Pablo has been in this position for over 24 hours. Once in a while he lets Mommy sneak out, and I jump in. Or Nana does. my usual position is to snuggle up behind him, creating a family cocoon. That's where I am now. I can't sleep, so I'm writing. That's what I do.
The nurses were kind enough to move the empty roommate bed where I slept last night next to Pablo's bed. Now we have a giant family bed, like we do at home, and we can be together as Pablo pushes his little lungs to do a job they were never meant to do: oxygenate his blood while one of the lungs is being strangled - nearly filled - by fluid.
Pablo's breathing is labored in the extreme. Laying next to him, he sounds mechanical, like gears grinding on an old car. His heart rate has been north of 150 for 24 hours. His heart has a lot of work to do to keep that system going with a troubled lung. By comparison, my heart rate is at 155-160 when I'm riding my bike at 20 m.p.h. on a flat road. And P's is that high when he's laying in bed. For sure, kids' hearts beat faster than adults, but not that much.
My head is spinning, so I'm not going to attempt to walk you through the medical details. The basics are: there's a massive amount of blood in the wrong places of Pablo's body. He lost an entire unit of blood in a 24 period. The origin of the blood can't be pin pointed, but it comes down to the tumor in the right lung growing massively or dying or eroding a blood vessel. The blood he vomited last night in the ER was the largest volume. Three smaller amounts came up today, the last of which was two hours ago.
Pablo is my best friend in the world. He is my son. He is Jo Ann's son. He is Grady's brother. He is a person who brings light and love to all who've ever met him, or spent time in the same room with him. He has lit our way since Jo Ann and I went to her doc's office and found out we were pregnant. Pablo is...a special kid. I love him so much that I can say without the slightest hesitation, I'd jump in front of a bus RIGHT NOW if it meant he'd be OK. I'd certainly shove his I.V. needle in my arm RIGHT NOW if I knew it'd cure him and kill me. F***. Those are no brainers. And they are great fantasies and nothing else.
The truth is, Pablo is dying.
There are no medical options left. Nothing can be done to better Pablo's condition without either causing further harm or simply putting us back at the same dim crossroads. Pablo's doctors never claim omniscience. When I asked them how much life Pablo may have left, the answers ranged from a couple days to a week. This internal bleeding stuff is irreversible and vicious.
Jo Ann and I have had a palliative care plan for a long time. Today is the day we had to enact it. The plan is simple: we want Pablo at home in his final stage of life. This afternoon, we sat down with Grady and told him the details of Pablo's condition. As a family, we decided to enact the home / hospice plan. It was the hardest thing I've ever been involved in. Yet it was so simple. It was all about heart. Logic was nowhere in the room.
Higher than our hearts is Pablo's: all three of us know Pablo wants to be home. In our bed, where he has slept since birth, where he has a view of his tree house in the back yard. With his dogs Chili and Beans. With his toys. Enveloped in the love of his family. Trust me, we don't even have to ask him.
Tomorrow morning, we will take Pablo home. Dr M and his colleague Dr Marcio and our case worker Patricia Rios arranged hospice care for Pablo. The woman who will lead our hospice is universally loved here at CHLA. We will meet her tomorrow and then she'll meet us at our home.
Two basic medical devices will be delivered to our home: oxygen and an I.V. machine that will drip morphine into Pablo's body. No meters, gauges or electronic gadgetry. Our focus is only on Pablo's comfort. He deserves to be without pain in his final days, no matter how many they may be. Pablo is a child. Children should not know pain. This child has known enough challenge, and has soldiered through it all.
Pablo has never complained. And if he had, who would blame him? Through chemo, surgery, radiation, endless appointments - Pablo has just sailed from all that crap straight on to happiness and smiles and fun.
I leave you with this image intentionally. Please hold up only your fondest, happiest Pablo pictures and memories. He deserves that too.
We ask that you pray for Pablo's comfort and serenity. No more fighting. That's all done. We have to elevate our game to get to where Pablo's at.