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.
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| 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.
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| 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!
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| 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
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.
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| 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. |
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.
