found my way to the emergency room, where a security guard rudely demanded he see my purse before anything else. I was shocked that he would speak so unkindly when I was so worried about my child.

As he checked my bag, the nurse behind me checked and told me where to go. Some nice man directed me through a locked door and somehow I ended up in a large treatment room with about a dozen doctors, nurses, and technicians. They surrounded the table where my daughter laid. One of them started giving the treatment background and symptoms, as the other apparently listened. It was like a scene from one of those hospital movies.

Somebody took my arm and led me to a pair of chairs just outside the room and sat me down. A few minutes later someone came and told me they were going to take a more detailed scan of my daughter’s brain, and that the neurosurgery team was on their way.

The next many hours are a blur. I know my daughter was taken to a pre-op area, and that I was able to stay with her for a while, but finally it was time for them to take her for tests. I remember being in the room trying to stay out of the way, but also trying to keep my daughter calm as they placed her on the table to do the MRI.

Afterward they brought us up to the PICU (Pediatric Intensive Care Unit) and told us the neurosurgery team would let us know one they had more information about April’s condition. In the meantime, the nurses showed me a little fold out chair with an ottoman that had sheets and a couple pillows for me to lie down on at the back of my daughter’s room in the PICU. Every so often my daughter would call for me, and I would respond.

After a couple hours, the nurse offered me the key to one of the family rooms so I could get some sleep, insisting that my daughter would be out for the night. Instead, I told her that I needed to go home, check on my son, and get a shower and change of clothes.

So I drove home, showered, and had just sat down with a bowl of cereal (my first meal since lunch the previous day) when the hospital called. My daughter was awake and calling for me. How soon could I get there?

All thoughts of gathering clothes and supplies for the next week for the two of us went out of my head. My baby needed me and I needed to go immediately. So I got in the car and headed back to the hospital.

When I got up to my daughter’s room I could hear her calling for me. “I’m right here, honey,” I called, trying to get a glimpse of her through the team of people surrounding her. They quickly parted so she could see me, as she reached out a hand to grab onto my arm.

Sometime after that, the neurosurgery team came in to give an update on my daughter’s condition. They confirmed that she had experienced an AVM, a malfunctioning blood vessel in her brain that had caused massive bleeding and clotting. The pressure of the blood had caused my child’s brain to swell inside her head, leading to the tremendous pain she was experiencing. They wanted to wait for the swelling to go down a little bit before operating in a couple days, but if it didn’t they would operate later that day.

And so it was that my daughter had brain surgery later that evening to remove the malfunctioning blood vessel and all the blood clots. That was Wednesday evening. I spent that night in my daughter’s room in the PICU, occasionally sleeping in the little fold-out chair. Every hour they woke her up to check her vitals, although she was hooked up to many different machines. They also asked her to moves her hands, arms, legs, and feet, which I knew was to check for paralysis. I tried not to panic when she didn’t move them when requested.

April in the PICU After Emergency Brain Surgery to Remove the Ruptured AVM

Somewhere along the line I called my ex-husband, who didn’t answer the phone, and left a message to say that it was an emergency to do with our daughter. We texted back and forth over the next few days, the most I’d spoken to him in years.

I also called my mother and gave her the facts. I felt both these people had a right to know what had happened to my baby.

I texted one of my coworkers. I posted an update on Facebook, asking for prayers. Many people responded. It was all so unreal. A friend brought my son for a visit. He was so upset that he couldn’t stay for long.

When it came time for my daughter’s surgery, I was directed to a large waiting area on another floor, where I was told to check in and wait, and to sign out if I had to leave the area for any reason.

Hours went by. I’d had about two and a half hours sleep in the last two days and I felt a certain waking dreamlike quality to the events around me. I think I got something to eat at the food court downstairs, but I’m not certain. I do remember laying on the couches in the waiting area with my jacket over my head, trying to get some rest. Some adults came in with some children who were squealing while they played with something. They kept trying to shush their children until I told them not to worry about it. I sympathized. I remembered those days, and I could not imagine trying to hush little ones in a similar situation.

Eventually, my name was called and I was told my daughter was out of surgery and in the recovery room. Sometime later I was told all had gone well and that she was headed back to the PICU. I made my way there, made a few more calls, texts, etc., and laid down on the little fold-out chair. I think I got about four and a half hours sleep that night, on and off.

In the morning the neurosurgery team came by again. The surgery had gone well; they thought they had removed the entire blood vessel and all the clots, but they would do an angiogram the next day to get a better look.

