I picked Leta up from school for her holiday break this year after Camphill’s traditional Waldorf Christmas craft show, and she did not seem well. The color in her lips was bluish grey and she was listless. I rushed her home fearing the worst and checked her oxygen levels but her oxygen saturation was normal. Then in the middle of the night Leta began throwing up violently. I worried I might have to take her to CHOP, but by the morning she seemed completely fine again. Leta’s lung disease is unpredictable and at times her medical status changes rapidly. As quickly as she seems dire, we see her bounce back, no hospital intervention necessary. And by Monday the color had returned to Leta’s face and she was her usual high energy self, rocking out with me to Adele’s “Rolling in the Deep.” We were in the car headed to Kenny’s house in Delaware for the day so I could do some freelance work in Baltimore. But by 2p, Kenny called with concerns. Leta was making funny noises and was acting sluggish. I raced back to pick her up, saw her bluish grey lips. She was in serious respiratory distress. Leta needed to get to the emergency room and get on oxygen as quickly as possible. CHOP was 20 minutes away. Once we were there, X-rays and blood tests confirmed she had RSV, a very dangerous respiratory virus that attacks the lungs. Her oxygen sats were low but Leta was getting the care she needed and was content in my lap. What once used to terrify me has becomes commonplace routine in my life with Leta. And 8 hours later, as is often the drill at CHOP, we were wheeled from the ER to the PICU to spend a night, or two or more…, I took an artsy picture of Leta sucking on her air like the caterpillar from Alice in Wonderland and posted it to Facebook. My 3am status when the rest of the world is sleeping. Two days went by and although it was clear that Leta would be spending Christmas at CHOP, life trudged on at home as usual. Jack was back from college, the other girls were out of school, and they were all decking the halls for Christmas; decorating the tree, shopping, wrapping,and eating lots of candy.

Back at the hospital was also unremarkable. As always, Leta was not happy being in patient and was giving all the nurses a run for their money. She is a difficult patient to treat. because she refuses to keep the various life saving devices on. The oxygen canulas that is supposed to blow air into her nose, she rips off. The IVS that hydrate her and pump the necessary antibiotics and other medications into her arms, she pulls off like a band-aid almost immediately after they are put in. And because of her defiant behaviors, she requires round the clock care. The third night of Leta’s hospitalization I slept with her in her bed, not really sleeping, more like resting with one eye open to desperately try to prevent her from pulling out her IV or oxygen. 7am Christmas Eve morning I was exhausted, just thinking about how to get a cup of coffee, when Leta’s alarms started beeping wildly. I looked up at the monitor and saw her oxygen levels dropping rapidly. In seconds I watched it go from the 90’s, to the 70’s, then to the 60’s, then 50s… but no nurses were coming in… I jumped off the bed and began banging my fists on the glass partition and screaming, “Call a doctor, NOW” I …. I looked back at the oxygen monitor and it read 30%. A nurse ran in, assessed Leta, and hit the CODE BLUE button on the wall. Leta was not responsive. This was really happening, I texted her dad, “CODE BLUE!” so he knew to get down to CHOP immediately. The room filled up with doctors and nurses. While one nurse began manually bagging Leta to force oxygen into her lungs, the lead doctor started asking me questions. But I felt light-headed and sick to my stomach and was having a hard time concentrating on his voice. I knew the doctor was asking me for consent to intubate Leta but all the other sounds in the room were so loud it was hard to focus. “We need to do this NOWWwwwwww…!!” the doctor seemed to be screaming ….” of course there are riskkkkks….she could go into heartttt …failure……but we have no other options.” I nodded my head in consent. But I thought I was going to pass out. Everything was suddenly in slow motion; my adrenaline rush so intense I felt like I was having an out of body experience. Her dad walked in and glared at me. Why the anger? Not what I need right now, but he hadn’t believed my earlier text, until the doctors had called him. I looked at my phone and I apparently was an asshole for crying wolf so early in the morning. At least He did not disappoint in ramping up our dysfunctional textual warfare even now.
For the next 10 hours he and I were forced to share the same physical space but we might as well have been on different continents. We did not speak to each other or even glance in each other’s direction. He occupied a chair near Leta’s bed, his face down in his hands. I perched on a window-ledge, mindlessly trolling Facebook and reading the AP and CNN newswires. I posted a status update that Leta had taken a turn for the worse, and asked friends to pray for her. I did not have anyone in the hospital to hug me or hold my hand, but almost immediately I had friends around the world responding with concern and an odd but incredibly comforting social media prayer vigil for Leta began; “Facebook Love” when you don’t have it in real time. I was embarrassed by all the attention but glad to have the support. It took the doctors five hours to get Leta safely on the ventilator. At that point, Rick and I paced the halls and he broke the silence…a detente perhaps? Nope, just him announcing that he was leaving to go get something to eat. It did not occur to him to offer me anything. Alone again, my mind wandered to that dark place where I imagined Leta not surviving the night or passing away Christmas Day. I considered calling the other kids to tell them to drive down to see Leta one last time, but I decided to wait. Is this how her story ends? Luckily no.

Leta remained on the ventilator for two more weeks. The other kids came to visit often, especially Jack who would crawl into bed with her and hold her hand. But Leta was so heavily sedated that she was more machine than child. The kids pretended to be stoic, but I knew inside they were scared and struggling. Their sister’s life was hanging in the balance and completely at the mercy of the machines. This was such a big dose of real life for my kids to handle.

Outside the PICU time marched on as usual into The New Year. The girls started back at school and Jack returned to college. And at CHOP Leta continued the fight each day to take one or two breaths above and beyond what the ventilator provided. Her strength gave us all hope. On January 10th, her doctor was adamant that we had to try to extubate her immediately. Leta began riding the vent, not breathing on her own above the machine. She was also retaining too much fluid which made her face and arms balloon up, and and she was increasingly at risk of a central line IV infection. In my mind, she did not seem well enough to be making any changes, but apparently we did not have a choice. Getting her off the machine was now the priority even if there were risks. After a weekend of hesitations, Dr Wuu finally pulled the tubes out on a Sunday afternoon. He wanted to make sure that he did the extubation that day before the shift changed and a new attending doctor, less familiar with Leta, clocked in. And once extubated, Dr Wuu stood by Leta’s bedside for 4 hours, holding the oxygen mask over her face and watching her intimately as Leta took each breath on her own. Even though Dr Wuu’s shift was over, it was clear he was not leaving until Leta was out of harms way and did not need to be re-intubated. He remained in the hall, under the guise of writing notes, but we knew otherwise. He steadfastly watched over Leta for another 5 hours. And because of his vigilance and the continued watchful eyes of nurses into the night, Leta made it off the ventilator successfully.

That night as I drove home along the familiar path of Boathouse Row on the Schuylkill River, I burst into tears, crying so violently, I was gasping for air. Eventually, I calmed down, my breathing settled and I was able to take deep breaths again. Probably the first real ones I had inhaled all month… It felt like I had been holding my breath this past month, waiting for Leta to get off the machines. And now we could both breathe again.

I am humbled by the tremendous medical care at CHOP that enabled Leta to survive this ordeal. I know she came very close to a dramatically different outcome that I am thankful I am not writing about. When friends ask me what I did over Christmas break, I tell them that I went bungee jumping, rock climbing, skydiving and white water rafting. In other words, I spent a month in the hospital with Leta on life support. And not unlike other close calls these past 17 years, we peered over the edge of the cliff, but this time we jumped, a Code Blue free fall….our only net was the doctors, and the power of prayer for Leta to survive. If you were holding Leta in your prayers this past month. Thank you. It worked. xo