Trigger warning, John 1: 2-11, my trial

"Let perseverance finish its work so that you may be mature and complete, not lacking anything." Thursday morning came so fast. This is day 6 of ECMO. Between minutes of sleeping the night prior, I sat at his bedside. One of the times I sat there Archer was struggling to breathe over his vent. His body was fighting the ventilator so hard that his own respirations shook the entire bed. I had my head cradled in my arms resting on the bed and it shook. Approximately 45 times a minute because that’s how quick his respirations were. The weaning of the sedation hadn’t worked. It proved to be more of a struggle for him. The propofol went back on and the fentanyl was increased. This decreased his attempt to breathe over the vent and ultimately provided him comfort. It wasn’t my Archer trying to breathe over the vent. It was the minuscule part of his brain stem that didn’t get damaged causing his nervous system to breathe over the vent. It was just physiology, just his diaphragm trying to do what it was meant to do.

Wednesday night, the night before Archer’s passing, Brandt and I started packing up some of Archer’s belongings that had come to this room from the previous room on the pediatrics floor. I gently touched all the toys and hugged them tightly. Knowing these toys would no longer bring Archer joy, but also knowing these cherished toys were some of the last things he had enjoyed playing with. My shaking hands silently packed up his things through tears in my eyes. I folded the blankets given to us by Ronald Mcdonald House on January 3rd because we had come with so few things not having adequate time to pack and anticipating a short stay of IV antibiotics. A blue fleece train blanket and a blue stitched train quilt. I consolidated the many bags of miscellaneous items. I opened a folded red construction paper that Archer had written his name on and traced his hand on the previous week. The green marker still remained on his left hand and shocked a few of the nurses until they heard what it was. I put this paper in my laptop. Knowing I couldn’t take the risk of it getting wrecked.

One of the things I was missing was Archer’s soft camouflage pants stuffed into a ziplock bag that I had thrown away the day prior. I threw this away out of feelings of disgust. My son’s pants that he loved and had worn into his last procedure, the procedure that started this nightmare. I had thrown them away. I recall the moment so clearly that I tossed them into the trash can. When arriving in the CVICU in a panic, I placed them on a shelf under the bedside table. This bedside table was used by the ECMO specialist for the entire stay. It held the computer used to document on Archer. That’s how small the room was. I threw them in the trash can nearest the sink. Brandt had told me after I threw them away that I would later want them. I denied this. I didn’t want the pants that my son had suffered such a tragic event in. Those are gone to me. Everything about them brings nothing but suffering, get them out of here. There they sat in the trash can. The trash is emptied every single day except for today. I desperately reached in the trash can to remove the pants. My reasoning for throwing them is just as clear as my reason for recovering them. They are pants he loved so much he wanted to wear them the night before, throw them, they are pants he loved so much, recover them. Makes sense right? Not at all. The pants came home and are now in Archer’s dresser. Gone is the blood and any other stain or scent that was present with him that day in the interventional radiology room. I have the pants, cleaned, and cherished. Washed and folded as if he is going to come home to look for his soft camouflage pants. I wish buddy.

This Thursday morning, I woke up, eagerly trying to recall every tiny detail of my dream and Archer’s arms around my neck. I didn’t want him to go for another CT because of the chaos that happens every time he goes. Maybe it wasn’t the chaos that made me want him to stay, maybe it was the separation of each other for the 45 minutes that it took. The team wanted to do another CT to assess the swelling and herniation. While Archer was gone from the unit, they started preparing a larger room for Archer. A corner room had just emptied because a patient was discharged. Discharged from the cardiovascular intensive care unit (CVICU). We had once been discharged from this unit. I knew we weren’t going to be discharged this time around.

