Brain Injury - Our Story

Brain injuries suck.
How do I know this?
Because it happened to my daughter.

Okay, the story is a long if you want to hear it, grab a chair and sit back.  I don't mind telling it, because I never know who out there it might help.  I certainly wish that I had known someone back then who could have given me some insight on the subject when it happened to us. I remember feeling so alone back then.  I felt like the whole world -- at least the world that surrounded me -- was full of people with healthy, normal children... and I was the only one with a child who was brain injured and no longer "normal".  And what in the world was I going to do now??  Ugh.  It was an awful time for me.  

But I digress....

Let's take you to the beginning of our brain injury journey.

February 1997

The Family:   Me (27)  and my husband Rich (31)  our son Anthony (5..aka Tony) our daughter Audriana (4) and our daughter Afton (19 months)

our Christmas photo - December 1995

the kids - December 1996

We were living at my mom's house while renting out our house in order to save money for a down payment on a new, larger home.  Life was great!  I was a stay-at-home mom and loved it.  I did the Mommy & Me classes with Afton, Tony was enjoying his Kindergarten class, and Audriana had just started preschool and was beginning tap dance lessons.  It was a very happy time.  We had healthy kids, and we were almost at our financial goal and were just beginning to look for our new home.  Life. Was. Good.

The Date:  Monday.  February 17, 1997.  It was President's Day, and Rich was just getting off work. We had a fun snow day planned and I woke up early, packed up the car, and I drove up to meet him at our rental house.  He got into my car, and we drove with the kids to our local mountains.  I had a red 4-door Volkswagon Jetta at the time.  Rich had wanted to take his Chevy Astro van, but I said NO because I didn't want to have to switch the car seats around.  Looking back, I wish I would have taken the time to switch the seats because if we had been in his much larger van -- well, hindsight is 20/20, right?

The Drive Up:  It took us about an hour to drive up the mountain.  Rich was driving, and I kept looking to the back to see if any of the kids were sleeping.  Tony was beginning to doze off, and Afton was sleeping, but Audriana was wide awake like always.   Rich and I got into conversation. I always loved our car rides because it seemed the only time he and I could get into conversations without getting interrupted 20 times.   After a while Audriana interrupted us and said, "Mommy?  Mommy.  Mommy."   I looked back and said, "What, Honey?"  and she said, " angels have wings?"  and I said, "Yes, they do."  So then she smiled and looked out the window.  I turned back around and continued my converstation with Rich.  About two minutes later I hear "Mommy?  Mommy.  Mommy." again, and so I turned around, "What, Audriana?"  and this time she said, "When I die, will I be an angel?"  Strange question, but okay..... "Yes, you will.  You will be an angel for sure."   and a huge smile broke out on her face, she leaned back into her chair and looked out the window, and she said, "And I will fly around....." 

For as long as I live I will never forget her words at that moment, and how they made me feel.  I shook the feeling, though.  Certainly she wasn't having any kind of premonition, right?  She was just a typical 4 year old who was thinking about dying and becoming an angel.  Hmmmm.

Fun in the Snow:  We found a nice hill to slide down up in the neighborhoods where it wasn't crowded.  The slope was a vacant area inbetween two houses.  It was so pretty!  The weather wasn't too cold, just crisp.  The sky was cloudy, but the weather was just right.  We all took turns sliding down the hill.  The kids were all bundled up in their snow gear.  We ate the lunch that we had packed.  Then, from out of no where, the sky got really dark.  We heard loud thunder.  I remember my first thought was avalanch!! when I heard the thunder.  I looked up to make sure the hill wasn't coming down on us.  And then... it started snowing!  What a treat!  Living in southern California, we never  get snowed on.  So we were pretty excited.  I had my video recorder out, and we were having fun with it.  But poor Afton was shivering.  And I was getting cold, too.  Rich announced that we had better leave quickly and get down the mountain before we got snowed in, because he had to work the next day.  So, we started packing up.  I remember I grabbed the plastic sled and put Audriana on my lap, and she and I rode together down the hill all the way to the car.  I can still remember hugging her tight to my body and just enjoying the moment so much.  She was my "Big Girl" and because of the baby, cuddle times with her seemed to get fewer and fewer lately, so I just really remember how nice it felt to have that special time with her at that moment, sledding down the hill with my arms wrapped around her in her big, puffy snow suit.  When we got to the car, we quickly put the kids in their carseats and started down the hill.  We stopped once to get some snack food.  While Rich went into the store, I took that time to put my video recorder into the trunk, and I pulled out my camera and took a couple pictures of my car. Having snow on the roof was something that I wanted to get a picture of. 

Down the Mountain:  So we started back down the mountain.  I was so nervous.  The roads were very slippery and there were a ton of cars doing the same thing as us -- trying to get out of the storm and down the mountain before they got snowed in.  Rich drove very slowly, but I was still very uneasy.  Cars were skidding everywhere.  I suggested that we just pull over and wait for it to stop snowing, but Rich said no to that.  He needed to be at work the next day and didn't want to risk getting stuck up there.  He didn't seem uneasy at all about the drive down the mountain and kept telling me that we would be fine.  At one point I had a quick thought, actually it was more of a feeling or a sensation, of what it would feel like and sound like to have a car smash into us.  I shook the thought right out of my head, hating myself for thinking such a thing.

It seemed like it took forever to get down that mountain, and when we finally reached the bottom and started along the straight two-lane highway, I felt very happy.  I rememeber the feeling so well.  It was the same feeling that I have everytime I go on a trip on an airplane and make my final landing home, and I know there is no more plane rides, and I'm home safe.  It's just a feeling of happiness combined with relief.  It's a wonderful feeling.  I looked back at the kids.  They had all fallen asleep on the way down the mountain.  Even Audriana, who usually is the last one to fall asleep, was sleeping.  I was happy about that.  That meant that I had the whole car ride home to talk with my husband without being interrupted!  Audriana's car seat was behind the driver's seat, and her head was resting on the window.  I didn't think anything of that.  The carseat that she was in was a 1996 model.  It was a 5-point harness seat but did not have any side impact protection, so there was nothing to lay her head on.  It simply had a head rest.  So whenever she fell asleep in it, her head would either loll to the side or in front of her, or in this case rested on the window.  I let her be, since she looked so tired.

