On Sunday the 6th, we were able to meet with a wonderful family in Torrance whose son had gone through all of this with their son ten years ago.  Their son hadn’t even been aware of the surgery until last year, when his folks found out he and some buddies were planning to shave their heads.  He’s an athlete and a straight-A student, and when we met him, you couldn’t tell there’d ever been anything wrong with him.  That allayed quite a bit of our fears.

His mom and dad did warn us that the recovery from the surgery isn’t easy.  The incision site is ugly, and by the second day the kid’s face was so swollen his eyes wouldn’t open, and started to bleed.  You can’t hold the baby right out of surgery, but you can touch them and pet them and talk to them.  The hardest thing once you get home, they warned us, is keeping their delighted older siblings from harassing them.

Wednesday the 9th had us at the eye-clinic in Oakland.  Sitting in the waiting room, the other mother of an infant and I kept eyeing eachother’s babies.  Finally I asked what they were here for and she said it was a pre-appointment for the cranio-panel on the 10th.  "Really," I asked.  "What’s wrong?"  
"Lamboid," she replied, naming the sutures that were closed on her son.  "You?"
"Saggital and Coronal."  Selena, her son Malik and husband Kevin became buddies in the waiting room and hung out together at the hospital on the 10th as well.
When we finally got into the doctor, he put that freaky solution into Julian’s eyes to dialate the pupils and then peered into them with his lights.  They were looking for pressure on the retinal nerves, which is a good indicator of pressure on the brain.  Nothing.  Julian’s eyes are fine, and there’s no pressure on his baby grey-matter.

Yesterday we had to head to Children’s in Oakland for a 5 hour craniofacial panel.  We met a jaw surgeon, an audiologist, and ear-nose-throat doctor, 2 plastic surgeons, geneticists, orthodontists, speech pathologists, dentists and the neurosurgeon.  Julian came away with 2 diagnoses:

Non-syndromatic pan-synostosis.  In other words, Julian is kind of a fluke...this just happened by chance.  The most common syndrome associated with this much fusion is Carpenter’s Syndrome but that usually also comes with extra or webbed toes, obesity, small babies and mental retardation.  None of these, we were told, is something affecting Julian.

A rhinovirus Infection.  The Ear-Nose-Throat guy detected some fluid in Julian’s right ear, and determined the cause to be...the common cold.

So, he’s perfectly healthy except for the head bump and the sniffles.

Anyway, here’s the breakdown we received after meeting over a dozen doctors:

*They will anesthetize him while he’s still in our arms.
*Then they’ll take him into surgery.
*In the OR they will shave a line from ear to ear (like a headband) for the incision.  The hair will be bagged and given to us post-op since it is his first haircut.  No joke, that is standard procedure.
*Surgery will be 4 hours long, barring complications.  Dr. Sun’s nurse, Sue, will be in the OR and will call and update us every hour, or as developments warrant, whichever is more frequent.
*They’ll be separating the metopic, saggittal and coronal sutures (how will depend on how it looks when they open him up) and smoothing out the bumps in his skull.
*He will then be turfed to the Pediatric ICU, still on a ventilator, and on a lot of morphine.
*He’ll have a big bandage on his head, will be woozy from the pain meds ad won’t be able to eat till the ventilator is gone.
*Once he’s off the vent (a few hours to two days, depending on him), he’ll be able to take breastmilk in a bottle, or possibly even nurse.
*Swelling the second and third day will be awful.
*On day 3, they’ll remove the bandage.
*Once he can open his eyes, he’ll be moved to a regular room for one more night.
*Then they’ll give us an RX for pain drugs and send us home.
*For a week he’ll have to be upright all the time (even sleeping upright in his carseat or swing) to help reduce the swelling.  He’ll be cranky and sore for a while.
*At first glance we were told there was a 25% chance he’d need a second surgery at 9-11 months of age.  Now they’re thinking it’s more like a 50-75% chance.  This is our only bad news.
*He will NOT need a helmet!  They’ll be using plates and screws (they will dissolve over the course of a year) to hold his skull plates in the right place, so the only visible evidence of the surgery will be his scar and the missing hair.

The hospital is VERY strict about visitors in the ICU (Pablo and I can’t both be there at night), so waiting until he comes home to come see him is probably best for the general public.  Rory could use some friends and entertainment that week, and we could use a meal or two as well the first week at home (since we’ll have to be holding him upright all the time).

Anyway, please keep him in your thoughts and prayers.  He’s going to need them.

For more info, feel free to head to his website.