I Will Love You Forever

by Cori Salchert

  Oh, but he was.

  That fast. Two minutes tops and he was already gray.

  I flipped him onto his back and tried to suction his trach. The suction machine had gotten too full and hadn’t been emptied. It wasn’t working. His oxygen levels were in the low 80s by that point. The vent alarms were going off obnoxiously, the pulse ox was beeping loudly, signaling trouble. I raced across the room to the Go-bag to grab the portable suction machine and raced back to Charlie’s bedside.

  His saturations were now in the 70s.

  Mary Elisabeth and Andrew came into the family room.

  Andrew began to bounce back and forth on either side of the bed, trying to silence the alarms, but the problem was still there, so the quiet was only momentary. Mary Elisabeth asked what I needed, and I shouted, “Call 911!!”

  She stood there.

  She didn’t want to do it. She didn’t like talking to people. She peppered me with questions: “If Charlie is going to die, then why do I have to call 911 anyway? What am I supposed to tell them? Why do I even need to call? Why are you freaking out, Mom?”

  I did not want to be having a conversation about Charlie’s full code status and my duty. My understanding at the time was that I was his foster mom, not his real mom, and I had to do everything possible to make sure he continued to breathe and have a heart rate.

  In spite of her not completely understanding why, Mary Elisabeth finally made the call and told the dispatcher to send help right away.

  Andrew’s bopping back and forth silencing the alarms to decrease some of the tension was driving me a little crazier. By this time my little boy’s skin was dark gray and his lips purple, and his eyes were rolled back in his head, his body motionless. Needless to say, I was frantic.

  I yelled at Charlie, “What? Do you think you’re going to do this today? Today? I just put the adoption paperwork in the mail, for goodness’ sake! Breathe!”

  Unbeknownst to me, his lungs had filled with secretions when I turned him on his left side. He was drowning in his own fluids.

  For me this was my nightmare of all nightmares, and it was happening right in front of me. It was horrible to watch and not be able to make the difference for him—the difference I had been helpless to make for my sister because I hadn’t been there.

  During those moments, Emily came through the doorway, asking what I wanted her to do. Oddly enough, I told her to clean up the kitchen! The look on her face told me I was nuts, but she did an about-face and walked back in to do as I asked.

  Yeah, you read that correctly, I told my daughter to clean the kitchen.

  When my life is in chaos, I have a tendency to straighten up messes in the house. If I’m able to restore order in some small fashion, I feel better able to deal with the parts I can’t control.

  At that point, Mark, having heard the rushing footfalls and hollering downstairs, came out of our room on the second floor, down the stairs, and burst onto the scene. I cried out feeling panicked, “It’s not working! It’s not working!”

  Charlie’s oxygen saturations had dropped to 30 percent, then nothing, at the same time his heart rate slowly dipped lower and then disappeared also.

  Mark tilted Charlie’s head back to open his airway while I worked to clear the fluid filling his lungs. My worst-case scenario was coming true. I was inadequate for the task, and this baby was going to die as a result.

  Every family member present was praying in some fashion or another. The sirens coming down the street from the paramedics and fire department reached our ears.

  I told Charlie one more time, wailing, “I don’t want them to have to pound on your chest, baby. Please, please, breathe.” I continued breathing efforts with the resuscitation air bag because it was my responsibility.

  Ten minutes had passed since the first alarm had gone off. It was an eternity.

  Suddenly Charlie gasped, then his chest moved and air flowed in.

  I continued to bag him for another minute or two, and then Mark put the ventilator back in place once his oxygen saturation levels and heart rate began registering once more on the pulse oximeter.

  There is no human reason Charlie began to breathe again. I’m fully convinced God was not ready to bring him home.

  The EMS guys began streaming into the house from the front where Andrew had met them and was directing the traffic. A sea of blue uniforms and concerned faces surrounded us. As the men stepped close to the bed to get a good look at Charlie, Mark told them, “You know, guys, he’s fine.”

  I snapped at Mark, clipping my words out tersely so no one could mistake how serious I was. “We are going to the hospital. He. Is. Not. Fine.”

  I was totally rattled and angry that my husband was treating the whole situation so lightly. Granted, it’s his defense mechanism. He wants calm, and he’ll pretend it exists if he needs to. I have been slow to learn that my going to even more extreme measures to help the man understand “it is not fine at all,” are received with equal amounts of resistance.

  The firemen and paramedics looked wary. I’m sure they wondered if they had a code blue on their hands or a domestic violence call. I left and went to the living room.

  Shaken, I called our special needs liaison at Children’s Hospital. Beth answered, and I told her what had just happened.

  She was sympathetic and asked me to describe what Charlie looked like now.

  I left the living room and walked back through the dining and kitchen area to where Charlie lay in the family room. He was breathing via the ventilator. His heart rate was normal for him, but he was unresponsive. He was lying so very still. He didn’t react to the paramedic’s attempts to elicit a pain response.

  I choked on a sob and told Beth, “I’m not sure if he’s brain-dead now. We have to come to Children’s. I can’t watch him myself and make that determination. And if he’s brain-dead, we have a whole different scenario on our hands with this life-support business than we did if he’s brain-damaged.”