The Accident:  I turned back around in my seat and settled in for the two- hour ride home.  I was so full of joy because of our fun, fun day and the fact that we were now out of danger...and then I noticed two cars pulled over on the side of the road.  Their cars were pretty smashed up.  No one was hurt, we could tell, because they were all out of the cars and talking to each other. As we passed the accident, I said to Rich, "Man....glad that's not us!" and he said, "No kidding!"   

Although it wasn't snowing at the low elevation that we were at on the highway, it was still raining a bit and we could see  some snow flurries drifting around.  The speed limit was 55 but everyone was driving slower due to the weather conditions.  We were on a two-lane highway and the only thing dividing our lane of traffic from the oncoming lane of traffic was a dotted yellow line.  I was nervous coming down the mountain, but for some reason I wasn't nervous about this road.  Now, these kinds of roads terrify me.  Now I know better.

It happened so quickly, but yet in slow motion.  How is that possible? It doesn't sound possible, but I swear that is exactly how it happened.  I saw a 4-door white Jeep Cherokee in the oncoming traffic skidding....and heading into our lane.  I assumed it would miss us.   Things like this don't happen to me. It happens to other people, like the people that we just passed or people on the news.  But there it was, skidding towards us, to my left, heading for the left side of our car.  The side Rich was on.  The side Audriana was on.  It slid, and slid, and slid....and then WHACK! It hit into us with that same sound and feeling that I had imagined not 15 minutes before.  The road was so slippery that our car did a 180 degree turn and we ended up on the side of the road facing the opposite way of traffic.  It was so quick!  Our car stopped almost immediately.  I was so relieved!  Air was rushing through the car and at first I didn't even think twice about why that might be.  My main concern was to make sure the children weren't scared by what happened.  At this second in time I had no doubt in my mind that no one was hurt.  It was not an awful accident.  It just made us spin around, is all.  I was fine.  Rich was fine.  I was not scared or nervous at all at this second in time. In fact, I was just relieved and wanted to make the kids think it was no big deal, so I turned around in my seat to face them and I said, "Wow!  What was that?!  That was fun!"   talking, of course, about the "ride" (the spin) we had just taken.  I noticed Tony and Afton were wide awake and were both looking at me with  very frightened expressions, so I was hoping by seeing my smiling face and my happy attitude they would be reassured and calmed.

And then I looked to Audriana.  She was still sleeping.  I thought that was odd.  The impact woke the other two.  Why not her?  Then I noticed that instead of her head resting to the window side (to her left), it was resting to the other side.  Her face was the same -- peacefully sleeping.  But yet....why wasn't she awake like the other two?  Then I noticed where the cold air was coming from.  The windows on the left side of the car -- her side-- were gone, smashed by the impact. If they were smashed by the impact, and her head was resting on the window.... (this thought process took all of 2 seconds, by the way)

I said to Rich, who had not yet turned around to see the kids, "Audriana's knocked out!"  and he immediately turned around in his seat, and said, "Noooo..." and I said, "Yes! Yes, she is!  She's knocked out!"  and I watched as he quickly put his two fingers to her neck.....and said something that turned my blood cold.  He said, "She has no pulse!" 

And from there, things happened but I was not really there.    I was looking on and functioning and doing and saying all the right things, but I was not fully there.  I don't know what happened to me and it's so hard to explain.  Maybe it was shock?  I don't know.  But I went into some kind of survival mode where I was able to detach from the reality.  Don't get me wrong...I knew what was going on, and I had fear and the emotions that a person would have during a time like this, but I was just in a sort of protective haze.  It's the best that I can describe it.  I remember every single detail about all that happened next.

First of all, I was calm. I was extremely calm.  Rich pulled Audriana out of the car and lay her on the ground and begain CPR.  I got out of our car, grabbed our cell phone and began calling 911.  Back in 1997 the cell phones were big and clunky and did not work well.  I was unable to get a dial tone.   Many cars had pulled over to offer assistance, and so I ran from car to car asking for a cell phone and telling everyone to call 911.  No one had a cell phone or a car phone that worked.  There was simply no reception with all the mountains surrounding us.  That's when I remember getting a panicked feeling for the first time.  Not being able to call for help was an awful feeling!  I kept hearing Rich yell, "She's still not breathing!"  so I went back to our car, got Afton and Tony out of their seats and walked away with them while Rich continuted CPR on Audriana.

I walked away. 

Sometimes, when I think about that, I can get really upset at myself.  How could I walk away while my child lay on the cold, hard ground not breathing?  What kind of mother was I?  See, this is what I mean about how I was not there.  I was able to think logically instead of emotionally, and I just don't understand to this day how in the world I was able to know to do that.  Looking back now, I realize that by walking away I did the very best thing.  I left Rich to do what he knew how to do (he's a paramedic firefighter, by the way)  instead of standing over him, screaming and/or crying, which might have made him become emotional instead of staying focussed on what he needed to do to save her.  And not only that, but I removed my other two children from a frightening scene.  They were still in their carseats and did not have a view of what was going on below the car, but they could hear it.  I didn't want them to be near it at all, so I took them and myself away.  I walked to a car that I remember was behind us the entire way down the mountian.  There were two men and a little girl in the car.  They let me sit in there with them so that the kids would not get rained on. 

From the back seat of their car, I could see Rich doing CPR on Audriana.  She was still in her little blue snow suit.  I was in such a hurry to get the kids into their carseats so we could get down the mountian that I didn't bother to take off Audriana's snow suit.  I remember feeling glad that she was still in her snow suit.  At least she was protected from the cold, wet ground. I watched and watched and watched as he pumped her chest and bent to breathe in her mouth over and over and over...and every once in a while he would put his head to her chest and yell, "She's still not breathing!"  Afton was on my lap and I hugged her tight and told her it was okay.  She was whimpering a bit, and it was then that I realized that Tony had been whining about something.  He kept saying, "Mommy, my eyeeeeeee....."  and he was holding his left eye. I looked but there was nothing wrong that I could see.  I kept telling him to hush, that he was okay.  Later we found out that a peice of glass from the windows had flown into his eye.  Poor buddy.  He had it washed out at the hospital later.

