The End

Roscoe's story has come to an end. We began the day saying hello to our smiling boy and ended the day with him dying in our arms. He never made it to heart surgery. If you are shocked reading all of this, then you might understand how we felt as everything unfolded.

NOTE: Please do not call or text Alisha, since it will disrupt her ability to grieve.

During the first part of the day, Roscoe was sleepy and then VERY awake. He was so awake that when the nurse drugged him with "enough sedatives to put everyone in the room to sleep", he was still alert and smiling. It was almost as if he smiled back at her to say "What else you got?" (although I've never known him to speak with poor grammar). Here's how he looked after 2 rounds of sedatives:

They were trying to put him to sleep to replace one of his IVs. Since he didn't get sleepy, they decided to insert the IV while he was awake (but on painkillers). I held his pacifier in his mouth while they did it. He winced a little, but was mostly cheery. Here he is showing off his "hulk hands", which were really warmers to make the veins in his hands easier to locate:

Later I got to rub my finger around in his mouth to feel his budding tooth and gums:

As I came back to his bedside and started consoling him after the IV was in, I noticed some blood leaking from the remaining PICC line in his right arm. I told the nurse and she immediately grabbed another nurse to check it. The line was broken and would need to be replaced. They gave Roscoe more sedatives (after which he finally started sleeping), so Alisha and I went to walk to nearby Buena Vista Park while they replaced the PICC line.

We came back about 1.5 hours later and they were still finishing up. Roscoe's heart rate was fluttering up and down (bradycardia), but they didn't seem concerned so we went to sit in the courtyard for 30 minutes before returning. When we returned his heart rate was still fluttering and there were more people in his room. Roscoe was still sedated, laying there relatively still. The nurse noticed that one of his pupils was dilated and another wasn't. His pupils also didn't respond to light and his right arm was clenched very tightly. They immediately took him downstairs for a CT scan to check for brain issues. I went downstairs with them.

After the scan, the doctor came out of the room, pulled me aside and said that Roscoe had a very large hemorrhage that was creating pressure on his brain and causing him to have seizures. If I recall correctly, he used the words "catastrophic", "horrible", and "disastrous" to describe it. We don't know how long this had been happening, but it may have been the cause of some of his headaches and agitated behavior in recent days. This was a complete shock to Alisha and I, since Roscoe hadn't had a brain scan in a while and his brain had always looked fine. They consulted with neurology to see if surgery was even possible.

Fluid (lighter on left) putting pressure on his brain (darker on right) 

Possible origin of the fluid, a hematoma (lighter, lower left)

Neurology said that in an otherwise healthy adult the fatality rate for a brain injury like Roscoe's was 80%, not even considering that Roscoe was an infant or that he had a serious cardiac defect and malformed lungs. Surgery would not be an option. Additionally, Roscoe's brain was actively bleeding and so they didn't know how long he would survive. They kept him sedated so he wouldn't feel pain. Alisha and I prepared to let him pass. We were partially ready for it to happen on Thursday during surgery, but not today.

They moved a couch into the room and Alisha and I spent about 3 hours with Roscoe. All of his IVs were removed except for the PICC line, so he could receive comfort sedation. It was great to sit with him in the room with no beeping or sensors for the first time in his life. His eyes stayed closed and his limbs limp due to the sedation. We prayed with him, sung to him, told him how much we loved him and that he'd have to learn from God about us. We kissed him all over, swapped back and forth holding him, and I even got my first hug with his arms around my neck (Alisha held them there). We told him what a good boy he was and how proud we were of him. We caressed his hands, feet, nose, cheeks, and head. For the first time we even let him suck on our fingers instead of a pacifier. We even told him how God had used him to impact people all over the world, all of whom were his friends and who loved him.

When we both felt ready to say goodbye, we had them disconnect the ventilator at around 2:10am. It was hard to make the decision of when enough is enough. I stood up and held Roscoe tight as I rocked him to sleep, just as I had many times before. I knew this would be the last time, but it was still sweet to hold him once again. I glanced up at the wall and saw the picture below, which exactly mirrored the pose that I was now holding him in:

With Roscoe positioned against my chest and no breathing tubes attached, we rocked and rocked. I hummed the song "Amazing Grace" to him just liked I'd hummed it each night when I put him to sleep. I told him over and over again how much I loved him, his momma loved him (she was sitting next to me), and God loved him. Roscoe survived for 40 peaceful minutes with no breathing tube and finally passed at 2:50am on the morning of July 23rd.

Alisha and I both remarked that if Roscoe had to leave us and be with God, we couldn't think of a better way for it to end. He had a wonderful day of playing, followed by restful sleep. There was no stressful wondering or gradual decline for Alisha and I to suffer through. We got to say goodbye in all the ways we could think of, which is a luxury that not many parents have when they lose a child.

I will post a few more blog entries in the coming days after this one. Some are blog posts that I had queued up in advance of surgery. I will also post our last family portrait, which as luck would have it was taken on Sunday by the nurse who had him tonight. Roscoe was a wonderful boy who lit up the world with prayers. We will miss him, but we know we will see him again. We gazed into Roscoe's face and were dazzled by his smile, so I can't imagine what his smile must look like being delighted face to face by God himself.

We love you, Roscoe.