The compass team that provided palliative care for patients was present with us when he heard the results of his most recent CT. The entire team came, nurse practitioner on the floor, cardiologist, neurologist, his resident, two doctors from the compass team, our cherished Dr. Kara, his nurse assigned to him, his ECMO specialist, and the chaplain. Everyone fit into this new room on the corner. When they arrived, I was sitting next to Archer, holding his hand and reading The Velveteen Rabbit. This book is about a toy rabbit coming to life because his owner, a young boy, loved him so much. Archer loved rabbits. We have three of them as pets to prove it. I finished the page and gently laid down Archer’s hand, sat next to Brandt, and braced myself for the news. The CT revealed the swelling has come down. The excitement started taking over me. However, the excitement was quickly crushed. The decreased swelling revealed how damaged his brain truly was. We shouldn’t have been in such shock. The doctors all along have been telling us the hard facts claiming to be as transparent as possible. That still didn’t prepare us for this news. Archer’s damaged brain would prevent him from ever living a promising life. He wouldn’t ever talk to us again, his eyes wouldn’t ever have purposeful movement to seek eye contact, he would never taste his favorite food, or be able to do anything he had once enjoyed. He would be on the severely disabled cerebral palsy spectrum according to the neurologist. It would be so severe that he would need gtube for nutrition, trach and ventilator for breathing, central line for his PH treatment, wheelchair, braces, baclofen pump for muscle spasms and so much more would be a guarantee. All these life-sustaining measures are on top of his severe pulmonary hypertension. He would need multiple surgeries and more procedures in the future to decrease contractures of his muscles, to replace a gtube, to place a trach and then more procedures to manage his pulmonary hypertension. This was all IF he tolerating coming off the ECMO and ventilator. I thought, “stop this now, just stop talking to me.” These measures that were all clear to me days before and manageable were now daunting, intimidating and so incredibly scary.

We asked the compass team to meet with us after this news of his CT was discussed. I asked the chaplain to please stay with him and finish reading Velveteen rabbit. I had left her with at least ¾ of the book to finish reading because we had just started it. She was reading the last page of the book when we returned. They brought us to the same conference room we had sat in to tell our children the night before that Archer would be going to heaven. I clutched a box of Kleenexes, curled my legs under me in the corner, and tried to be as small in that chair as I could possibly be. Brandt sat to my right. The compass team led with what we had discussed the night before. Some of the statements that stood out to them were, “how can we tell people we gave up on our son,” “I don’t want him to not be able to look me in the eyes,” “How can he survive coming off the ecmo if everything is grotesquely damaged?” Wednesday was supposed to be a day of trying to wake him up that ended with him not tolerating the weaning of sedation one bit. Brandt and I continued to plead with them. We don’t want to make this decision! You can’t ask us to make this decision! Conflicting, we don’t want him to live a life that was terribly uncertain, yet we don’t want to let him go. Lord, what are we supposed to do? Like a hurricane, a statement came over me. I hadn’t ever thought this before, nor felt it. These weren’t my words coming out of my mouth, but they were coming out beyond my control. Brandt remained silent, likely hoping I would lead the way, but I badly didn’t want to be the one talking. This statement was “I am so scared for Archer to come off the ECMO and vent, then be riddled with therapy, surgeries, hospitalizations, and so many more appointments because I would have to be with him for every one of those events. This would no longer be the journey of our entire family. It would be Katie’s and Archer’s journey. I would dedicate every ounce of my being to ensure he had the best care. I would travel with him as far as I had to, to get the appropriate treatment. I would spend every waking moment obsessing over my son because I knew the line between life on earth and life in eternity was tragically very thin for him. I wouldn’t be there for my other kids or my husband. I would give up everything to be there for Archer. I miss my kids so much; I just want to go home to them.” Dr. Thorkelson responded, “Katie, all I can say was that was a very profound statement.” Then it was as if a light switch went off and the Lord was calling us to let Archer go home to him. No more suffering in the hospital room, no more IVs, no more ECMO cannulas, no more catheter, no more NG tube, no more ET tube, nothing. Just let him go home to our heavenly Father, so we could go home to our family. The compass team was so convincing when they told us that we weren’t giving up on Archer. That didn’t help the situation. I didn’t believe it. Even Dr. Shears told us multiple occasions prior that his recommendation was to withdraw the life support. That didn’t settle with us either.

Once this decision that we dreaded to make was made, it was like a rapid response to everyone taking their place in the process. I assume this was flawless because they had done it so many times before. Everything happened so fast. Child life retrieved a hat for Archer because I didn’t want our last pictures of him to show his EEG leads on his head. The hat is a love your melon pink stocking hat. Perfect for him. One of our questions for the doctor was what if he doesn’t pass away for hours? The doctor was certain that this could take a while because Archer was trying to breathe over the vent so often. Another concern of mine was what if he is in pain? They assured me they would increase his fentanyl so he wouldn’t feel anything. It was like they had an answer to all my questions. Again, because they’ve done this more often than they liked to admit. Brandt and I prepared to sit for hours, watching Archer’s favorite movie with him in our arms dreading the moment he would take his last breath. We had the movie Rampage ready on the tv, had plenty of tissues and water near, and two recliners for us to sit and hold our son for the last time. The team came in to deccanulate his ecmo while we had to visit with the coroner. I told the coroner, just tell me where to sign now so I don’t have to do this after. I signed everything, but somehow she missed a spot and had to come back.

