Showing posts with label PICU. Show all posts
Showing posts with label PICU. Show all posts

Monday, September 5, 2011

Our Day In Hell Part 6 – A Come To Jesus Talk

India has always attended public school with the only exception being when she was away for therapy.  We’d always wanted to give her the opportunity to learn as much as she was capable of and have lots of social interaction with other children.  We’ve experienced many highs and almost as many lows with the New Mexico school system,  fften finding ourselves having to deal with the red tape and battling the mind-numbing bureaucracy and its tenured minions.  At the same time, we’d encourage and if possible reward the positive aspects of the system.  This was a full time job, not for the faint of heart. There was an event that will haunt me for the rest of my life.  It was one of the few times in my life that I actually felt violent and wanted to inflict harm on another human being.

We placed India in an old and relatively small elementary school in the town of Mesilla, New Mexico.  The surroundings were beautiful, with thousands of Pecan trees surrounding the campus and the historic Rio Grande River flowing just west of the school.  A couple of minutes to the north was the jail where Billy the Kid was kept after he was caught for the last time.

At first all seemed fine—it took some adjustment for India but that was to be expected.  But after awhile, we noticed India becoming agitated and then depressed.  We couldn’t figure out what the hell was going on.  We didn’t necessarily suspect the school was the root of the problem but we checked anyway, several times.  We’d come down to the school to see how our daughter was doing.  Every time we paid a visit, India would be out in the playground with other children or in the classroom working on a project with at least one other kid.  It couldn’t be the school.  We wondered if her depression came from a new realization of her physical condition, a chemical imbalance, or something else that we couldn’t see.

The school year finally came to an end, summer was upon us, and India was back to her old happy self.  We were relieved and went on with life and had a great summer.  We spent several weeks at the beach in San Diego, went to the mountains in Colorado, and watched more movies than I care to count.  But as summers do, this one came to an end.  It was time to brave the long lines at the local store and stock up on the new semester’s school supplies.

As we were shopping for the new school year, we happened to run into the teacher’s aide from the previous year.  We greeted each other and had the usual small talk; how was your summer, are you excited about the new year, when are you going to get your teaching certificate, etc.  I noticed that she looked a bit nervous as she was talking to us but I didn’t pay much attention to it.  To our surprise though, she dropped the bomb of all bombs on us very abruptly.  This young assistant almost broke down and cried, right in the middle of the store when she said, “Listen, I have to tell you something.”

She went on to tell us that she couldn’t live with herself if she didn’t tell us what had happened the semester before with India.  She said that she’d wanted to tell us during the school year but she was too afraid.  She told us in detail how India’s teacher would put her in the corner of the classroom all day in her wheelchair, the brake on so India couldn’t wheel herself back to the children.  India would have to sit there as she watched the other children do art andmusic, have snack time, and socialize.  My little girl was forced to just sit here and watch. She was not attended to or allowed to interact.  When it came time for recess, she would only be taken out into the playground part of the time.  When she was taken outside, she was placed against the wall by the door and left yet again all by herself to just watch the other children enjoy their outside time.  My daughter had been neglected and abused by her teacher and the administration of the school did nothing.  And as when India experienced the painful sticker embedded deep in her skin but couldn’t tell us, she again was in a painful situation, helpless and unable to let us know what was going on.

The aid went on to tell my wife and I that every time the teacher would  see us coming, she’d quickly make sure that India was put with a group of children and made it look like she was included in whatever project they were working on.  If it was recess time when we’d arrive, the teacher would roll India’s chair into the middle of the playground and pretend to be play with her. 
I stood there in the middle of the store, staring at this young lady as she gave us intimate details of the neglect and abuse inflicted on my daughter.  By this point, she had tears running down her cheeks.  I don’t know how Veruca felt but I was a moment away from running out of the store, tracking down this teacher and beating her to death.  I was a ball of rage, my heart was pounding, my adrenaline was pumping, and my eyes were full of tears. 

To this day, I can’t tell you what the fuck this teacher was thinking or why she did what she did; I can only assume.  It’s my assumption that she had little empathy, no compassion, and was too lazy to do her job.  I don’t want to believe that she was just sadistic.  Either way, she had and has no business being a teacher of our children, no way.

As we drove home, we didn’t say a word.  Our heads were spinning from the news we’d just received.  The only thing I can possibly compare this to is most likely how a parent feels when they find out that their child has been raped.  How the hell could somebody do this to a helpless child, especially an educator and the trusted administration?

