RSV: ' The Work of Breathing '

In the book Home Game, Michael Lewis has a short essay on his son Walker contracting RSV at age 11 weeks from his older sister, who, he says, kissed her little brother when she had what was just a cold for her, and he 'promptly lost the ability to breathe.' A short and powerful sentence that underlines how hard this virus is on babies, and how god awful it is to watch your child struggle for breath. Ever had serious 'retraction' going on, which is when they are breathing so hard that you can view the top of their stomach, above the rib cage, sucking in a good inch, their nostrils flaring and the small sweet indents around their neck collapsing inward with each inhalation of air.
In the ER, after listening to the doctor talk about the diagnosis, what it means and what it could mean, he said we could be admitted to the hospital, or go home. We don't know what to do, we said. If it were my daughter, he replied, I'd admit her. We thought we'd be there for a day, maybe two. At that point her oxygen wasn't low. She was having hard 'work of breathing', they call it: how hard is the body working to keep up a normal supply of oxygen, and is it keeping up a normal supply? That night, Mr. Curry stayed up all night watching Ever sleep on my chest, her head bobbing up and down dramatically with each breath, and each breath coming faster and faster. By the next day, she was on oxygen and unable to nurse. Her tiny mouth would suck weakly once, and she would slip back into sleep. She slept for seven hours straight, to exhausting from breathing to do anything else. At this point an IV was needed. It took over the course of an hour, with four different nurses and doctors in Ever's arms, legs, feet and hands before a cardiologist was called in and finally was successful in inserting the IV. Mr. Curry and I took turns rubbing Ever's head and talking into her ear as she screamed as they pushed the needle into her. Later, we had to again let her be poked for blood samples. And later again, for an oxygen vs. carbon dioxide test. She was traumatized and is still fussier, needier and less secure than she was before that day. As the group of doctors and nurses hovered over her and I kissed her cheek, she would find them with her eyes wide open. She would seek them out with those blue eyes, actively looking around until finding a face, and then staring at that doctor or nurse while crying. It was astonishing to me. It was as if she was asking who was doing this to her, and forcing them to acknowledge her. I am here, she was saying, and this is hurting me.
The results of the test came back and were not good. Desirable or acceptable would be in the fifties. Ever's score was in the seventies. The doctor came into our room. We are probably going to have to ventilate her, he said. We asked our questions and he left with Mr. Curry and I staring at the floor, dumbfounded. Our infant on a ventilator? When illness happens this quickly, it is hard for the mind to keep up as a small amount of shock begins to factor in how well your mind is processing information. Two days ago we had a baby with a cold. Now we had a baby on oxygen, unable to eat or even stay awake because her body was working so hard to just breathe, a baby traumatized by repeated stretches of fear and pain who would now most likely be ventilated. We cried.
The worst part of this virus is that babies can just stop breathing. The doctor had said that to us on admission, and I could not stop hearing it over and over. Finally I had the doctor come in and asked many questions about exactly when and why this happens. He explained to me that usually the stop breathing happens before the baby even seems very sick, and we were past that, OR, when the baby IS very sick and works and works to breath and finally their bodies just give up. We didn't have to worry about that, either, because that is why Ever was hooked up to the oxygen and the three 'leads' on her chest which showed us every second of our stay Ever's respiration rate (high), her oxygen (initially low) and her heart rate. The ventilator was necessary when a baby kept working too hard for too long, and the carbon dioxide levels began to rise in their bodies.
A NICU nurse came up into Ever's room after hearing about her case, and recommended we try another treatment before ventilating. This treatment was high pressure room air mixed with oxygen, which went through the machine and up into Ever's nose, in addition to Albuterol every two hours inserted into the same machine and vaporized into the air stream. I had another infant in this situation two weeks ago, she said, and this did the trick.
Thank God, it did for our baby, too. This intervention is what turned Ever around, and finally, her breathing slowed, finally, she began to wake up, to root. The first time I said 'want tootsies?' to her and she turned her head to nurse, I almost cried with relief and joy. She was healing.
My mom showed up downstairs for a visit with the kids, and I left. We did not once let Lola come up to the hospital room. Her anxiety would have been triggered terribly by seeing Ever with the tubes and machines. We told her simply that Ever had to stay in the hospital because they had better snot sucking machines than we had at home, and she accepted this. Working to keep Lola from having severe anxiety was our second job, after keeping Ever safe. We came up with plans of actions and between Mr Curry, myself and my mom- who kept the kids the entire week- we were able to keep Lola feeling safe and busy with play dates, new toys, funny movies, and daily visits with both Mr. Curry and myself at restaurants near the hospital or the cafeteria. Lola and I played hangman, drawing games and tic tac toe. The first overnight, my mom Lola and I sat at Einstein bagels and made a list of happy things for Lola to look forward to in the upcoming days. Since this hospital stay happened the last week of Lola's vacation, I promised her two days off school if she was brave and did all the work I gave her to do to help herself feel good and reduce anxiety. She did a GREAT job ( supported so wonderfully by my Mom ) and is now sitting next to me on the floor on her first day off school.
Only one parent is allowed to stay overnight, but the hospital staff ignored the fact that Mr. Curry and I both stayed overnight Ever's entire stay. After the first night where Mr. Curry stayed up all night, we took turns sleeping. Mostly, Mr. Curry slept in the hide a bed at night, and I scooted the rocking chair and another chair together and made a makeshift bed with pillows and a blanket and slept next to Ever's crib. In the early morning, Mr. Curry would take over and I would sleep on the hide a bed for three or so hours, to wake a few times to nurse Ever. We were absolutely exhausted. Mr. Curry was able to be with us five out of seven days, only working the two days. Thank god we are such a good team. We took turns being overwhelmed or gripped with grief at seeing our Everkins suffering. We took turns giving up and we took turns being strong and we snuck ass grabs and kisses once things got better. The staff was amazing at Kaiser pediatric unit. The nurses by and large were intelligent, on top of it and totally kind and supportive. We had two doctors who impressed both of us with their intelligence, information and bedside manner.

This was one of the longest and worst weeks of our lives, and I am thankful beyond words that it is over. There were cancer patients on our pediatric ward, and I thought of them as we left. The freedom to scoop Ever up, finally free of the many wires and leads that had left us only able to hold her within one foot of the crib, is such a blessing, one that many other parents are not experiencing as their child battles a more serious disease. The curtain fluttered and lifted for us this week, but gently rested back down. We do not take this gift as our right or for granted, but realize it is but luck, but a random blessing, and no matter how hard life gets, we are never unaware of the deeper and most important blessings we have.