  She agreed and told me she would make the phone calls necessary to have the ER ready to receive him when we arrived.

  I pointedly ignored my husband, poor guy, and told the paramedics with a no-nonsense tone, “We are going to the hospital.”

  Rod, the supervisor of the EMS guys, nodded yes and got his men going to prepare for transport. Charlie was put on the cart and gently loaded into the back of the rig. The back doors shut, and the ambulance drove out of Sheboygan toward Milwaukee.

  I looked down at my sweet boy, where he lay not moving. The only indication Charlie was still with us were his vital signs registering on the pulse ox. My thoughts were racing, and I was still attempting to tamp down the panic this child had created in my heart. I had fallen deeply in love with Charlie, so the potential hurt his death could cause was great. I was grieving but also trying not to lose it because it was not about me in that moment but about my child. He was the focus. I would have to find time later to fall apart.

  We traveled mostly in silence. Rod was so gentle and kind in the way he handled Charlie. He gave me sympathetic glances, but this smart man seemed to know better than to ask how I was doing lest my facade of control slip and the dam of emotion break.

  I held Charlie’s right hand in mine, my thumb placed in the middle of his sweet palm with his fingers loosely wrapped around it. There was no clenching tightly of me to him, or him to me, or to life itself. He was unresponsive, and I was trying to hold loosely to his life, and his hand, because as Corrie ten Boom would say, “I must learn to hold earthly things lightly because, if I do not, the Lord might have to pry away my fingers, and that might hurt”1 and “Never be afraid to trust an unknown future to a known God.”2

  We were nearly to the hospital, every possible scenario having passed through my mind, when Charlie spontaneously picked up his head and slowly turned it to the right side so he was facing me. He then extended his right arm toward my face, letting go of my thumb but pressing his hand out toward me. This was his signature way of aski
ng for a kiss. I held his hand in mine and immediately pressed my lips to his sweet palm where my thumb had been.

  I caught myself tearing up and murmured, “Oh buddy, you’re back. You’re back.”

  By the time we got into the ER and he was evaluated, the medical staff asked me, “How does he look to you right now?” Charlie can be scary to the casual observer with the way his eyes don’t focus, but I told them with a rueful laugh, “He looks like a million bucks. But he sure didn’t two hours ago. I know I have to take him home. He can’t live here, but I want you to know it is terrifying to be helpless when he’s drowning in his secretions like that.”

  I turned away so overcome I couldn’t continue. I ducked into the bathroom, gently closing the door, and slid down the wall, quietly sobbing, unable to hold in my emotions any longer. I whispered through the cascade of tears raining down my cheeks, “Dear God, wasn’t it enough to have him be medically fragile, not terminal? And then needing a ventilator? And then I’m responsible for keeping him alive at all costs, and now he could drown right in front of me? I’m not sure I’m able to do this. I thought we had some ground rules? I told You what I wanted, what kind of good I hoped to effect in his life, and the very thing that was horrible about Amie’s death is a reality.” And while gulping air, my chest heaving, I wailed, “And Charlie’s not ever even going to go swimming!”

  My heart was breaking over this cross I had been asked to carry.

  When I finally pulled myself together and emerged from the bathroom, the doctor saw I was back at Charlie’s bedside, and he returned and said compassionately, “I’m not sending you home today. We’re going to see if there is something we can do to figure out why he stops breathing even while being ventilated. Hang in there with me a couple of days.”

  Sunday morning as I sat on the couch across the room from Charlie, I kept my distance. I was afraid of the power this child had to scare me half out of my mind. I wasn’t consciously putting space between us; but physically, in that small room, we couldn’t be any farther apart. The nurse asked me a couple of times if I wanted her to get him settled on my lap. I answered, “We’ll wait a little while. Thanks.”

  She inquired again a few hours later, pressing for a firmer time.

  “Uh, well, the Packers game is on this afternoon. Maybe then,” I said.

  The nurse did not let me get away with putting it off any longer but came in before the game started, and with a matter-of-fact attitude, she said, “Let’s get you set up. I’m going to lunch, and want to have Charlie situated before I do.”

  I sat in the recliner next to my buddy’s bed. She picked him up, placed him in my lap, arranged all the wires and tubing attached to his body, and left us to ourselves.

  I looked down at the precious child lying in my arms and realized again, There is a baby underneath all this equipment. Don’t ever forget that, Salchert.

  I found out that the old idiom “If you fall off a horse, the best thing to do is get back on as soon as possible” was true.

  My fear that Charlie would die was real, and it was also greater than my love as long as he was not close to me. Putting that baby in my arms was the best way God could help me draw close to him again. While I still felt fear, it wasn’t the reigning emotion or driving force anymore. Something greater was at stake, and Charlie was worth every tear I would shed or any fear I would face in caring for him.

  We spent about four days in the hospital. The doctors ordered all kinds of tests to be run on Charlie to determine, if possible, why it was he could stop breathing effectively even while on a ventilator.

  I was able to stay at the Ronald McDonald House.