That very day, we filled out the paperwork to transfer our daughter to a newer school on the opposite side of town.  We made some inquiries to ensure that the previous year’s abusive teacher hadn’t transferred to this new school and scheduled a meeting with the new teacher, her aid, the entire administration, and the heads of the school district.

On the day of the meeting, I felt calm and focused as I put on my best suit and tie, placed my recording device and legal pads in my brief case, and headed out to have a “come to Jesus” moment with the Las Cruces public school system.  By this time in my career, I was very well known in the community and had acquired quite a bit of wealth and power.  As a matter of fact, the new school was surrounded by my development projects and the entire area was plastered with my real estate signs.

We convened the meeting at the new school’s conference room. Every seat was taken and a few people were forced to stand.  Veruca and I sat there as we listened to the administrators give us their canned and legally sanitized speech about the benefits of this school and how India would thrive here.  It was basically what the previous school had said to us.  I really wasn’t listening, just looking at the administrator’s lips while they were moving, as she mechanically blurted out words she’d clearly used a thousand times before.  I waited intentionally until the administrator was reaching the climax of her memorized dialogue.  Then I interrupted abruptly.

“Ma’am, I think it’s time for me to convey something very important to you and the rest of the people in this room.  I also expect every person here to convey what I’m about to say to others in the school district.  My daughter was neglected and abused last year at her previous school.”

I went on to give every possible detail and the impact it had on our daughter and the rest of the family.  Every eye in the room was fixed on me, unblinking. They were caught completely off guard.  I could sense that the teachers and therapists in the room were horrified and in disbelief at what they were hearing.  I knew for sure that the administrators were getting that terrible sinking feeling as I took the time to glare at each and every one of them while I was talking.

After I described what had happened, I went into attack mode.  I started my next sentence with “My name is Nick Rank,” (everybody knew this but it was for effect) “and I need to make sure that each and every one of you know that if something even remotely like what happened at last year’s school happens here, I’ll not only sue the school district but also the teacher, assistant, and administrators individually.  My family and I have many resources and will put every last penny into making your lives a living hell if you don’t do your job and look out for my daughters’ best interests.  I will hire a public relations firm with the directive to ensure every media outlet possible in the western United States runs the story of what’s happened.”
'Before I knew it was happening, I had tears flowing down my face as I said to the room, “My children are my life and India is unable to fend for herself, she is exposed and helpless.  She didn’t ask to be the way she is.  This little girl wants to play, interact, have friends, and learn.  Mentally, she’s just fine so when she’s excluded and kept in a corner six hours a day, she processes it just like any other kid would, she just cant express her sadness verbally.  Please don’t do this to my baby again, she doesn’t deserve it, she’s not a monster.”

I looked up to see every person in the room staring at me; some had tears rolling down their cheeks.  The head of Special Ed said in a very quiet voice, “This will never happen again, I assure you.”  Then India’s new teacher, who was one of the people who was crying, said that she would look out for my daughter, love and include her in everything.  She said it sincerely and it came from her heart, I could feel it.  She is still a friend to this day, a beautiful person who kept her word and gave India a wonderful school experience over the next year.

As a final note to this chapter, I have to say that I can’t begin to imagine what I would have done in this situation if I hadn’t had the resources, contacts, and power that I did.  If I were a fry cook or had some other minimum wage job with no resources and a disabled child who was being neglected by the school system, we would have been screwed.  I see it happen all the time.  The system chews up and spits out families all the time.

Tuesday, April 27, 2010

"PICU" - Our Day In Hell - Part 2

The nurses and doctor who’d just left the room came tearing back in, eyes wide open. This scared the shit out of me because I could see that they didn’t expect this.  And to make matters worse, they clearly didn’t know why she was having another fit and not breathing.  India’s little body was already saturated with high doses of anti seizure medicines, this shouldn’t be happening! India lay there, body stiffening, barely breathing, as the doctor frantically worked to get her breathing again and stop the seizures.  There was not a goddamn thing Veruca or I could do but stand there and helplessly watch.

I was across the room from my wife. I took my gaze from India and looked over at Veruca. She was standing there, tears flowing down her cheeks, a pitiful look on her face; she was broken. As I watched her, it hit me just how devastating this was for Veruca. She’d glowed through her pregnancy, Veruca wanted to be a mother, she loved India the minute she knew she was pregnant with her. Now Veruca’s life was being ripped apart in front of her eyes; her daughter was dying.   

