R’s mom made a video about his heart story. <3
Systematic injustice persists in Ferguson as police arrest protesters and then attempt to use them to coerce protesters.. As @caulkthewagon wrote: “If Ferguson PD is willing to exchange arrestees for crowd movement, then those people haven’t been arrested, they’ve been kidnapped.”
100 more days until Grand Jury deadline.
left: normal heart
right: R’s heart
R’s surgery is on the 9th, so a week and half away. The RenFaire is on the Sunday prior. Immediate family will be at the hospital the day of. From the time we wave bye till the time we see him again will be 8-9 hours. Last night his younger brother was asking good questions, like how do they get to the heart. Seeing an 8 year old fathom a scalpel cutting open his brother’s chest was an intense thing. That discussion led to a declaration that he wants to be at the hospital during the surgery.
If all goes well (I hate that phrase), he’ll be in the hospital for 10 days, and he could be back at school within the month. “His doctor is one of the of the best in the world, and has done this surgery dozens of times,” circulates on autoplay in my head.
My heart is pretty full of emotion, catapulting between OMG he is going to get to lead a normal life and OMG Open Heart Surgery is Fucking Scary. I find myself daydreaming about taking him on long backpacking trips, long walks through Pompei, or to the Tahoe snow, and then gulping back the tension in my esophagus that comes from imagining the day in the Stanford waiting room and the week that tubes will stick out of his body like octopus legs.
So, true to form, and to distract myself, I’m making lists of the things we will need to get us through the hospital stay (sketch books, sakura pens, water bottles, storycubes, etc.) and plotting out the logistics of that time.
- The news from the surgeon yesterday is better than we could have hoped for. There is a surgery available to Riley that was never on the radar, one with less post-surgical risk and that will give him nearly normal oxygen saturation levels and a normal life expectancy. Three weeks ago we were staring down the barrel of having to retry a surgery that resulted in a life-threatening condition that required the surgery to be reversed, and that (if successful) would give him a life expectancy in the 40s range.
- It’s really kind of unfathomable.
- He’s going to get to be a normal kid.