About ten minutes after we were hit, as I sat there in the stranger's car with my two children, an ambulance came up the highway and pulled over next to us.  I remember wondering how in the world they knew we had an accident, when I was never able to use our cell to make the emergency call, and no other cars had a cell phone?  It wasn't until much later that day that it occurred to me that the ambulance was called out to the accident we had passed on our way down, and in reaching us first, assumed it was us that the call was for.  Thinking about it now, we are very very lucky that those other people got in their accident.  If it wasn't for their emergency call, we would not have had an ambulance come for us...and I have no idea what might have happened.

There were two EMTs on the ambulance, and they both slowly climbed out of the ambulance  and started getting equipment out of the side compartments.  I left the kids in the car and ran over to the two boys men (they looked so young!)  and I said to one of them, "She's 4 years old, she's not breathing and has no pulse!"  and the guy just looked at me, and then slowly got his equipment and started walking towards Audriana.  S L O W L Y walking.  I couldn't believe it.  So I yelled, "Hurry up!  Run! Run!  What's the matter with you!  She's not breathing and you're walking?!!!  Go! Run!"  and only then did he add a pep to his step and began to trot towards Audriana.  I had to tell him to hurry.  Isn't that pathetic?  It still makes me so angry, when I think about it.

I got back into the stranger's car with the kids and watched from the window.  They were pretty far from me so I could not hear what they were saying.  The next thing I knew,  they had Rich and Audriana in the back of the ambulance and they zoomed off.  There I sat, in a stranger's car, alone with my two little kids.  I had no car.  I had no idea where they went.  There were no police there to assist me.  I had no idea what I was supposed to do, and the most frightening part was that I had no idea if Audriana was alive or not.  

The two men and the little girl were still sitting in the car with me, of course.  And the driver said, " can we help you?  I mean, do you  know where they went?"  and I said, "No.  No one told me anything.  They just left."

It was quiet.

"Well...we can take you to the nearest hospital.  I think Loma Linda is about 20 minutes from here.  They must have taken her there.  It's a big hospital."

I said, "Thank you so much."

Before we left, I took the time to get Afton's carseat and Tony's booster seat our of our car and installed into their car.  I grabbed my purse and the diaper bag, and we were on our way.  It was silent for most of the car ride.  It felt very strange being driven by these complete strangers  (who I had learned were two brothers and the little girl was the daughter of one of the brothers) but in a way I didn't even care.  I just needed to find Audriana, that was all.  I didn't care how I got there.

During that 20 minute car ride,  I thought about how crazy this all was.  How unreal it felt.  We were having the perfect day.  What happened to our perfect day?  Why did this happen?  I closed my eyes at one point and willed it all away.  I willed a "do-over" for the day and visualized a day of staying at home, safe in our beds, instead of going to the mountains.  Oh, how I wished so badly at that moment that I could go back and do the day over!  I would insist we stay up on the mountain until the storm passed.  I would insist that it's okay to miss a day of work if it means our safety.  I would have taken our big van instead of our little car.  I would have reached over and yanked the steering wheel hard to right to avoid being hit.  Woulda, coulda, shoulda.  How could we have known? What do they say about hindsight being 20/20?  It's so true.  There are about 20 things we could have done to prevent this from happening...if we only knew at the time.  And you never know at the time.

I asked one of the men if I could try their cellphone again. Now that we were no longer near the mountains perhaps we would get reception.  I dialed my mom's number, and sure enough she answered.

"Hi Mom."  I said, in my normal voice.  It was very strange how I sounded so normal.
"Hi sweetie," she said, "are you heading home now?  What time do you think you'll be back?"
and it all sounded so wonderfully normal, and it just hit me right then and there, the seriousness of it all.  I wanted more than anything to be home by 6pm like we had planned.  But it wasn't going to be like that.  We were going to be in a hospital, two hours away from home.  And I had no idea if my daughter even survived the trip over there.  At that point, all my emotions caught up with me and spilled out into the phone.

"Oh Mom!  We were in an accident...."  I started to cry the ugly cry, you know, where you can barely choke the words out --
"....and Audriana was taken away in an ambulance..."
my mom then asked me what happened to her, why did they take her away? --
"... she wasn't breathing!" I said.
My mom cried something like, "Oh no!" and she was so upset, I could hear her voice shaking.
And then, I just completely came to an abrupt emotional stop.  That was it.  No more hysterics, no more sobbing.  Just calm.  I spoke in a calm voice and told her that I wasn't sure but I thought that maybe they were taking her to Loma Linda Hospital, and that I would call her when I knew for sure.  I then handed the phone back to the man in the passenger seat and quickly apologized for falling apart like that.  Can you believe I actually said I was sorry for my crying outburst?  Both men assured me that they understood and to please not worry about it, that they felt so helpless and wished they could do more for me.  They were actually very, very nice.  The little girl sitting next to me was very quiet.  I could tell she felt awkward about this whole thing.

The Emergency Room:  We got to the hospital, and I thought they would just drop me and the kids off, but the man who was the passenger insisted on coming in with me to be sure we were at the right hospital.  He helped me carry the carseats into the Emergency room.  Then as I was getting the kids into some waiting room seats, he went up to the front desk. He came back to me and said that yes, she was here.  They had her in one of the rooms of the ER and they were "working" on her now, and that my husband was in there with them.  I thanked him and told him that he could go, but he insisted on staying there with me until my family (my mom) arrived.  So he sat in a chair, and I tended to the kids, waiting for Rich to come out to give me an update.

And here is where I don't remember too much, for some reason.   I don't remember the time of the events and the order in which they happened, but at one point Rich came out to see me.  His eyes were very red from crying.  His face was grim.  He could barely talk.  He said something about how her head was hit, her brain is swelling, and that it doesn't look good.   He just kept shaking his head, saying, "It's not good.  God, it's not good...."  and he would begin to cry, which actually scared me a lot.  I was confused, in a way.   I mean, once we got to the hospital and I learned that she was still alive and that the ER doctors were "working" on her, I relaxed a bit.  I guess I had too many years watching E.R. on television...because I just assumed that she would be fine now that the doctors were working on her.  People get saved in the ER all the time.  Naturally, Audriana would be one of them.