By this point, India had somewhere like twelve intravenous lines piercing her delicate skin. They were in her head, arms and legs.  She was on a ventilator, she couldn’t breathe on her own, and it was a horrible scene. She had swollen up so badly that neither Veruca nor I would have recognized her. Her eyelids would occasionally lift only to reveal eyes staring off into nothingness or worse, rhythmically twitching. I remember that each time her eyes opened, I’d lean over my baby, hoping that there would be something there other than the all-too-familiar blank stare. Each time she didn’t respond to me, it became more and more devastating to my spirits. The despair was beginning to get the best of me. 

For the next few days, my little girl would continually crash and I’d hear that horrifying tone screaming from the monitors, followed by the sounds of the medical team.  Every single time the nurses or a family member would talk me into taking a nap or a walk down the hallway, I’d be jolted from my brief respite by the sounds of my daughter failing. I became afraid to sleep or even walk out of the room. My fear of going to sleep or leaving India alone took me years to get over and I still don’t think I’m completely recovered. I’ve been told that I have Post Traumatic Stress Disorder from this experience. I’m not much a fan of this kind of diagnosis but I do believe the doctors got this one right with me. 

Specialists were called in to try to figure out what was going on with India. I sat there and watched as they talked, tested and talked more in a medical language I did not understand. They finally decided that they needed to put India on more aggressive anti-seizure drugs. The physicians explained to us that they had to get her seizures under control before they turned our little girl into a vegetable or worse, killed her. 

I’d say I was devastated during this time but this word doesn’t clearly describe how I felt.  I’m not a smart or articulate enough man to be able to properly describe the feeling that was taking place within me. I’d not slept in days, hadn’t eaten a thing, and had watched my little girl rapidly fall apart, to the point where these doctors were now using the words “vegetable” and “dead” openly. 

The thought of having a child that was a vegetable stunned me. How would I cope with this? What would happen to my life? And what if she died? I’d connected to this little life in a way that I’d never imagined. It was a deep love that I’d never known before. I didn’t want to lose her. I didn’t want a child in an institution, I couldn’t do that to my child. This meant she’d be bedridden in my home for the rest of my life. I was too young to experience this.  How was I going to afford this? I’d already had my issues with God but now they just became worse. As far as I was concerned, God could go fuck himself. No deity would do this to a baby!

At the same time, we were very fortunate we had so many family and friends at the hospital to support us. They were shocked when they saw how badly Veruca and I looked. I can remember the look on each one of their faces; they’re burned into my mind. I can’t even begin to describe the looks on their faces when they saw India. Every single person had an intense emotional reaction, absolutely every one of our visitors. Some couldn’t look at India and had to turn away. As a society, we’ve become callous about sad, violent, bloody, and aggressive scenes. What we’ve not become callous about or accustomed to is the sight of an infant in such bad condition. It brings down the biggest and strongest of us in a heartbeat.

My grandmother, who raised me, came as soon as she found out what had happened. I was closer to her than any other human on this planet. I named her “Bama” when I was a child, it was a nickname that stuck and it became who she was known as. When my Bama walked through the door of India’s room and I saw her face, I broke down and started sobbing. I was holding onto her like I did when I was a little boy, trembling, unable to control my emotions. I wanted Bama to make everything ok; I wanted her to take me away from this. Bama did the best she could; she held me, talked to me, and loved me. Her presence made all the difference in the world. The presence of so many amazing people during this time allowed us to make it through this surreal experience.

After a few days, the doctors told us that they needed to do two things with India in the coming hours. The first was a battery of new tests to try to figure what was going on with her brain. They needed to determine if she was having seizures that weren’t currently being detected. The second was to put an intravenous line into my daughter’s femoral artery. India’s body already had a dozen intravenous lines but they were mostly ineffective; her veins were too small and they needed to tap an artery.

When it was time for India to have the intravenous line put in her femoral artery, we were told we had to leave the room. They told us this was a minor surgical procedure and we couldn’t be present. Veruca and I sat down with our family in the Pediatric Intensive Care Unit waiting area down the hallway. It was very uncomfortable. We personally had over a dozen people in the room and there was also a large Navajo family there, waiting for a relative to recover from a surgery. The room was packed and nobody was really talking to each other. To make matters worse, an uncle of mine who has no boundaries was openly making bad Navajo jokes and talking loudly using a Navajo accent; it was a tense scene and I hated it. 

