Read the book

This morning my daily devotional moved mountains for me. It spoke of the different types of prayer. Centered or right now prayer versus open and selfless prayer. The prayer I was so fixated on during our hospitalization was right now prayer, that held Archer in the center, about me, and what I needed. Day 3 of ECMO, we continued to rejoice in our Lord to bring Archer back to us. His daily CT revealed swelling in his brain, permanently plastering the diagnosis of diffuse brain injury into his medical records. The hours I spent reading about diffuse brain injuries and recovery was becoming too many. If I typed one wrong term in the google search my results consisted of multiple evidence-based research articles that all discussed poor prognosis, excruciating outcomes, and realistic debilitating recoveries. If I was sure to type the word recovery after diffuse brain injury, the results were more exciting, but I knew the difference would be in God’s hands because no test results could give us enough solid evidence to solidify a recovery. Nurse Aaron was scheduled again on Sunday. 12 hours shift entirely dedicated to our son. His ECMO specialist this day was Rashad, the same specialist as the day before.

Sunday's CT was done in the afternoon and was ordered because his pupils were now unequal and both nonreactive. My son’s precious eyes that he shared with me were now empty. Lifeless eyes. We got the news of the swelling of his brain around 6:30pm. Nurse Aaron was on his way out and Nurse Katrina was the oncoming nurse scheduled for the evening and overnight shift. Dr. Shears sat down in their seat, pulled up the CT on the nurse's computer fixed to a rotating axis from the ceiling, and started telling us the news we did not want to hear. Aaron stayed half in and half out of the room to hear the report. Katrina cried in the background behind Dr. Shears as she watched me sob over my son, holding his hands, shoulders shaking, and being consoled by Brandt behind me with his hands on my shoulders. We both shuttered in disbelief. Dr. Shears “his brain is so swollen, and I am sorry, I was hoping for a better outcome, this CT is devastating.” Speechless Brandt and I held on to Archer and continued to pray our right-now-prayer. Longing for our baby to come back to us. Immediately they started therapy for the brain swelling. Mannitol and Sodium solution to decrease the swelling. The sodium would help by pulling water from out of the cells creating a diuresis effect which would hopefully take the swelling down. His head was elevated 30 degrees and kept at midline with his body to help the drainage from his brain. Dr. Shears originally did not think his brain would have been affected by this coding event because Archer’s kidneys continued to put out a lot of urine. His words “usually the kidneys go hand in hand with the brain, if the kidneys are affected so is the brain and vice versa.” Another tiny piece of information that allowed us to hold on to hope. A while after Dr. Shears left his room Brandt and I said our goodbyes to Archer for the evening so we could get some rest. I thanked the nurse for crying with me and sharing our grief. I knew Archer was in expert hands. She felt the love for her patient as many other nurses do. She was touched by him, even though she never got to know his fully-functioning self.

We quickly grabbed some food and Brandt brought me to Barnes N Noble to find a book to read out loud to Archer. I had finished my other book. Archer never cared what the book was about, he just liked hearing me read out loud. My typical books weren’t always appropriate for him to hear so I didn’t read out loud at every request. I badly wish I had. This makes me cry. Thinking of all the books I could have read out loud to him but didn’t. I walked into the book store, attempting to hold it together but failed miserably. Asked the first store associate to find me a Christian faith-based book to read. Not being too familiar with Christian books or Barnes N Noble, I had no idea where to start. The poor girl was obviously uncomfortable as I tried to catch my breath between tears to tell her I needed them to pick out a book for me to read to my son who wasn’t doing well in the hospital. She grabbed her store manager to help me not knowing enough about that section herself. The store manager grabbed a book within 1 minute. He either knew the section well or didn’t want to interact with my uncontrolled emotional self-much longer. The book I purchased is called Praying women by Sheila Walsh. I also purchased a daily devotional to read to him.

A doctor that has impacted Archer’s care from the beginning of this hospital stay was so supportive of all of us. She purchased Archer a pink blanket with a dragon head and a teddy bear after sitting with me in the IR department until Archer was settled in his room on January 7th. She stayed with me. She called family for me. She provided prayer and hope for me. I am so grateful for this doctor. Dr. Kara Anderson from Virginia. She impacted us greatly on the day of Archer’s passing as well. I showed her the book I purchased after she had offered to leave her mother’s bible with me the day before, on her day off, dressed in normal street clothes, because she cared to visit us even when she wasn’t clocked in. She approved of the book because the first critic on the back was from her favorite author. Her name and selfless actions will forever stay with me. I didn’t start reading the book to Archer until the next morning.

That night Brandt and I went through the obvious motions of updating family, continuing to pray together, and reading countless articles about diffuse brain injury recoveries. Every hour I woke up, I called Katrina and she reported the statement of “No changes” each time I called throughout the night. No worsening for Archer, no seizures, and no change in his nonreactive unequal pupils. This no changes report was always taken as good and bad news. It really didn’t provide any comfort we were looking for. We couldn’t stay overnight in the hospital because the covid restrictions were so stringent. Brandt even had to go through a special exception process to come to the room. The rule was 1 parent per hospital stay. This was the rule since Monday, January 3rd at 0001. The night we arrived, there were zero exceptions until Archer’s continued life was left uncertain.

This Sunday I had also asked Nurse Aaron if we could please have our chaplain visit Archer. He asked the supervisor and was reluctant to tell us the answer was no, due to restrictions. Instead, we were offered another chaplain. He came to visit, very nice gentleman. Our room was not set up well for him to visit because he was in a wheelchair. The uncertainty we had for him didn’t compare to his own frustration that he likely felt often trying to get into these tight rooms. We prayed together and he assured us the lord was with Archer. His visit was comforting but I still wanted our chaplain to visit. I called her our chaplain, but really she is truly one off God’s chosen disciples sent to us during the most earth-shattering moments of our lives.

When your child asks you to read the book, read the book, embellish the terms if needed, skip the bad words, and smile while they soak up your undivided attention. When you pray, try changing it to a selfless prayer. Remember Matthew 6. “Our father in heaven, hallowed be your name, your kingdom come, your will be done, on earth as it is in heaven.” This prayer never resonated with me until this morning. This prayer was a common prayer, we all know the words by heart but do we truly know the meaning? I’ll be the first to hold my hand high and confess I’ve been overlooking this prayer since I knew how to pray this prayer. That’s me, taking things for granted. Diving into this prayer tells me, Lord I worship your holy name, your will be done regardless of what right now prayer I pray, because your will be done on earth as it is supposed to be done in heaven. Your plan has been the plan all along Lord and I did not want to accept it. Please forgive us for our right-now prayers that we desperately felt appropriate, but be happy with us that when we were in the deepest wells of sorrow, we looked for you. Brandt and I sought out your help, knowing the help was beyond us, beyond the doctors, beyond the facts and science. We needed your help. Thank you for the plan that you graciously gifted to us. We will continue to believe in the plan and solidify our agenda to match yours. Amen.