You'll just know

One of the most imperative questions I found myself asking throughout Lennon's journey was, "How will we know when enough is enough?"  Everyone told us that we'd "just know."  I remember the moment that happened for me. 

Wednesday, May 29th, 2019

Dr. Haws woke me up and said, "He's over 150."  I still wanted to fight, but it was at that moment when I really started thinking that we might be at the end of the road.  There was still an out, we were waiting on bloodwork.  Surely he would test positive for some kind of virus, he always did... but there was nothing viral or bacterial to be found.  His body was simply shutting down.  We decided to intubate and I asked dad to bring the family to Wichita. 

Intubation did not go well.  His oxygen saturation rapidly dropped into the 60s on the first attempt.  Dr. Haws has a terrible poker face and her concern was immediately visible.  The second attempt was better, but there was a bunch of tracheal aspirate (fluid that was sitting in his airway) that came up when the breathing tube was placed.  I was giving dad the play-by-play as it happened, and he texted, "Did we make the right decision?"  The wheels were spinning for both of us by this point.

Around 10:00, Dr. Smith came in to do rounds.  He informed me that Lennon's right lung had started to collapse, so using the ventilator would provide support for the lung to open back up.  It would also help get his CO2 level back into the normal range. I called Nikki and my mom. Even though there was talk of going home, it was very conditional.  We knew that our options were all less than desireable:  CPAP 18+ hours per day, ventilator, or back to oxygen and call hospice. 

The rest of the day went fairly well, but that evening seizures like we had never seen started. He was jerking both of his arms up by his face and then his eyes would cross and roll.  Ativan took care of that fairly quickly, but they had to give him both Ativan and Presedex to keep him calm enough to leave the tube alone.  

Thursday, May 30, 2019

In the morning our nurse told me that there had been staph bacteria found in his secretions.  She also let me know that Ativan had to be given at 3:00 and 6:00 to keep him from being agitated.  He was pissed.  He was tired.  He was letting everyone know about it too. After rounds, Chris and I sat down and talked more about going home or not.  The words had finally come out of our mouths.  At first we decided to wait until Saturday to give his lungs time to recover before extubating.  I remember looking at Lennon and then at Chris and asking "What for?"  Why would we go home just to put him through this all again?

The PICC line had taken almost 4 hours and two attempts to set, they had to try twice before getting the breathing tube placed, breathing treatments, percussion vest, being woke up every 2-4 hours for some kind of poke, prod, or shake... how could this be a life worth living?  Nobody could even tell us if going home would be for hours, days, or weeks.  (They weren't even willing to say months at that point.) I felt like a failure and a traitor, but I "just knew" that Lennon's life had become labored.  It was hard work for him to just be present.  

After rounds, Chris was the brave one.  He chose to bear the burden of asking to speak to the doctor about end of life procedures.  Hearing the words out loud stole my breath.  I felt like someone had taken a hammer to my heart, even though we both agreed.

My heart goes out to anyone who has ever had to make this choice.  Lennon's death certificate listed many things, but the worst one for me was "Withdrawal of Care."  That is NOT what happened.

You see, Lennon went out with several long, peaceful hours of snuggles from his siblings, grandma, mom and dad, and of course Nikki.  Nikki and I bathed him, making sure to get his beautiful curls back in place, and then dressed him in his Batman outfit.  His shirt read, "I Got This."  He fought like a soldier.  He was breathing on his own, listening to his favorite music, and getting his big kid version of pass the baby.

A little after 9:00, we sent Dallas, grandma, and the kids back to the hotel.  As Chris walked them downstairs, Lennon's stats began to drop.  By the time he got back to the room, we asked him to pull up a chair.  I was in the bed with Lennon in my arms, dad sat over the rail, and Nikki sat near his feet.  We told him we loved him and how proud we were, and held him as his spirit left his body... Like everyone said, we "just knew" when that moment came too.

There is much more to this story that is too hard to put into words.  It was the most beautiful and devastating thing I have ever experienced. I was barely able to get this down, even after stopping multiple times to care for my leaking face.  It's been over a month and I still feel the weight of him in my arms and the weight of the choice that we made.  I can only hope to honor my little superhero by sharing his story and advocating for others like him.