I tried to convince myself of this by saying to Rich, "No. She's going to be fine.  She's here now and they will fix it.  She's going to be fine."

He looked at me in disbelief.  I could tell he was confused by the fact that I was just not getting it.  In a very slow and deliberate voice he said, ", she's not going to be fine.  You don't understand.  It's not good.  Her hurt.  She's not breathing on her own. She's posturing.  It's bad."

Up until this point, I still didn't quite understand what her brain had to do with anything.  Head injuries were something that I knew nothing about. I was completely ignorant to the seriousness of a brain injury.  I really just thought that Audriana was knocked out for a little bit of time, you know, like how you always see on tv where someone is knocked out and then later wake up and it's no big deal.  So I didn't understand why Rich was taking this so hard.  And his throwing the word "posturing" out at me didn't help, either.  I wasn't familiar with the paramedic talk that he was, so that word meant nothing to me.

I was ignorant to it all, but also in denial.  I simply couldn't comprehend how this was happening to us when less than an hour ago we were all so happy and life was great, and our daughter was peacefully sleeping in the back of our car.  How did we go from that to this?  I wanted to get my daughter and leave this place.  I didn't want to hear how hurt she was.  I wanted to wish it all away....

Rich lead me to the room where they were working on her.  The door was closed but there was a little circle window that we could look through.  I put my face near the glass...and there she was, lying naked on the table with about 7 doctors and nurses milling around her, each doing something that was saving her life.  I remember the first thing I felt when I saw her was being so upset that she was without clothing and just spread out nude like that, with strangers looking on at her.  I felt so enraged by this.

I said to Rich, "Why are all her clothes off!!  Why can't they cover her with a sheet, or at least kept her underpants on?!!!"  and he explained that it's much easier to work on a patient in an emergency situation when they have no clothing on, so they can assess the injuries and get to everything they needed to get  to.  Clothes get in the way, he explained.   I was so upset about that, for some reason. It just upset me to see her exposed so crudely.  I wanted to protect her, and I couldn't.  I wanted so badly to run in there to cover her up.  To show her some respect. Strange, but that's what went through my mind at that time.  I guess I was just trying to distract myself from the reality of what was going on.

As I continued watching the activity going on around her, I asked Rich more about this "head trauma" stuff he was talking about.  I told him that she looked okay, there was no blood anywhere -- so where's the problem?

"Her brain... is swelling.  If it swells too much, the blood flow... to her brain ....will be cut off.  And that's bad.  That can cause severe brain damage.... or death."  he said this between sobs, and yet I still refused to believe it.  It just can't be possible.

I said, "But...she's in there now...they are working on her...they will stop it."

Rich just shook his head.  "I see this all the time.  It's not's not good."

I watched some more at that little window. Audriana had a breathing tube in and was hooked up to a ventilator.  There were so many tubes hooked up to her, coming out of her arms and one near her ankle. Right around this time, my mom arrived at the hospital.  I went out to the waiting room to meet her.  During this time, I don't remember who was there with the kids.  I believe one of our good friends, Scott, had arrived and was sitting with the kids.  I walked out and met my mom, and only then did the man who stayed in the hospital with me all that time get up to leave.  I didn't realize that he was still waiting there.  He came over to me, handed me a slip of paper,  and he told me that his name and phone number were written on it in case we needed to contact him for a police report, being as they were behind us when we were hit and witnessed the entire accident.  He also said he would like an update on her condition, and that they'd be praying for her.  I thanked him and stuck the paper into my purse without even glancing at it.  About 5 weeks later, I was cleaning out my purse one day, and I found that slip of paper and had no idea what it was.  On it was written the name Tony Dow, and under it a phone number.  And I immediately thought:  now, why do I have Wally Cleaver's phone number?  (if anyone remembers the old television show "Leave It To Beaver" you'll remember that the actor Tony Dow was the one who played Beaver's older brother, Wally.)   Anyway, was him.  Which is such a trip, when I think about it.  I used to watch that show all the time when I was a kid.

I stayed in the waiting room for a little while, comforting Afton and Tony.  I have a fuzzy memory of this waiting time.  I don't think Rich was with me, but I know that my mom was, and Scott was.  And I can't remember if anyone else was.  I don't even remember how long I sat there.  One hour?  Two? Fifteen minutes?  Really, time was just at a standstill.  I was still in such a state of disbelief.

The next thing I remember is a nurse telling me that Audriana had been moved to the PICU (pediatric intensive care unit) and she came to walk with me to show me the way.  She told me that my husband was in the room with her, and that only two visitors were allowed in there at all times, so if another family member or friend wanted to see her, one of us would have to leave the room.

We walked to a security door, and the nurse pressed a button.  Another nurse's voice spoke through the intercom speaker and asked who we were there to see, and what were our names?  I remember the nurse answered, "Audriana.  I have her mother with me."  it seemed, again, so surreal.  I couldn't believe we were here, in this situation.

We were buzzed in, and the nurse lead me to her room and walked away.  In the room was Rich and another nurse.  The nurse was writing something in a chart.  Audriana was lying in the bed, her head completely wrapped up in white cloth.  Her face seemed so large and puffy.  Her mouth was slightly open, her tongue slightly protruding, and a tube was coming out of her mouth. Her eyes were closed.  There were tubes everywhere, it seemed, connecting to her legs, her finger,  her head,  and a few coming out from under the blankets.  I couldn't believe that it was her.  She looked nothing like the little four year old I was just sledding with only a couple of hours earlier.

Rich was holding her hand, just staring at her.  He barely looked up at me.

At some point a doctor came in to talk with us.  He said that she was in very serious condition, that her brain was swelling, and the monitor in her head was an ICP pressure monitor and it tells us how much her brain was swelling.  Anything below 20 was okay...but if it went up, they would have to do invasive measures to get it to go down.  Because I had no clue what really was going on in her head, the doctor explained it to me.  Her brain was swelling, and the more it swelled, the less blood could flow to the areas of the brain.  If it swells enough, the blood supply to her brain could completely be blocked, and that would lead to brain death.  Brain death = death.   Even if the blood flow diminished slightly, that could lead to further brain injury.  The injured brain does it's most swelling during the 2nd and 3rd day after it was injured, so we were just in the very first few hours of it, and it was going to swell more.  How much more, no one could say for sure.  It was a "wait and see" situation, as we watched her ICP monitor.

