Visitation & Service

Lincoln Lancaster Spurrier

Age: 0

Born: September 16, 2013

Died: May 14, 2014

Obituary

Lincoln Lancaster Spurrier.         

Born Sept. 16, 2013; passed away May 14, 2014. He is survived by his parents, John Lancaster and Melanie Kathryn Spurrier. Lincoln was a courageous angel who got his wings too early. He is loved and missed, and touched more lives than he ever knew. His smile lit up a room and will continue to shine from heaven. Visitation will be held on Mon., May 19, 2014 from 9:00 am to 12:00 pm with service immediately following at the Gwen Mooney Funeral Home of Spring Grove Cemetery.

Our Angel

Wednesday, May 14th was the day our angel got his wings.

John and I both stayed at the hospital the night before, and slept in until 8am or so. I used to get up earlier so I could have my teeth brushed and be ready to participate in daily rounds, but I hadn't participated in a few days. There didn't seem to be much point, so we just got the summary from the nurse. There wasn't anything new.

The nurse disconnected the CRRT a little after 10 am. They removed one of two PICC lines, then John and I gave Lincoln a bath. Then the ventilator was removed. Lincoln was on high flow oxygen for a few minutes to make sure he was stable enough to go outside, then on a lower flow nasal canula. About 20 minutes after the ventilator was removed we headed outside.

John and I got to take our baby outdoors. Last time we were home it was February and cold, so it had been awhile since we'd been able to. John got to put Lincoln's feet in the grass, and we think Lincoln liked it. He was sedated, but his feet curled around the blades of grass and he didn't pull away. John walked him around, letting him touch leaves and rocks, and showing him just a tiny bit of what we had wanted to show him in a lifetime. I'm unbelievably grateful that we were able to get some beautiful photos of our family.

Being outside with Lincoln was bittersweet. It was wonderful to be with him with no tubes or lines. But in order to keep him comfortable he was pretty sedated, and was clearly sicker than he had been two weeks prior.

We spent the rest of the afternoon in Lincoln's hospital room. Lincoln and I took a nap together and I think it was the most peaceful rest I'd had in a long while. All three of us laid in bed for awhile, then just Lincoln and I again. We watched TV, something we hadn't done in weeks. It was wonderful to just lay next to my baby, with my arm around him and giving him kisses.

John switched places with me and got into bed with Lincoln while I went down to the cafeteria to get some dinner. About 5 minutes after I got back, with his mommy and daddy holding him and rubbing his head, he took his last breaths. We think he was comfortable, and we don't think he realized what was happening. We knew before the doctor came in to check that Lincoln was gone.

We stayed in the room with Lincoln until the nurse came to prepare to take him away, which took about an hour and 20 minutes. During that hour and 20 minutes the nurses and John packed up the room. I wasn't able to do much but sit in bed with Lincoln. I wished we had packed earlier. I spent most of the hour and 20 minutes just staring at Lincoln, wishing it wasn't the last time. I know I'll see him at the funeral home, but I'm afraid by then his skin color will be different. I'm afraid he'll be pale, not his usual "liver kid" bronze, and I'll hardly recognize him. I stared at him, smelling his head, kissing his fingers and cheeks, hoping I could somehow stamp the feel of him into my mind. The nurse removed his second PICC and helped me get him into his pajamas. Blue striped with a little lion on them.

I'd wondered how it would feel to leave the hospital for the last time. The chaplain took us out the back way so we didn't have to pass anyone in the waiting room, but otherwise we left like we would have left any other day. Walking through the lobby I'd walked through so many times on my way to my peanut was heartbreaking. Luckily we have some great friends who came took our things to our house, and who met us at the house so we didn't have to be alone.

We miss Lincoln so much already, and I know that will never go away. He made us better people. He was the best baby anyone could ask for. Taking care of him was never a burden, not for a minute. I am honored to be his mom and I know John is honored to be his dad.

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.