The Lightning Bolt and the Rainbow

Mark’s back in the NICU.

Tuesday morning when I came in, Mark was way below baseline. He was lethargic and blinked quietly when asked questions. I watched him. “His eyelids are doing this slight flutter,” I told the nurse. She watched him for a few minutes. “I’ll page the doctor,” she said. He had just come back from a CT scan, and within a few minutes a couple breathless residents came in after racing up the stairs. More air in the brain. Not sure from where. Time for a new plan.

The plan, which developed quickly, was to take him back to the OR for a temporary fix to buy some time to get him to the “nuclear option” surgery that could be scheduled for Thursday. This was told to me by the chief resident of neurosurgery, who the first time I met him told me that he was the chief resident of neurosurgery about every other sentence. I think he’d prefer if I called him the Chief Resident of Neurosurgery. “I’m surprised he left you any air to breathe,” said the well-seasoned nurse afterwards.

The Chief Resident of Neurosurgery sat on the edge of Mark’s bed to talk to me. The temporary fix would start with a tracheostomy, to close off the possibility of more air getting into Mark’s brain through his mouth or nose. Then, they planned to remove his tissue graft and place a temporary synthetic graft. They’d go through the nose and if that didn’t work, reopen Mark’s head. The Chief Resident of Neurosurgery looked at me solemnly. Did I have any questions? “You’ll tell me when this is too much, right? I want you to be clear and direct with me.” “I will,” he said. “This is fixable. It’s a difficult spot, and it’s a setback, but it’s fixable. “This is the part where I’ll cry,” I said. “Will Mark be able to return to the quality of life he had before the surgery?” “Mark has no damage to his brain,” he said. “What about the pathology?” I asked. He went into the hallway and returned with a computer cart. He brought up a document. Pathology from the surgery last week. I hadn’t seen it yet. He scrolled through tissue samples. No evidence of disease. No evidence of disease. No evidence of disease. We could keep having this conversation.

The nuclear option would be replacing the graft with a “flap,” a 15 hour surgery in which they’d relocate a piece of muscle with a healthy blood supply from Mark’s body to his head. Surgeons would stitch every little blood vessel from the muscle to blood vessels in Mark’s head.

“What’s the other option?” my friend Hilary said when I told her. “Nothing,” I said. If the existing graft fails, this is the only option.

Back I went to the family waiting room. Which was a scene this time. All was quiet as per social distancing and masks and being the solo support person for our loved ones. Then I spotted a woman talking to someone with the kind of intimacy that showed they were clearly together. They had their feet up, a blanket, and were clearly settled in for a long wait. “Hey!” I called across the room, “Did the two of you get in here together? How did you do that?” “Girl,” the woman said, “it took a lot. Are you here by yourself? Come on over and join us. We all need community right now.” And so, I did. She was there with her daughter. Her son had been shot. This was his third surgery. “It’s my husband’s third surgery, too,” I said. In the trenches, finding anything in common is a comfort. Even this. “Honey, you have no idea how many people I had to talk to to keep my daughter with me.” Then she told me a long and harrowing story that involved family conflicts and police and, obviously, a violent turn. “We need to petition God together. This virus is keeping us apart when we need to be together. Come here,” she said, “take my hand.” Just like that, the boundaries I know to keep because of Covid fell. I did. Her daughter, cell phone scrolling in one hand, grabbed her mom’s foot with the other. “Lord Jesus, be with…” she trailed off. “Mark,” I said. “…Mark and his bride…” She had more names for God and Jesus than I knew. She said basically one thing over and over. The thing the writer Anne Lamott says: Help. Thanks. Wow. This woman, Praying Woman, had her eyes closed and she did not notice as a woman in her mid 30’s walked up to us, eyes red, a handful of bills clutched in her fist. “I don’t mean to interrupt,” said the new woman. Praying Woman opened her eyes. “But you are,” she said sharply. “You can join us in praying, or you can wait.” I recognized in her a woman who has had to fight a lot. Tense, ready, fearless. “I’m sorry,” the New Woman stammered. “I think she has something to give you,” I whispered to Praying Woman, nodding at the money. “What? What are you doing?” Praying Woman said in confusion. New Woman clearly didn’t know if she’d had done the wrong thing. She blurted out, “I’ve been waiting for my husband to get out of surgery and I’ve heard what you are going through, and I wanted to give you something so you and your daughter could maybe get a snack….I have to go because they said I could go see my husband now.” Praying Woman immediately shifted gears. “No, you are going to take a minute and pray with us. We need each other. Come on in here. What’s your husband’s name? Now, what’s going on with him?” New Woman started to sob. “He started having seizures when I was pregnant with our second child. He just had a stroke. He’s 36. They just removed half his brain.” We grabbed her hands. Praying Woman vigorously prayed for this woman and her husband. She accepted the money. She got up and hugged her. I hugged her. She left to go see her husband.

Praying Woman handed me the money and asked me to buy us all Reese’s cups. We ate them together. Praying Woman said, “We should have gotten her phone number. I’m going to get your phone number. I’m going to check on you.” Then they called me. Mark was ready to be seen in the ICU.

Love in the time of Covid. Waiting rooms in the time of Covid. The stress, the agony, the humanity, the beauty. Emptying and filling. Crying and laughing. It’s like a lightning bolt and a rainbow, over and over again.

The surgery went fine. His trach was placed, and they decided that the air could have been getting into his brain through a split they found in his exterior ventricular drain. “Why would it break?” I asked the surgeon. “You know, things break,” he said.

The good news is that they put on pause the plan for the big surgery. They are monitoring Mark to see if any more air gets into his brain. It’s watching and waiting. We are good at that now. We can do this.

Of all the things that Mark has gone through, the trach ranks up there as my least favorite. He lost his voice, and I try to read his lips. He coughs and the sound comes out of his neck instead of his mouth. I watch as a tube gets pushed down his neck to suction out secretions. This morning, speech came and checked to see if he could take food and medicines orally. This was necessary because he pulled his feeding tube out last night after again working his way out of his restraints. The speech therapist gave Mark sips of water and pudding dyed blue, and then asked him to cough. If blue mucous shot out of his trach, then we’d know that he had aspirated. It didn’t. He can eat a soft diet.

The man is still in there, though. He’s still funny. The other day, before this recent surgery, I gave him a cup of coffee and warned him it was hot. “Piddly puffle,” he responded. “Umm, what?” I said, “I’ve never heard that.” “Just trying to keep you on your toes,” he replied.

“Be good,” I said before I left today. “I am good,” he said.

That’s my guy. He’s a handful.