For hours, that is all we stared at.  She was in the high 20's already, which was not good news being that it was still early on into the accident.  Even though she was already in a coma, they then put her into a medicated coma so that she would not wake up or stir.  The less she moved, the less brain activity, the better to keep her brain calm and would help her during this time.  They also put her in an "ice blanket" to cool her body temperature.  That helps to slow the brain activity, too.  They also pumped her full of all kinds of drugs to help with this situation, but I don't remember the names of those drugs.

I can't remember who all visited during this time.  I'm sure my mom did, but other than her, I don't have much memory of it.  I sat there and held her hand, and time stood still.  I stared at her monitors and prayed.  I was not allowed to talk to her due to the need to keep her calm.  That was hard.  There was so much I wanted to say to her.

It was SO HARD to see her in the state she was in.  Her face was so huge.  She barely looked like herself.  What I did not know at that time was that the left side of her skull was bashed in.  Her left eye socket was smashed and later would need reconstructive surgery.

The evening went on and on.  Eventually my mom left for home and took Afton and Tony with her.  I was still in the same clothes that I had on that day, and for the next three days I stayed in those clothes.  I didn't care.  I still had my snow boots on.  The hospital was so quiet during the night, especially where we were, in the PICU.  But our room was not peaceful.  It was busy, with doctors and nurses coming in and out, checking on her.

Her ICP pressures continued to rise steadily over the next 24 hours.  At one point it was in the high 30's, and at that time the neurosurgeon came in to talk to us.  He requested to see us in a small, private room.  It was there that he told us that everything was being done that could be done, but it wasn't looking good for her.  He had a terrible bedside manner, actually.  He was very blunt, and he said, "If her ICP pressure gets into the high 30's or low 40's, there isn't much blood flowing to the brain and there is brain death going on.  If she gets to 50, there is no blood flow, and she dies."   He then told us that there is one other thing they could try, and that was to go in and remove a section of her brain to make room for the swelling, and then leave the bone flap off so that the brain could swell out the skull instead of in.

Well, that sounded completely horrifying to me.  Remove a section of her brain? of her perfect, perfect brain?  They couldn't be serious.  I guess the doctor saw my expression because he said, "The portion that we would remove would be from that left side, anyway, which is already damaged."

He then showed us the scan of her brain that was taken just a few hours before, and I stared at the image and couldn't believe it.  I had seen photos of what the brain looked like in an x-ray.  Audriana's scan looked nothing like them.  One section of her brain was all dark, and the doctor pointed out that the dark portions were brain matter that had already died.  My heart sank.  I just couldn't believe it.  He also pointed to a large mass right in the middle of her brain - known as the mid-brain-  and explained to us that this was a large subdural hematoma, which is basically a bruise inside of the brain.

He told us that we would need to make a decision very soon.  Did we want them to do the operation?  I found my voice and I asked, "What will happen if she does not have this operation?"  because to tell the truth, I could not in a million years think that I could ever agree to such a procedure for my baby.

He looked at me and said, "She could die.  If she survives, she will have severe brain damage... but most likely she will die."

Well, there it was.  Just like that, he said it.

When I recovered from the shock of those words, next I asked, "Well, what if she has the operation?"

Without hesitation he said, "She could still die.  But... if she survives, there'd be a better chance that her brain damage will be less severe."

With that, he left us in the room to discuss our options.  We didn't stay in the room but instead walked back to be with Audriana.  We both looked down at her, tears streaming down our faces.  Her ICP was still in the mid to high 30's.    All I kept thinking was that her brain cells were literally dying right then, right there in front of us.

her 4th birthday -  18 days before the accident

We walked over to the room next to us, which did not have a patient at that time.  I asked Rich what he thought we should do?  He didn't know.  He was a wreck, actually.  Completely falling apart.  When he had to work her up on the side of the road, when he had to save her life, he kept it together. He was strong, he was functioning.  He was probably detached and on auto-pilot during that time.  But there in the hospital, where he had no control over anything and where he could just be himself -- a daddy -- and not a paramedic,  he completely fell apart.  He wasn't able to make a decision.  It was up to me.  I had to be the strong and logical one now.  I told him that any decision we made, no matter the outcome, would be the right decision because it was made out of love.  I have no idea why I said that, but those were the words that came to me, and I just wanted to comfort him.  I left him to go find the doctor.

The neurosurgeon wasn't far away.  He was waiting, with a team of doctors....just in case we gave our consent to the operation.    I walked up to him, and I said  "I honestly don't know what is the best for her.  If this was YOUR daughter...what would YOU do?"  and I looked at him right in the eye, demanding that he be a human being with emotions, if only for this minute.  I then saw his eyes soften,  and he gently said to me, "I would have the operation.  It gives her the best chance all around."

So I said, "Okay, then."

The next thing I knew, they were wheeling her down the hall and I was given a clip board with some paperwork on it.  It basically said something like this:  I give my permission for my daughter to have a partial left-temporal lobectomy.  The word that got me was the word LOBECTOMY.   I remember thinking, as I was signing it, I can't believe I'm giving permission for this.

Rich and I then went into the church's chapel and sat for a while.  We prayed.  We talked.  We prayed some more.  I worried every single second.  I paced around, nervously.  I fell apart a few times.  I prayed and prayed and prayed.  A few hours passed.  I wondered why it was taking so long.  I had not idea how long it was supposed to take, but still.  Why was it taking so long?  Eventually, we left the chapel and walked back to the waiting room.

Finally, the neurosurgeon came out to talk to us.  I remember trying to read his face as he walked over to us.  Watching tv and movies, I always remember the no-eye-contact thing happening whenever they need to tell someone that their loved one had died.  No eye contact meant bad news.

To my relief, the doctor came toward us looking at our faces the entire way.  He told us that the operation went well and she did as well as could be expected.  He said that her ICP pressures are still high, but they went down some as they removed some of the brain from her skull.  They left the piece of bone off, to further give room for the swelling that was to come.  He said that the ICP pressures may rise just a bit more with the shock of it all, and then hopefully go down over the next couple days.  He said that the brain likes to feel encased, so they are a bit worried about how it will react now that there is a bone flap missing which leaves the brain exposed in that area.  That was a concern.  But, he said it was all that could be done, and now we just wait and see.

