Frustration

This is such an all-consuming word. Everyone has felt frustrated. It takes hold of you and doesn’t let up. No distractions can touch it. It is there and letting go seems impossible. The first night of Archer’s ECMO we were told he started having seizures. It was confusing whether or not he was considered status epilepticus or the seizures were minimal, inconsistent. I knew that seizures would be a sign of brain damage. They started Keppra twice a day and a midazolam infusion to stop him from having any more seizures. I hated having him on EEG monitoring because it covered his hair. Running my fingers through his hair was my favorite thing to do. He would always twist his hair with his left hand when he was bored and tell me how soft it was. On top of the seizure news, the nurse informed us that his pupils were now equal in size and sluggish to react. Once I heard that I felt a sudden sigh of relief. Seizures are treatable but my baby’s eyes are coming back. Initially, they were equal but nonreactive. Seeing them pry open Archer’s eyes every few hours devastated me. I prayed that he wouldn’t struggle with any discomfort during this, I also prayed that he would be able to open his eyes on his own and look into my eyes. I wanted this so bad.

After 24 hours on ECMO his eyes continued to be equal and reactive. Again, such hope was in a subtle form, but I needed that hope to cling to. The first CT was relatively promising. It told us that there was some level of brain damage, but the extent was unknown at this time. It was an expected CT and EEG findings for a child under sedation. Praise the lord this news was excellent! It solidified so much for us and rooted deep in my soul. Saturday, technically day 2 of ECMO was relatively uneventful. We got the news from the CT and sat with Archer. Nurse Aaron provided a lot of comforts and patiently answered all my questions. During rounds, I was the annoying parent. Typical rounds occur in the hallway, between all the doctors, nurse practitioners, dietitians, neurologists, respiratory therapists, ECMO lead, and cardiologists. The nurse reads all the findings while going through every body system, then the main doctor enters the room to provide a consensus of today’s treatment plan. No need to come into this room for a consensus doc, make room for us in your huddle as I diligently interrupt and probe for more information. They never acted annoyed but rarely were they able to discuss his case without breaking my eye contact.

Archer was kept comfortable and asleep, not feeling any of the pain he would feel if he were awake. The fact that there was a transparent dressing over his heart and lungs was more than a bit disturbing. The surgeon kept telling us he’d likely need a “wash out” meaning he would have to go to the OR for them to remove the dressing protecting his internal organs to take away any clotting blood to ensure adequate ECMO perfusion. He never did need a washout. Archer continued to try to breathe over the vent, another key hope that we anxiously held on to. Every time he attempted to breathe over the vent a small pink triangle would flash on the ventilator. His body doing this let us know that his brain stem was not affected by the diffuse brain injury. Brandt and I continued in unity pleading for him to come back to us in any way he could. We didn’t care what it took, we would adapt our life just like we always have, to have our son home with us. He was our boy, and we could never give up on him.

The frustration of the entire hospital stay, and the coding event have been very difficult to cope with today. We continue to seek the scientific answers and fingers crossed; I think we are getting closer. Lord, I thank you for the most beautiful 5 years with Archer, his spirit touched all of our souls and made us better. The struggles and frustration present during his life were meant for him, I recognize and accept that. His struggles showed everyone around him that life can be tough, but you can still shoot the zombies, sing to yourself while on the toilet, play on the swing set, and ride your bike with a brilliant shining smile. When frustration takes hold of me today and many more days to come, I’ll remember that Archer wasn’t affected by frustration even though the life chosen for him was consumed with devastating struggles. It didn’t bring him down, it only made him stronger, and his strength moved many hearts to seek the Lord. Thank you, Archer. Amen.