In the meantime, my daughter was on a ventilator, and she hated it. She had to be restrained, because she kept trying to rip out her four IVs, the catheter, and the tube that went down her throat. She didn’t understand what was going on. She hurt, and she obviously thought all the wires and tubes were causing her pain. She kept motioning for a drink of water, which we couldn’t give her, due to the tube down her throat. She kept vomiting stomach liquids, and she was miserable.

It is a hard thing for a parent to watch their child in pain and misery, and not be able to do anything to help them, except to be there.

Later that day, they removed the tube down her throat. I thought this meant she could have some water to drink, but it was still not allowed, due to possible complications. It was heartrending to hear my daughter cry, “Please! Please!” as she made a drinking motion with her hand. I lost count of the number of times I had to explain to her why she couldn’t have a drink, as I had to see the tears in her eyes at our refusal.

Five or six times a day I had to explain to her what had happened to her, where she was, and why she couldn’t rip out the tubes from her body. Each time, it was like she was asking for the first time, although her speech was limited to just a few words, and she didn’t understand much of what was said to her.

Days went by. The angiogram seemed to show that all the damage had been removed, but they wouldn’t know for sure for several months. The doctors told me she would need another MRI in three months, and another angiogram in six months in order to check for any more problems. The breathing tube (which had to reinstalled for the angiogram) was removed.

The catheter was removed, which made April feel so much more comfortable, although it had to be reinstalled briefly one day when she had trouble peeing. The bandage around her head was removed and a smaller one, just over the wound, was applied. I brushed her hair and removed what had been shaved off from the braid I’d made before her surgery. Two-thirds of her waist-length hair was intact, although it was very greasy and dirty.

Friday came and two of the IVs were removed, leaving three more in her arms and hands. April was moved out of the PICU, to a private room where she would only be bothered every four hours instead of every hour. She was able to sit on a chair in the shower so I could clean her and wash her hair. I could tell she felt much better after that. She got clean sheets and a clean gown. We both slept much better that night, her in her hospital bed, and me on the small couch next to her so she could call to me in the night.

On Sunday, my co-worker brought my son for a visit. Since I had called and given Michael directions, he came with a suitcase full of clothes and supplies for us. He was so sweet with his sister!

Brother and Sister Hug

We spent a few hours together before a friend arrived to take my son home. It was good for all three of us to get some time together.

On Monday or Tuesday (I can’t remember which one right now!), April was transferred to the rehabilitation center across the street from the hospital. Although we had been warned that this facility was not designed for children, the closest pediatric facility for neurosurgery patients was in another state, so this one would have to do.

Immediately upon entering the rehab center I understood why we had been warned. This building was dark and dismal, without any of the bright, cheerful colors of the children’s hospital. It looked old and worn-out, and a bit less than spotlessly clean. The nurses seemed less professional, and less caring, too.

There was a loudspeaker on the wall next to my daughter’s head, through which came calls from the front desk to every nurse and attendant in the facility at one time or another. 

The calls were to help this or that patient in this or that room, and they came every minute or two from 6:45 in the morning until eight o’clock at night. When I inquired about it, I was told by an annoyed attendant that it was “necessary in case there was an emergency,” but it didn’t make sense to me. Thank goodness they used a different, quiet system at night.

The next day was testing, to find out what needs my child had for PT and OT. On the second day she was tested for speech therapy, and it was clear that this was the area of her greatest need. Not only did April have memory loss of recent events, but she could not remember colors, shapes, days of the week, or even letters and their sounds. My Honor student daughter could no longer read. (My daughter tells me this is the point where she realized that something was “wrong” with her, when she could not do these things.)

I began to realize the scope of the challenged laid before us. My 15-year-old daughter would need to relearn all these things that most children learn in kindergarten, but that she knew in preschool. The same girl who had read each of the Harry Potter books in three days apiece would need to relearn her letters and sounds before she could relearn to read books. I frequently thanked God that He directed me to get a Reading Specialist Credential years prior to this event and that I had been relying heavily upon it in my teaching in the six months preceding my daughter’s surgery.

That was one-and-a-hal

April had to learn to read all over again after brain surgery. We started with letters and sounds, then moved on to more complex reading passages as she improved.

f years ago. Since then my daughter has made incredible progress. She is back in her Honors classes in high school. She still needs math tutoring several times a week, and her reading speed is still much slower than she likes, but she’ll get there. The primary neurosurgeon told me that eventually she will completely recover all her memories and abilities she had before the AVM. No one speaking to her would ever have any clue she had brain surgery, as her recovery has been that dramatic.

More than anything, I have been impressed by how my daughter has grown and changed as a person. There is a depth of wisdom in her now that is difficult to define. She amazes me every day.