Monday, January 1, 2024

December 23rd, 12:20 am

I need to write about his last hours.

I need to be able to see it, process it, try to make sense of it. 

I mean, it does make sense, except in my heart. 

In my heart, well, nothing makes sense at all.

December 22nd was our 34th anniversary (yeah, we're old). I had planned to not go home that day but to go home on the 23rd because candy cane sleds were on the schedule. And then the 24th for Christmas Eve dinner and a few hours on Christmas. But then I decided that if I could watch the candy cane sleds, that would be enough and I wanted to see William on our anniversary.

And things were looking "okay." I mean, they weren't great, but we were making progress on his nitric, his vent settings, sedatives, etc. We'd gone from three IV "brains" down to one. He was off one sedative and almost off the other. Nitric was minimal and almost off. He'd fevered off and on, but that wasn't anything new.

But something nagged at me. I kept looking at him and looking at the Facebook memories that were coming up. And the thought that I'd had for some time that maybe it was time to pull back on some of the interventions. I really didn't know what that looked like, but the more I thought, the more I knew I didn't want chest compressions if his heart were to stop.  I mean, the chances of it working were slim to none, and if somehow it did, he would be trying to recover through broken ribs, where every single already difficult breath would be compounded by intense pain. But I'm not his only parent, so I needed to talk to William.

At home, I brought it up, and he wasn't sure, which was fine. I mean, I'd been thinking about it for a couple days, but it hadn't crossed his mind yet. However, as we were talking again after dinner, I felt an urgency to get back to Primary's. Before I left, he told me he agreed: that was too much to expect of Aaron.

Now, there's a real, tangible fear among parents of medically fragile kids that doctors might not do everything they would for our kids that they would for a typical kid. I haven't seen that response from our teams, but still, it's there. So I figured that once I got back, I'd find one of the doctors I had a long-standing relationship with and talk with them, except that's not what happened.

The team was rounding just about five minutes after I got back about 9:30 pm. We finished with the plan to pretty much stay the course. He had popped a pretty high fever: 105, but then it came down and was lower than normal. (That did make me worry a bit.) They had restarted norepi (similar to epi) because his blood pressures were a bit lower than they wanted, but overall, the plan was for no changes. And then I found myself speaking up. 

"We need to revisit his code status. I don't want chest compressions. Those are off the table."

There was a sigh, and the gentle comment that she felt that was a very compassionate decision, and I tried not to tear up. I had just given permission for my child's heart to stop, and the team to not try to start it again. 

Shortly after, I told him goodnight and I loved him, and went to bed. 

The nurse woke me at midnight to tell me they were restarting epi as well because his blood pressures were still kinda low. And they were, sorta, kinda, but still within what we see at home pretty often. 

Except epi didn't do anything. 

They went lower.

They called the team who brought in an ultrasound and a quick-acting paralytic. 

I got up and stood at his head, smoothing his hair and talking to him. 

The attending was also now at bedside and they told me they could make room for me by his side, but I didn't want to do anything that would get in their way at all, so I stayed.

When they called for epi-spritzers, the attending told me to come to his side and I did.

I saw the monitor. It wasn't good.

She called for pharmacy and code epi.

I watched his numbers go down farther.

I don't remember what all they were, but I watched his heart rate slow, and slow some more.

50's, 40's...

I asked if we were losing him.

She told me he was going. 

And they pushed more code epi. 

I don't know how much, I know it was several times. It did nothing at all. It was like they were pushing saline.  His heart was done. 

I watched the wave patterns and in my shock or naivete I thought there was something wrong with the way the leads were placed because there wasn't much in the way of peaks and valleys. 

No, it wasn't the leads, it was his heart.

It continued to slow. Her hand was on his wrist and I heard her say she couldn't feel pulses. She put on the stethoscope and listened.

There was nothing.

He was gone. 

I still can't believe it. It seems so surreal. He was still warm, still colored. I was gripping his hand, smoothing his hair, kissing his face. They said he was gone, and I just didn't understand.  I kept waiting for him to move, to come back.

It had been 20 minutes since the nurse woke me. 

It was as if a feather had fallen from the sky, slowly floating to the ground and then was still. 

I was shattered, but he was at peace. His heart stopped; they disconnected the vent. There was no struggle, no pain, no fear. Just peace. For him at least. 

It was the same attending that had been present back in February of 2022 whcn I told her I didn't think that was "it" but if he was going and I didn't see it, she had to tell me. I was right then. And I knew this time, too. When I asked, it was a plea for contradiction to what I felt, not a question I didn't already know the answer to.  

Oh, my baby... 

This hurts.

It hurts so bad.

Tomorrow we bury you, because the cemetery was closed for the holiday weekend. How am I supposed to walk away and leave you there, alone? 

It's 2024, and it's a year that doesn't know you. I don't know how to put you in the ground and leave. Everyone is saying "Happy New Year" and I just want to go back to last year. I know you stayed as long as you could. You are an amazing, valiant warrior and I am so privileged to be your mom. But please forgive me if I wish you were still here. 

I'm glad you're free. There are no more IV's, PICC lines, sedatives. No more sitting on the sideline watching others run and play. But I miss you. 

And I don't quite understand how the world is still moving forward without you here. 

“Memories saturate my heart and the story of you spills from my eyes."
—Grace Andren

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