Wait and see.  I had no idea at the time that for the next year or so that the term "wait and see" would become such a major part of our lives.  I have grown to loath the phrase "wait and see".

Audriana was brought back to her room.  The rest of her hair had been shaved off, and they handed us a bag full of all her hair  (I still have that bag...could never part with it.)  We were now finishing day 2 of the accident.  She had this surgery on February 19th.  I only know this because this is written in her charts.  Every day melted into the next, and at the time it was hard to notice the passing of time.  If it had not been for the charts that documented everything, I wouldn't have a clue.

The next 24 hours were very crucial.  We sat and stared at the ICP pressure monitor.  It was in the 30's still.  Over the next few hours, it stayed in the mid 30's. That was a good thing.  Still very high, but yet not going up.

I had not slept yet, and neither had Rich.  It was very late in the evening, and he went out to the waiting area to rest a bit.  I was alone with Audriana, watching her monitors and holding her hand. I stared at her beautiful face and wondered what was going to happen.  She just HAD to pull through this.  What would life be without her?  I could hardly imagine it.

There was a nurse in the room with us.  Because it was the PICU, there was  a nurse assigned to Audriana 24/7.  This particular nurse was quiet most of the time, only talking when I asked a question.  I got tired of the silence, and I asked her a little bit about Audriana's case and if she saw a lot of trauma like this.  She nodded her head yes, and then said, "I see accidents like this a lot.  A lot of head trauma.  It's always so heartbreaking."  

She was silent for a minute or two, and her next words were very soft and  gentle.  "I know this might be hard to hear, but as hurt as she might not want her to survive this."

I was shocked at what I was hearing.
"What do you mean?"  I asked.

She looked at me with such a sad expression.  "If she survives this, she may have a very poor quality of life.  Her brain has been badly hurt. She would be left severely brain damaged, possibly in a vegetative state.  I'm just saying that sometimes it's best that they pass, instead of living a life of nothing."

Now, you would think her words would have infuriated me, but they did not.  Instead, I really thought about what she had said.

I looked over at Audriana.  In my mind I saw her riding her tricycle, playing with her Barbies, trying on all my shoes, playing dress-up.  I saw her in her pink leotard during her tap dance lesson.  I could hear her voice, in a constant chatter to us or whoever else would listen.  I then imagined her lying in a bed, without facial expressions, without a voice,  just wasting away year after year.  I could not bare the thought of that.

going to tap dance - February 15th, two days before the accident

It was during this time that the nurse asked me if I wanted them to do all the life saving measures should her heart stop beating.  Without even pausing I said, "Absolutely.  There is nothing wrong with her heart.  If it stops, it's because her brain is hurt.  Until her brain is able to do what it should, then let the machines help her body function."

I saw her face and could tell that she didn't like my response, and then she wrote something down in the chart.   I was beginning to dislike this nurse.

Later on that night, after much thought, I prayed to God and told him that I wanted more than anything for Audriana to survive this, but that I would rather live the rest of my life with the memory of 4 short, happy years with her, with a healthy and vibriant 4 year old...than to live out my days in sadness, watching her deteriorate year after year, unable to move her body, or talk, or do anything but just lie in bed day after day in a vegetative state.  I asked God to please not leave her that way, that I'd rather she be in Heaven and whole,  than to be like that.  This was a very hard prayer for me to pray, as I wanted her here with me more than anything else, and the thought of her dying was tearing me apart.  But at the same time, I loved her so much ... that I wanted her to have a  quality life.  I didn't want her to suffer.

December 1996 - the day she took her picture with Santa

The morning of the 3rd day came. Her ICP pressures stayed relatively calm during the night, fluctuating  between the low 30's and the mid 30's.  I remember we got a few visitors during this day.  I mostly stayed by Audriana's bedside, but sometimes I would let family sit in there with her, too, and I would leave to go to the waiting room.

In the waiting room, there were plenty of friends and family.  I had no idea they were all there.  I can't even tell you who was all there.  I hadn't slept at all, and I was exhausted.  I remember someone made me a make-shift bed out of some jackets, and I slept for who knows how long.  It couldn't have been too long, a couple of hours, maybe.  The next thing I knew, a nurse came in and called my name, saying that I was needed in the room with Audriana.

I ran to the room as fast as I could.  The doctors were in there, and Rich was there, visibly upset.  I looked at her ICP monitor and couldn't believe it.  It read her numbers in the mid 40's.  

The mid 40's!!!

It hadn't worked.  The operation didn't do a thing for her.  The doctor came up to us and said, "We did all that we know how to do.  I'm sorry, but  it's up to her now."

And he left.

The nurse told us that we could have family in the room now, as many as we wanted.  That right there told me that they didn't expect her to survive.  The nurse asked me if I would like to call a priest, and I said, "No! No last rites.  I'm not giving up on her."  She then  offered to call the hospital chaplain and he could pray with us, so I said okay to that.

Our family began to file in the room.  Everyone was crying, and they all circled around her bed, touching her foot, her leg, her arm...saying things like, "Hey Audriana....we are here, honey. We love you."

It just about broke my heart.  I stood there, completely heartbroken.  Numb. I didn't talk. I just stared down at my daughter.  How could this be happening?  She couldn't die!  There would be a 4 year gap between Tony and Afton .... a gap where Audriana should be....always....I couldn't not live with that gap.  I could not go on without my daughter.  I couldn't.  I wouldn't.  I won't let this happen.

Mother's Day, 1995

I looked over at her ICP monitor and it was in the mid-40's.  I knew once it got to 50 that would mean there was no blood flowing to her brain, and it would be over.  In desperation, I quickly grabbed my brother-in-law and my two sisters-in-laws (Rich's siblings) and pulled them out into the hall just outside Audriana's room.

I said to them, "Okay, we are going to pray;  very, very hard, and loud.  God will hear us."  

We were all crying, tears running down our faces.

