The post I hoped I'd never have to write

I've spent a lot of time looking for blogs written by parents with "liver kids". I wanted to know how their kids were doing compared to Lincoln, how they did post-transplant, how parents felt about the whole process...I felt it helped me prepare for different paths we might take. Inevitably I'd find blogs with posts written when kids weren't doing well. I'd read through the posts, hoping the kids would get better, and I'd come across that post where the parents explained that there was nothing more the doctors could do. I hoped I'd never have to write that post.

But here I am. There's nothing more the doctors can do. Weekend before last Lincoln's kidneys stopped working and he started holding onto too much fluid. It wasn't a ridiculous amount, something his heart should have been able to handle, but his heart didn't handle it well. His heart rate and blood pressure dropped. He had to be intubated. The doctors all met at their weekly transplant meeting the following Thursday and discussed how now that Lincoln was on a continuous dialysis machine (Continuous Renal Replacement Therapy, or CRRT) his heart function was back to how it was before this episode, but they now realized that it wasn't strong enough to make it through a transplant. It also isn't strong enough to make it through another heart surgery. His doctors tried. They talked about combining heart surgery and liver transplant, kidney transplant, everything they could think of. Things that had never been done, but they were willing to explore in every effort to save Lincoln. They felt every option they thought of was futile, and would at best cause Lincoln to die on the operating table and at worst make him suffer before eventually passing away after a surgery.

John and I were first given the choice to preserve as much liver function as possible or to give him any medication necessary to keep him comfortable. We went with comfort. We were then given the choice whether leave him on the respirator and CRRT or take him off. If we left him on he'd eventually pass from liver failure or, more likely, an infection. Then the doctors would be reacting instead of planning ahead, and his pain would be more difficult to manage.

So tomorrow around 10am Lincoln will be disconnected from the CRRT. They'll disconnect all of his lines, clean him up, then remove the breathing tube. Since his kidneys aren't working he'll start to hold onto fluid, and will pass from respiratory failure, although we don't know how long that will take. We asked the hospital to let us take Lincoln outside, somewhere we can sit with him in the grass (assuming it doesn't storm on us). The hospital has been great and is making that happen. We'll also have our friend and photographer Tracy Doyle with us to hopefully get some photos of our precious little man.

The doctors don't know how long it'll be before Lincoln starts to struggle to breath. They don't actually know how well he'll breath on his own once the tube is removed. The PICU attending doctor thinks Lincoln will make it through pictures and his trip outside, but other than that the day is unclear. They said maybe hours, maybe a day or two. No more than two days. We had hoped Lincoln would be able to wake up and look at us, but we won't know until tomorrow whether that'll be possible while still keeping him comfortable.

Lincoln has a pain management team that will be with him when we go outside to make sure he doesn't suffer. They said that families get distressed watching kids in this situation struggle to breath, but that the families don't believe the kids suffer. He'll be on medication that doesn't let him realize he's having a hard time breathing.

The conversations we've had to have over the past week are surreal. We sit there, me usually with a cup of coffee or water so my hands have something to play with, and talk about things we never fathomed having to discuss. Things like how our son will die, and where we want him buried. Whether we want an autopsy. Whether I want to donate the breast milk we've stored. Usually at some point during these conversations I kind of zone out and think about how I can't believe this is really happening and I'm really having these conversations.

Thank you to everyone who's visited, called or sent messages during this journey. You've helped us so much, and we appreciate it.

We're feeling whatever it is you feel when you go past devastated. And the kind words, thoughts and prayers help keep us afloat.