Oh y’all. Tomorrow you’ll get my reflection on the surgery-to-be, today you get the nitty gritty. I’d like to issue a warning here, before you get going too far. If medical procedures make you weak-kneed, skip to the bottom to the header “how you can help” and spare yourself the queasiness.
Back in 2009, when Luke was first in the NICU, we found out he had an encephalocele. Don’t go Googling that word. The photos you’ll see will FREAK YOU OUT. It is with a massively grateful heart I tell you that Luke’s encephalocele is mild and not nearly as horrible as Wikipedia will show you. Unless you go feeling around on his head, most folks don’t even there’s something amiss.
I do. But 99.9% of America doesn’t.
We knew in 2009 if the hole didn’t close on its own, we would have to surgically close it for him. And by “we” I mean two rockstar surgeons, Dr. C (craniofacial) and Dr. G (neurosurgery). We were hoping beyond hope that his skull would thicken enough that we could use that bone to close the hole. In layman-speak, they would cut a hole in his skull, “split” the bone, place the piece back that they cut and use the other half to fill the hole.
I know, it sounds super fun, doesn’t it?
Well, that easy route didn’t happen. Luke’s skull is too thin to use, so we have to seek elsewhere in his body for usable bone. The hips are too thin and unviable because he’s still growing. That leaves the ribs. Not ideal, but not bad, either. Dr. C thinks we’ll need to harvest two, maybe three, to use. He’ll affix a dissolvable plate in the hole and then affix the rib bones to the plate. A bit of “carpentry work” as they call it.
Sorry I can’t help with the Randy Quaid Christmas Vacation jokes. No titanium plates here.
Before they can affix the plate and bones, though, they have to clean the dura (the matter that protects the brain, see image below) and shave some of that protuding bone down. In case you’re wondering, Luke’s hole is about an 1.5 inches high by 5 inches wide. Surgery will take about 5-6 hours and Luke will be on his belly for the entirety of the procedure.
Aaaaaand, this is where it gets tricky.
Remember that blood allergy Luke has to cephalosporin-based drugs? You know, the ones they give every post-op patient to reduce infections?
Remember that super sensitive gut that’s had three surgeries? How anesthesia slows it all down and how it blew up like a balloon during the last major surgery?
Remember how his pain spirals out of control, like roller coaster fast?
With every diagnosis, specialist, hospital stay, setback, step forward and developmental milestone, we have had an Army with us. I know the same will be true this week. I’ll be the one in the corner whispering to myself, Jesus, I trust in you.
Okay, enough medical lingo…
HOW YOU CAN HELP
Pray. I know some of you are prayer warriors and some of you are just really good at bringing me Starbucks. However you connect to the Big Man, I want you to know one very important thing: I feel them all. In the moments when Scott and I are at our weakest, when the PICU is at its darkest, your thoughts and prayers are what carry us through. Basically, it’s no small order when I ask for your prayers. I’m counting on them.
Text, DM or Email. Calling us on our cells is tricky. We usually have them on silent because of the nature of the PICU and we’re often speaking to a specialist or nurse. By texting, leaving us a private or direct message on Twitter or Facebook or emailing, we can communicate back to you when it’s convenient. But please know if we don’t get back to you, it’s not because we haven’t seen your message. It’s just because hospital life is like the third ring of hell.
Meals. We do need to eat. At some point. My sweet friend, Bea, set up a meal calendar. So, check my personal FB page if food’s your gig.
Kids. Fortunately, my parents are on point all week with the bigs. They are 100% taken care of and for that I am eternally grateful. Scott is taking the big three to week-long camp this weekend and will bring Clare back next week. I’m not sure if having her at home after Luke is discharged will be the best avenue, but we’ll cross that bridge when we get there.
Already, I am humbled by your sweet messages, calls and texts. With every step in the Luke journey I am in awe of how awesome you people are. Really. Go get yourself some rest and we’ll chat tomorrow.