  One evening I was very thankful there was no one in the kitchen while I was preparing my supper. I was peopled out, just plain tired of interacting, and I wanted to be alone, but I couldn’t eat in my room because that was against the house rules.

  I had finished my meal and was cleaning up when a man came up the stairs and pulled a plate and fork out of the cupboard and drawer. He headed to the main dining area to get the meal some wonderfully benevolent group had prepared.

  I stood by the sink, madly scrubbing the pans I had used, thinking, Hurry up, sister, or he’ll be back and you’ll have to talk to him!

  I was too slow in spite of my best efforts.

  He came back and sat at the counter, his shoulders hunched, his dejected demeanor evoking sympathy on my part even though I was exhausted.

  I asked my usual question of others who stay at Ronald McDonald House: “What’re ya in for?”

  He told me his seventeen-year-old was at a critical point. The doctors had told him if she didn’t respond to treatment in the next day or two, they weren’t sure she would make it.

  Oh, my heart ached for his grief and pain, and I could empathize not just sympathize.

  We were both Christians and quickly discovered our commonality and then could more deeply encourage each other to hang in there. Rehearsing our different histories of the way God was in the business of answering prayers left us both much more optimistic, hopeful, and inspired at the end of the conversation. Exactly what the doctor would have ordered! Ha!

  A couple of days later, while I was getting lunch, I saw him and his daughter. I hugged the man then I hugged his daughter and exclaimed, “My goodness, you’re out of the hospital!”

  “Yes! We got our miracle! She got out on a special pass just to have a lunch together, and then she is going to be discharged soon and come home more permanently.”

  What a fantastic answer to heartfelt prayers. I was so happy for them!

  Our situation received answers to prayer, too, but not so dramatically. Charlie’s test results did not reveal anything helpful.

  During Thursday morning rounds, I stood in the doorway of Charlie’s room and faced the attending physician, a number of resident doctors, his nurse, and the case manager.

  “There’s nothing left to do for him medically, is there?” I questioned.

  Shaking their heads no, shifting back and forth on their feet, all the personnel present obviously badly wanted to tell me something could be fixed and we could go home hopeful and relieved.

  I looked at the attending doctor, who had been especially kind, patient, and understanding of my fears and Charlie’s prognosis, and said, “It’s okay. We do have answers because we know what can’t be fixed now. We’re going to go home. We are going to live like we’re going to be here another hundred years, but we’re also going to live like today is our last day with this baby boy. I am full of hope, just not in any kind of medical procedure. You’ve done all you can do, and we’re grateful. I’m ready to take him home, and we won’t necessarily need to come back. Thank you for everything, honestly, thank you.”

  There was no way to stop Charlie from having the episodes where he couldn’t breathe because his airways collapsed or filled with fluid. We would go home and deal with his day-to-day fragility. My hospice background is a gift. I am able to shift focus from finding a cure to making the very best of a tough, incurable situation. It was awful to hear that he would continue to have trouble until he ultimately died from it, but it was a relief to know we had exhausted our options and weren’t missing some vital piece of information.

  Our palliative care doctor, Dr. Jack, was a godsend during those days I wrestled with the reality that Charlie wasn’t going to be with us on my initial terms. If I didn’t want to deal with the possibility of his drowning, then I would effectively be saying I didn’t want him. This grievous conclusion was not a viable option. Someone had to stay close to this baby when he died, someone who knew him and could be a comfort because of familiarity. I did not want him dying alone or surrounded by strangers. I worked through my options where his care was concerned, and Jack listened carefully and gave tangible solutions when possible. Medications, such as morphine and Ativan, could be prescribed, which help with air hunger and the panic that ensues when Charlie can’t get his breath. The meds would also allow Charlie’s a
irways to relax so breathing interventions might be more effective.

  Charity, Mary Elisabeth, Andrew, and Emily came to the hospital and attended a meeting I had arranged with Dr. Jack especially for them. I knew the events of the Saturday before had left us all more than a little upset. I wasn’t assuming my children understood what had happened since then, so Dr. Jack asked them if they wanted out and would prefer to leave Charlie in the hospital.

  They went around the room and said things like, “No, he can come home. We just don’t get why 911 had to be called, because if he’s going to die, why are we calling them to come? Emmalynn’s death was so calm and peaceful. When mom is freaking out, we feel like freaking out, so she can’t be doing that anymore!” (All of my children there echoed this sentiment.) Their questions were answered fairly satisfactorily; sometimes the answer was “I don’t know.” And while they definitely were given the choice not to invite Charlie home again, none of them opined that he should stay at the hospital.

  They weighed in and told us, “Charlie’s death needs to be clean, not a secret we’re ashamed of. We need to be able to talk about it, how he died, not just when. We need to know he wasn’t suffering because of us. We need to know we were with him, gave him medications at the prescribed dose, and were available to try to clear his airway of whatever was blocking it.”

  Our family also understands that because of a 2002 Wisconsin legal case ruling, Montalvo v. Borkovec, Charlie cannot truly be a hospice patient. The Wisconsin State legislature says, “In the absence of a persistent vegetative state, the right of a parent to withhold life-sustaining treatment from a child does not exist.”3