As became the norm, just as Veruca and I settled into the waiting room, India’s little body began to fail. We could not go anywhere near India’s room so we had to stand out in the hallway about 20 yards down and watch the scene from afar. 

Doctors and nurses were rushing in and out of India’s room. Two nurses came flying around the corner with a crash cart. Then a nurse came out with blood all over her hands, pants and blouse. I became sick to my stomach and began to sweat profusely. It took all my strength to hold back from puking, how could there be so much blood coming from India’s tiny body? I fell back against the hallway wall and slid onto the floor; covering my eyes from what I was seeing. All I could do was sit there, helpless, sick, and drenched with sweat, not knowing why this was happening. I was wide-awake in a living nightmare that would never stop.

Looking back, I’m glad that I had no idea that things were going to get much, much worse. I don’t think I could have handled it if I’d known.

Wednesday, April 21, 2010

Our Day In Hell Part 1

India was born 1998 in New Mexico. She was born a healthy little girl, all her fingers and toes. India had lots of hair and beautiful eyes. She took almost 24 hours to come into this world and when she did, she was greeted with lots of love.

I never expected to have children so this was a very remarkable day for me. I was married and had a child; I was a new person. 

The day we took her home was beautiful, warm, with no clouds in the sky. We were nervous and overly cautious as we put our precious baby girl into the car, double-checked everything, and then checked again. I noticed some nurses watching us with big smiles on their faces. I’m sure that this scene was played out daily as new parents prepared for the first journey home with their new addition.

Home was different with India there; it was brighter. We had a steady stream of visitors who wanted to meet this new little person. This was a nice time that brought people together, not to mention the truckloads of good food that were delivered to us.

After a few days, I went back to work.  I was ready and very eager.  I worked for a commercial real estate firm; I was newly in the business and doing my best to absorb everything.  

During the 3rd week India was home, my wife came to me with concerns about our daughter’s temperature.  She told me it was just a little high but she wanted to check with the doctor to be safe.  I wasn’t worried at all, India’s temperature was only a couple degrees above normal, and she was happy, alert, and active.  I also wasn’t very concerned because my wife was a hypochondriac as well as   an obsessive diagnoser of medical conditions.  I’d gotten used to her doing this all the time so I’d learned to ignore and even laugh at it.

When Veruca got off the phone with the doctor, she said that he’d instructed to take India to the hospital emergency room.  Not because it was an emergency but because it was a weekend—no doctors’ offices were open and the emergency room was the only place we could go.  I knew that the doctor also was telling us to bring India to the hospital instead of telling us to bring her to see him Monday morning because of liability issues.  If he told us to wait until Monday and something did go wrong, he was afraid he’d be sued.  

I questioned the logic of taking India to a hospital emergency room for such a minor reason but my wife insisted.  We loaded up the car and headed to the hospital, the same hospital where India had just been born.  Little did we know that we were about to endure the most gut- wrenchingly painful time of our life.  Nothing would ever be the same after this day.

When we got to the hospital a doctor started examining my baby girl.  She did what seemed to be normal and routine checks.  The mood was light and I was sure we’d be sent home shortly–until the doctor said she was going to perform a spinal tap on India to test the fluids for any sort of infection.  I remember asking why we needed to do such an invasive procedure; my little girl only had a very mild fever.  The doctor told me it wasn’t invasive and would only take a minute or two, it was standard procedure, and we’d be on our way before we knew it.

The doctor and a nurse prepped my baby for the spinal tap.  It was a very intense sight, my tiny girl, only three weeks old, sitting on a table, slightly hunched over with blue surgical cloth on her back for the exception of the area the needle was to be inserted into her spine.  Happily making beautiful baby sounds, she had no idea what was about to happen.  I was already having a rough time, just knowing that my little girl was about to be in very serious pain.  I was also terribly torn between the instinct to respect a doctor who was supposedly a professional and my instinct that this procedure was completely unnecessary. 

The procedure was heartbreaking.  India immediately winced in pain and began to whimper.  Her whimper rolled into sobbing, then screaming.  She’d never made that noise before and every atom in my body was hurting with her.  But it didn’t stop.  This procedure that was supposed to take just a minute kept dragging on and on.  I could see and hear the nurse starting to look concerned.  The doctor said, “No, I’ve never done this on an infant before.”  I was stunned and I could see and feel the nurse tense up.  India was trembling, screaming, bleeding gruesomely as the doctor started on her fourth attempt to puncture my daughters’ spine.  I told the doctor and nurse to stop but the nurse spun around and told me to leave the room. 

