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.