I began. "God..."  I said, loudly, "Please don't take my daughter!  Please.... just leave her here with me, with our family.  We love her so much!  You don't really want her up there in Heaven just yet, anyway....she's such a pain, so stubborn!  She's a handful, is not a good time to take her.  Maybe when she's an old lady and has mellowed some. But not now."  I remember my words got a few smiles from Rich's siblings.  I wasn't trying to be funny or trying to lighten the mood, I was just speaking from my heart, speaking as if I were talking directly to God.

I continued...."Please don't let Audriana die, Lord.  Just....please -- leave her.... with me....."  and I was loud, and I didn't care who else heard me.  I just wanted God to hear me.  I think the others said a few things, too, but I don't remember the words.  I only remember what I said.

A few minutes passed.  We were in a circle, right outside her room.  In the hallway, nurses passed us, other visitors passed us.  I didn't care who saw or who heard, so long as God saw and heard.

The next thing I knew, Rich poked his head out of the curtain that divided Audriana's room from the outside hall, and he said, "Trina!  Come in, quick!  Her pressures are going down!"   I ran into the room, and sure enough, her ICP monitor was reading in the high 30's.   I was almost afraid to be hopeful.   I looked at her nurse, and she said, "'s slowly going down. This is very good, very good."

I knew right then that God had heard me.  I prayed, and I prayed loudly, right there in the hallway of the PICU.  He heard me, and He answered my prayers.  I don't know why He answered mine when I know other parents pray just as hard as me and still their child dies -- WHY is a good question for that, but it's not for me to try to answer.  There simply isn't an answer in this world;  in Heaven, perhaps.  But not here.

I watched as her ICP pressures held in the low 30's.  All her other vital signs were strong.  Everyone was asked to leave the room and once again, it was just me and Rich.  And Audriana's nurse.

The next few days were spent holding Audriana's hand, and watching her ICP monitor go down, down, down.  Finally, in day 5 or 6, it was at a normal range (between 1 and 10)  and they took the monitor out of her head.  I remember being really nervous that I could not watch that monitor anymore, since it was the only way that I could tell she was okay.  The nurse assured me that there are other ways that they can tell how she is doing.

During this time, we had been set up across the street from the hospital at a Ronald McDonald house.  Our family could visit us there and bring the kids.  It was a very nice facility, with hotel-like rooms, and a huge community kitchen, playrooms for kids, a library, and many sitting rooms.  Plus, there was a big yard outside for the kids to play.

One of us was always with Audriana, either Rich or myself.  We never left her alone.  Sometimes I would sleep in the room with her while Rich stayed a night at the Ronald McDonald House, and then the next night we would switch.  At this point, about a week after her accident, they were positive that she was going to survive.  What they did not know was what damage was ultimately done to her brain.  She was still on life-support.  She was still in an induced coma.  It was time to start weaning her off the coma medications, time to wake her up.

It was the "wait and see" again.  I hated that.

While each drug was slowly taken away from her system, we watched for any movement from her.  We watched her eyes.  Did they flutter at all?   Her hands...did they twitch?  After a few days, her eyes opened ever so slightly.  She did not move, but her eyes were just the tiniest bit opened.

"Audriana....are you awake?"  I would ask her.

She did not move her eyes.  But a little while later, she closed them again.  The nurse thought that was a good sign, that perhaps she was "awake" but still unable to move her body.

I was able to talk to her at this point, and I spend a lot of time just talking and singing to her.  I sang, "Tomorrow" from the Annie movie she loved so much.  I could barely get all the lyrics out, they would always make me choke up.  I also sang "You Are My Sunshine" to her, over and over again.  Those two songs will always remind me of this time.  And to this day, they always bring a lump to my throat when I hear them or sing them.

We also attached a cassette player onto the sidebar of her bed.  I played a lot of music for her, so that her room was never completely silent.  Her preschool class had made a wonderful tape for her, of all her classmates talking to her and wishing her to get better, and they sang songs to her.  That tape always made me cry, as I imagined her voice mixed in with theirs, singing those very same songs with them just a week before.

Once I knew she was going to make it through this -- in other words, that she wasn't in danger of passing away if I left the room -- I began taking walks to the hospital's library.  Since Loma Linda was a University hospital, there was a huge library right there on the campus.   I got every book about brain injuries that I could find, and I sat for hours in the library pouring over all the information.  Most of the information was pretty grim.  The prognosis for children with severe traumatic brain injury was so bleak.  Everything I read made it sound as if Audriana would be severely handicapped, both mentally and physically.  According to one book, she might not even wake up all the way and would live out her life in a vegetative state.  Just as that one nurse had predicted.

Finally, one book had something slightly positive to say.  A good outcome for a severe head injury? I couldn't believe it.  There was a photo of a small child face down on a table, with three adults surrounding him.  One adult was holding his head, the other two holding each an arm and a leg.  Under the photo it read:  PATTERNING

I stopped and stared at this photo.  My thoughts went immediately back to a few months before, when I was watching tv with the kids and flipping through the channels.  I stopped when I saw a little boy on the tv, about two years old, being manipulated into a crawling motion by three adults.  He was lying on a table,  and what they were doing to him was a therapy known as "Patterning".

This video is not from that show, but it shows the patterning therapy that I am talking about:

It looked interesting, so I watched the rest of the show.  It was a 20/20 episode, actually, and they were doing a story about an autistic boy who, after having had 3 years of a certain program done on him, came out of his autistic state and went on to lead a normal life.  The parent's spoke and showed all that they did with their son, every minute of the day...some kind of action they did on him, again and again and again....for hours and hours each day, without stopping.  All day long.  Every week, every month.  I remember thinking at that time, "Boy...I'm sure glad nothing is wrong with my kids because I could NEVER do that!!  I could never be that disciplined!!"  and I really meant it when I thought that.  I really did.  It looked exhausting.  I knew without a doubt that I was NOT that good of a mom that I could do that year after year.