My mother-in-law took me outside into the hallway with my wife.  I was frantic and had no idea what to do.  It was a horrifically helpless feeling that I’d not wish on anybody.  A few minutes later, the nurse and doctor came out and said they were done.  The doctor didn’t look me in the eye and she couldn’t get away from us fast enough.  The nurse had India in an infant cradle. her small, pale face was swollen. 

After the doctor and nurses cleaned up the blood and the tools used for the procedure, they sat us down to tell us that they felt it was in our daughter’s best interest to stay in the hospital for the night so that they could monitor her.  By now I was furious with myself.  I hadn’t had the guts to tell Veruca “no” when she wanted to go to the hospital for such a minor thing.   I hadn’t had the balls to tell Veruca to put her mania for diagnosis in check and I’d hadn’t had the sense to tell the doctor “no” to the procedure.  I’d never been in this position before and I didn’t know better.  I’ll forever blame myself for my failures and the consequences thereof to my baby girl. It was this terribly blotched and unnecessary procedure that crippled my child.
They put us in a standard hospital room.  They said that they’d come in every couple of hours to check on India.  I was emotionally and physically exhausted,, and I fell asleep immediately on a small cot .  It like only minutes later that Veruca woke me up.  She thought India was having a seizure.  I was sick of Veruca and the position she’d put us in.  I told her not to worry and that I’m sure India was fine.  Just a minute later, Veruca said in a higher pitched voice, “It’s happening again!”  I jumped up and saw  that my baby’s arm was erratically and she wouldn’t wake up.

We buzzed for the nurses over and over.  They kept saying they’d be right in but no one came.  I finally ran down the hall and yelled at the nurses—who were sitting at their station talking—to get their fucking asses into my room. They sprinted down the hall to find Veruca crying and India having a major seizure with her vitals crashing.  

All hell broke loose. A code was called and a team rushed in with a crash cart.  India was spiraling down.  The nurses grabbed a gurney, put India on it, told us to follow them, and ran full stride towards the elevator. A doctor joined our group and started checking India’s vitals. In the elevator it was chaos.  The ride up to the pediatric intensive care unit was terrifying.  Everyone was so frantic doing this and that but no one noticed when India stopped breathing.  I said, “She’s not breathing.” Nobody listened to me.  I said a second time, louder, “My baby’s not breathing!”  The doctor looked, saw that India wasn’t breathing, and started shouting orders to everybody.  The nurse was trying to administer the anti seizure medicine so the doctor turned to me and told me to start pumping air into her lungs with a hand held CPR device. I was in shock. 

I was looking down at my little girl, who just a few hours before was smiling at me and making the most beautiful noises.  Now, she wasn’t breathing and I could hear the nurse say that she could barely get a pulse.  I was in an elevator helping to keep her alive and it couldn’t have felt more like a terrible dream.

When the elevator doors opened to the pediatric intensive care unit, we were met by a pack of nurses.  I found myself following them as they pushed my baby into a room and begin frantically working on her.  I don’t remember how long they worked to revive India but it was quite a while.  When India was stabilized and the doctors and nurses left, I sat down next to my daughter.  I held her little hand; I gently touched her cheeks and then tried to make sense of everything that had happened.  I cried a deeply, until I couldn't cry anymore.

As the sun was rising, India’s vitals were good and none of the rhythmic seizing movement in her arms was happening. I can clearly remember taking a deep breath and feeling like the nightmare was over; it was a new day.  I felt so fortunate to have my baby with me; she was alive.  The nurse came in to explain what had happened and what they were going to do.   I barely understood most of what she was saying—I was traumatized, exhausted, and had never heard most of the medical terminology she was using. 

The nurse left and I sat down and absorbed what I’d just heard.  I did understand the nurse to have said that India’s seizures were under control and everything should be fine now.  My head was in my hands and I felt like my body was going to fail me from exhaustion.  I looked up to see how Veruca was doing but what I saw paralyzed me.  India had one arm perfectly straight and off to the side, the other was curled up, her head was turned to the side, and her eyes were open and staring off into space.  The rhythmic movement was back and much worse than before. Once again she was seizing terribly.