We sat in the room and waited for them to finish with our son. While we waited, we prayed with our favorite doctor and the chaplain. We visited with Archer’s cardiologist as he expressed his condolences. This is when I found out about the dash poem that was read at Archer’s celebration of life. The favorite doctor had a tattoo in white ink of significant dates that were most important to her. Then she read us the dash poem and it felt like it was written for that moment in time. Once Archer was decannulated from the ECMO (shortening the tubes at this point and clamping them off), his ventilator ET tube was removed, catheter gone, chest tubes no longer present, feeding tube discontinued and IVs removed, they wrapped Archer in his blankets given to us from Ronald Mcdonald and placed him in my arms. My lifeless son was finally in my arms. I hadn’t held him for 6 days. I couldn’t hug him close to me and cradle his head for 6 days and there we were, finally together again. Brandt and I sat; we had the team take a few pictures. I struggled to get my mask off realizing I suddenly couldn’t breathe because of the restriction. At that time, what we thought would take hours, took only minutes. Archer was breathing on his own, but it was such labored breathing. It lasted 2 minutes. Archer’s favorite number, 2. He took his last breath at 1:50pm after he was placed in my arms at 1:48pm. Both Brandt and I had an opportunity to hold him just as we did when he was firstborn. We both held our son like when we had we he entered this world and we both held our son when his earthly body left this world. You can imagine just how hard this was, but I pray you never have to experience this suffering. His body was no longer filled with him. His soul was gone. He didn’t look the same. Everything about him was different. We haven’t shared these last pictures with many people, to my knowledge, my mom is the only one who has seen them. I haven’t asked Brandt lately if he has shown anyone. Our last pictures with Archer aren’t necessarily cherished by me. I don’t care to remember him like that because I truly don’t feel he was there with us at that time.

The nurse and our favorite doctor helped us pack everything up as Archer’s body was laid on his hospital bed and covered by a white sheet. Just like you see in movies. Even though we were leaving our son for the very last time, I couldn’t get out of there fast enough. It was like everything was in slow motion now. It was done. Everything we didn’t want to do we had done. Now please get me out of this hospital. I don’t ever want to walk those hallways again. The devastating doors of Mary Brigh 5B shall never see my face again. Please, never again.

Ironically, knowing today I was going to write about our very last day there, I watched a Facebook live video from another grieving mother, an inspirational speaker, who discussed suffering in grace. Then, I proceeded to read my daily devotional that explained the significance of God’s plan for us. During times of severe and disturbing events, we question, where is God? Why isn’t he answering the prayers? Why would he make an innocent child go through such horrific events? What did I do wrong to deserve this? Concluding my morning reading it describes the adversity that we go through are the pieces of the plan that our holy father has laid out for us. The plan containing this tragic event that I don’t want to accept is a piece of the bigger picture for our family. I don’t know what the bigger picture is, but ultimately, I can tell you that this suffering we have been going through is turning into suffering with grace. Accepting the path I’ve been led down, kicking and screaming, but reluctantly I had to take this path because the path had been laid before I was born. The path for my life was never mine to decide. Most of us would like to think it’s our path to decide, but not one of us reading this would ever think losing my son after only 5 years was the path that I decided on. Absolutely not. The path was there from the start. The path was created the moment Archer was placed in my womb. Even prior to that, the path started for both Brandt and me when we committed to one another. This journey of Archer’s life was created for us by the lord knowing that our ultimate path in life wouldn’t be attainable without this suffering. It almost feels powerful, like I know there is a greater good for the end of Archer’s life, but what is the greater good? Even though this journal is based on Archer’s last day on this earth, I think I’ll still find something to write about.

Now as I am wrapping this up, my pandora on in the background plays a song I used at Archer’s celebration, Thy Will by Hilary scott. How is my broken heart a part of this plan? I’m trying to make sense of all your promises, sometimes I need to stop and remember you are God, thy will be done. I know you hear me; I know you see me, Lord, your plans are for me, goodness you have in store. I am letting your plan, guide me, and willingly accepting the perseverance and difficulties that come with the plan. Trusting in the plan. Thank you for sharing this journey with me. It was helped tremendously to release these memories and experiences.