One Week

One week.

One week to get off ECMO. One week for swelling to come down from a nine hour surgery. One week to ventilate. One week to live, and five of those seven already gone.

I want to ask them if more can be done. There has to be something someone can do. We've come this far, they have to have more ideas of what we can try. But I know they're doing all they can do, and it just feels like it won't be enough.

If they cannot ventilate Kilian, he will remain on ECMO. Every day beyond a week greatly increases the risks of something bad happening - brain bleeds, stroke, hemmorage, machine failure. We're playing with fire - our sons quality of life, and life itself.

The other day was grim. They told us they were throwing out hail marys, trying anything they could to help Kilian. There was one more idea they thought they could try, but would never attempt this under any other circumstances. While the repair of his airway is looking ok, where that airway connects to his lung is so narrowed the amount of pressure they'd need on the ventilator would tear his sutures. Their idea was to balloon the airway, in hope of widening the connection enough to ventilate - but same as with the high pressures of the ventilator, they risk the sutures not holding.

A little bit of hope was found after this discussion of a last hail Mary, when they were able to move the vent down a bit more. They bagged him and found they were finally getting air to his lung - but it still wasn't enough.

So many people he has seen in his four weeks of life stopping in with sad faces, no one wanting his story to end, and everyone realizing we are nearing that destination.

They decided on Friday to basically do nothing over the weekend, give him a few days and check again with another bronc on Monday. If we reach Tuesday with no ventilation, one week on ECMO, we will sit down for that final discussion. We will be advised where we are, reiterated the risks in continuing on ECMO, and asked to make a decision.

Of course no one would choose this, but this is exactly what we didn't want. We didn't want to make a choice. How do you decide to let your child go?

All I can think about are his final moments. Will he pass in his bed? Will they allow me to hold him while he goes? Is he going to struggle and try to breath, or will he go peacefully? How long do we sit with him? How am I possibly going to be able to walk out of that hospital, empty handed, after having watched him in his final moments and knowing I will never see him again.

This is so unfair. A list full of diagnoses and he conquered every one of them, except that one that no one knew about. He can't breath. That's it. Everything else is manageable, so why can't he just breath? It seems impossible that there's not something else they can do. It's just breathing, come on surely someone can do something. I just want to scream...MAKE HIM BREATHE.

But no one can, and it makes me not be able to breathe.

I have so many thoughts of what our future looks like with him in it. I imagine what he would look like. I imagine him growing into his personality. I see him and Amelia running around in the yard together. She would be an amazing big sister, and him..the best little brother in the world.

I think of my two miscarriages, and 'death comes in threes' lingers in my brain..unwelcome and impossible to get rid of.

I'm so angry. Why him. Why us. Why me. Why do I not get to have my little boy. Why is my baby being taken from me. I got to hold him once...once. He should be home with us right now, where all I would be doing is holding him.

I feel so much pain for Kevin. I have my little girl, why doesn't he get to have his little boy. All the visions of hunting with him some day, the father to son talks they would have had, wrenching on the vehicles together and teaching him all the things only dads know.

I don't want to live without Kilian. I don't want to be part of this world that took him from me. I don't want to box up all his things. I dont want to put him away. I don't want to do any of this.

It's getting hard to look at pictures of him. I already want to take them down. But I don't want to be that way..I don't want to hide him away. I want to be happy that we had the time we had with him. I want to trust that he was here for a reason, and that his short life served some sort of purpose. But none of that matters in this moment. The only thing I feel is the grief that comes with loosing a child, and let me tell you..there is nothing worse.

You hear it all of the time - your children are supposed to bury you, not the other way around. But here we are. This is our reality. And something we are going to live with for the rest of our lives.

I think of all the things that are going to trigger memories. I think of his birthday, and how every single year we'll feel that void. I think to myself, time makes such a difference. In a few years it won't hurt this bad - but it doesn't matter. Regardless of how much it does or doesn't hurt at some point, he'll still be gone. We will still without him. And I will always feel that piece of me missing.

The only thing we have left is a miracle. We keep telling him, if you have one more trick hiding up your sleeve - the time is now Bub.

I want to continue to say I have kids, plural. I look at Amelia, and she's one of two. Not an only. None of this feels right. None of this feels 'meant to be'. It just feels like pure hell.

I just can't shake it off today. I can't get myself to believe there is any hope left. Can't convince myself that it'll all be ok. Can't get the thoughts of his final moments out of my head. And I still can't believe any of this is happening.

Kilian, I am not ready to say goodbye to you. We have so many things to teach you, so many memories to make, so much time left to be spent with you. This can't be the end.