Thursday, August 18, 2011

Hospitals. Part 2

After I left the surgical oncology job at the hospital, I went to a different sort of nursing job. I am not in the hospital every day. In fact I spend most of my time in a donor center, doing paperwork and drawing platelets from donors. There are a few other nurses and we take turns going up to the hospitals and performing therapeutic apheresis. It's not very much like dialysis, but it is. It is used to treat a lot of autoimmune disorders. It is also often used as a last ditch effort. I saw it on "House" a few times, if that gives you any idea. It's not the most common procedure and many of our patients are flown in from out of state. I've been at this job for seven years, and I expect I will be here for the rest of my career, if things stay the same.

At first I missed the hospital setting. I missed going room to room and I missed wound care. (yep.)

Then, after being at my new job for 6 weeks, I found out I was pregnant.

Thank goodness for that job. Thank goodness I left the oncology ward when I did. There isn't any possible way I could have coped with what was to come if I were still trying to work nights and feeling afraid and pressured and on my own all the time. It's just another reason I know God is in the details.

Of course, I was pregnant with Charlotte. A few weeks later I received that phone call at work that changed the world. Things weren't right with my baby.

The hospital, over the next 4 years, became a very different place than I had known. As a nurse, you go to work, you become deeply involved with your patients, you go home. It is, in the end, still just your job. Having a sick child is not that same.

It is 24 hours. It is living in a state of constant stress, senses always at the ready, never dipping more than inches below the surface of sleep. That deep warm blackness below is not for you, because you have a sick child. You can't afford to sink in, even for a moment. Except sometimes, under the constant monitoring and overwhelming exhaustion at the hospital.

The hospital became all places. It was home, it was hope, and it was hell. Our first big staycation there was after I received that dreaded phone call at work, that Charlotte wasn't breathing. She was there almost a week, and they tested her blood, her brain, and after every test I hoped they would find something that could be fixed, hopefully with simple medication. All they found was worsening pulmonary hypertension, and she came home on 24 hour oxygen which she had the rest of her life. When they brought us the tank I cried into my husbands chest. I could not imagine how I would handle a baby on oxygen.

Charlotte spiked a major fever and went back to the hospital soon after. It was a kidney infection, and further studies showed a crazy urinary system. She went on permanent antibiotics. Sometimes I ran into nurses I had gone to school with. It was so bizarre to be on the other side, to be a patient where we had once both been students. She would be in her scrubs, her gloves donned, smiling behind a mask and I would squint at her in the dim light without my contacts in, face dotted with zit cream and wearing rumpled pajamas. Once I became overwhelmed and left to walk the halls in the middle of the night, looking out the window at the end of the hall at the city below, marveling at how different the hospital feels on the other side.

The hospital is frustrating. Everything takes forever. Nothing gets done on the weekends. A doctor will promise to come discuss results and options with you and you will wait all day, afraid to leave the bedside for a plate of nachos, and they will never come. No one understands your child and they label them. You can tell the ones who feel like it's not worth their time to treat your child. Your child who will never become president or discover the cure for cancer. Your child who will always, always be a child.

The hospital is terrifying. I have watched Charlotte's breathing become more and more labored, waiting for hours in the ER, until what might have been stayed with high flow oxygen or perhaps c-pap now requires intubation and a lengthy ICU stay. I have shivered on the floor of the dark PICU waiting room with my husband, having been sent away so they can try and save your daughter's life. I have sat in the surgery waiting room alone, there for a simple hearing test and without my family, to have the doctor enter the room and pull me quietly into the private consult room, to tell my my baby's heart just stopped. I have heard that quiet knock on the sleep room door to summon me to her bedside. The bedside I left hours ago dark and peaceful now flooded with lights and surrounded by people in masks, alarms and lights flashing. I have called my husband, in the middle of the night in a major snowstorm, to tell him he had better hurry because Charlotte is not doing well. It is surreal. It is exhausting.

The hospital is incredible. There my daughter was pulled from the brink of death time and time again. I have heard her tiny raspy cry for the first time in weeks after being extubated and thought it was the most beautiful sound. I have seem my daughter's skull reshaped in a day which brought about bounding leaps in her development. I have attended the most amazing spiritual church services there, I have met the most amazing mothers, nurses, doctors.

The hospital, still, is cozy. Sometimes it is the only place where you can rest. After trying your best to stay at home, to fight the fever and the congestion for long sleepless nights, to finally give up your child to the nurses with the equipment and the monitors and the drugs and to lie down on the most uncomfortable lumpy chair in the universe wrapped in quilts donated by youth groups and just fall into a dreamless sleep...sometimes it is the most deeply you have slept in months. To hear the raspy breathing finally quiet after the respiratory people leave. To finally feel it is safe to rest.

And, yes, sometimes it's okay for a few days to stay in your flannel pants and watch daytime TV in a rocking chair holding your baby, eating donuts you've looted from the hospitality cart. Sometimes, after all the stress, it's okay. You watch your baby sleep and take dozens of pictures. You surround her with toys and balloons and make a trip to buy ridiculously expensive super soft microfiber jammies for her to wear from the baby boutique. They are brown trimmed in pink. You decorate with pictures of your child when she is well, so the nurses know how gorgeous and happy she usually is. Friends bring in a small fake Christmas tree the nurses keep telling you to send home, but you don't. You bring a pile of books and pillows and eat things you would never eat at home. Basketball and hockey players come and wave awkwardly from the hall. You wear slippers. You gain a pound a day. People bring you sushi and smoothies. Friends come for a visit after work. They spend New Year's with you eating cafeteria frozen yogurt. Your baby starts smiling again, and the cultures don't grow anything, and you know everything will be fine. And it's cozy.

The last time we took Charlotte to the hospital we walked into packed emergency room. There were people up and down the halls coughing, kids in footie jammies. Charlotte was hot and limp and still, we almost walked out. It seemed so hopeless in there. But the nurse beckoned us forward, and took us right back, past the waiting masses. We were so grateful. The virus panel came back fast and it was RSV, and I was relieved. It wasn't heart failure. It was something to support her through and it would end.

I was at the hospital, three days later, when I knew we weren't going home this time. From that moment the hospital became the site of all Charlotte's lasts. I was puffy and sore and all cried out. Things slowed down. I had time to take in all the last moments, but even when the doctors were optimistic, hopeful, I knew. I still paid close attention, because I knew these were the last.

Charlotte's life began and ended in a hospital room surrounded by her family, being held, and passed around, and loved. Charlotte's hospital room was never short on love. And that day her room became the gates of heaven. You couldn't quite see them but you could feel it. And the hospital had never been sweeter.


Alex said...

You're a fabulous writer and Charlotte was a fabulous girl. Xoxo.

Sarah B said...

I loved reading these. Of course hospitals are neither all "good" or "bad," but a backdrop for life (and death), which is far from perfect, and yet so incredibly rich. I'm glad you were able to experience your time with C far beyond what others might sum up simply as "I hate hospitals."

rick & chrysi said...

You don't even need to write a book just publish your blog. I'll buy it.

April said...

Oh Erin, that post was so beautifully written.... I can so relate to your experiences.... love you!