But there I was... in the hospital's library, staring down at a page that showed that exact same therapy that I saw on that 20/20 special that one day months before, and I remembered it.  I remembered how the mother of that little boy said that no other therapy was as intense, and no other therapy gave them any kind of hope, that THIS therapy is what helped her boy, and she has seen it help many other brain injured children.  And I just knew right then and there that THIS was the therapy that we were going to do on Audriana.  I didn't know much about it.  I didn't know anything about it, actually, except that it was the only thing that I had found that reported positive outcomes on children with severe brain injuries. If I was going to do a therapy on Audriana, I wanted the one that would be the most productive, even if that meant it was the hardest route to take.

I wrote down all the information that I could, and luckily there was a phone number to the Institute that did this therapy.  I left the library that day with hope.  It was a great feeling.

The PICU  The Pediatric Intensive Care Unit is where we lived for the next six weeks.  It is not a fun place to be.  While I was there, I saw babies and small children come and go, for various injuries.  I heard parents scream from shock and disbelief when they learn their child passed away.  I heard babies cry.  Mothers cry.  I heard small children ask for their mommy, over and over again.  There was one small boy with burns all over his body, and his crying rarely stopped.  I asked the nurse if they could just give him some more pain medication, and she had tears in her eyes when she told me he was already at the max for his size and weight. It was unbearable to hear him.  To this day, I still can hear him.

As I sat by Audriana's bed during the second week, she started to move her finger on command.  That was a great day!  She still had not opened her eyes, but she was weaned off of all medications that kept her unconscious, and so she was waking up on and off during the day.  We could tell when she was awake by her movements.  She only moved the left side of her body, however, and that was concerning.  One day I asked her to put up one finger for "yes", and two fingers for "no"...and I asked her questions.  The nurse on duty that day told me not to do this, that it would frustrate her.  I didn't listen.

"Audriana...are you awake?  Listen, Honey....mommy needs for you to talk to me with your fingers, okay?  Put up one finger to say yes and two fingers to say no."

So then I asked her, "Do you have an uncle named Sam?"  (she didn't)

At first she did nothing.  Then slowly, she raised her left hand up ever so slightly off the bed and put up two fingers.  No.

My heart practically leaped out of my chest!  Did she actually understand me?  Was she in there, afterall?

"Audriana, do you have an Uncle Phil?"  (she did, Rich's brother, her only uncle)

Again, her hand lifted up off the bed and she stuck up one finger.  Yes.

I smiled.  I cried.  My baby was still in there!  She made no facial expressions.  She did not open up her eyes.  But she understood what I was asking her.  Her mind worked!  I was elated.  This gave me much hope.  This was huge.  This is when I knew that God had answered my prayer.

I spent the next few minutes asking her questions about her life and she got every one of them correct.  Then, she fell asleep.  

At this time, she was still on a ventilator.  There was talk about removing the ventilator tube and letting her breathe on her own, but the timing had to be right.  I did not want to be there when they removed the tube.  I wanted Rich to be there.  I knew that he would be the better one to be with her right after that, as she got used to breathing on her own.

Because Loma Linda was a teaching university, whenever the doctors made their rounds to check in on the patients they usually had an entourage of interns and students with them, and they would make us parents leave the room while they were in our child's room.  I always hated being asked to leave.  I felt I had everyright to be in there while they discussed my child.  And I argued and I pleaded my case.  But nope, the hospital's policy was that the parents leave, and I was no exception to this rule.  And we could not simply step outside the room.  On, no.  We had to leave the NICU and go to the waiting area.  Sometimes, though...I would sneak around and just pretend to leave.  Then I'd go back to Audriana's hallway and linger just outside the door, just close enough so that I could hear what was going on.  But I'd get caught by a nurse every time, and then they'd escort me to the waiting area.

What a joke, huh?  Ugh, it irks me just remembering back to that.

Anyway, one time when I was waiting in the waiting area during one of the rounds, they took out her vent tube.  I had no idea they were doing that.  When I was able to go back to her room, I was shocked to see that doctors were still in her room, standing around her.  Then I looked at Audriana.  She was awake and her eyes were wide open (a first) and she was clearly in a panic as she struggled to get air into her lungs.

"What?  What's happening!!"  I yelled.  "Why is she like that?!!"

"We removed the ventilator tube."

"Why did you do that??!!  No one told me you were going to do that today!"

Now, up to this point I had seen some pretty awful stuff going on with my daughter.  But nothing like this.  She could not breathe, she could not get enough air, and she was clearly in a panic about it.  It made me feel so helpless, so distraught.  I wanted to comfort her but I couldn't.

The doctors explained to me that she had what is known as "strider" and that meant that her windpipe was swollen due to the vent tube being down her windpipe for so long.  Being that it was swollen, it was hard for her to get air through it.  They said they would give it some time to see if it would get better, but if it didn't they would make an incision in her neck to insert a breathing tube - a tracheostomy.

I couldn't watch her struggling to breathe.  I needed Rich to be here for that.  I needed Rich, but he was back at the Ronald McDonald house catching up on sleep.  This was my shift.  WHY did they do this on MY shift??!!

I was in a complete panic and so distraught that when I picked up the phone in our room to dial straight to our room at the Ronald McDonald house, I could not remember the number!  It was like a bad dream, a nightmare.  For the life of me, I could not think of the phone number that I had been calling for weeks.  What should I do?

I ran out of her room.  For the first time (except for the rounds)  I left Audriana in her hospital room without a parent.  I hated doing that, but I had to find Rich.  I ran down the hall, out the PICU doors, into the elevator and out the front of the hospital.  I ran through the parking lot and down the sidewalk, towards the Ronald McDonald House.  I ran across the street and into the door and took the stairs up to our room...and I pounded on the door.  Rich answered it right away, and I was crying and trying to catch my breath, and I probably scared him half to death because he knew that I would never leave Audriana's side unless I absolutely had to.

"You need to go to Audriana right now!   She can't breathe.  They took her breathing tube out.  She is so scared! "

"What?!!  They were supposed to talk to us before they did that!"  then he ran out the door, and left me in the room.

I gave it about 30 minutes before I called into her room.  Rich whispered to me that she was resting.  They gave her something to make her sleepy so that she would calm down, and she was resting.  He told me that her breathing was still very labored, and that they are going to watch it for the next few hours.  We just had to take it hour by hour and hope that the swelling in her trachea goes down.

to be continued....

(to read about Audriana's current life, please click on "Audriana" in the TOPICS section in the sidebar of the blog)