Julian's thirty-first week

Good Sassy

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7/11/08 Update

September 9, 2008

Yup, Jules has a new surgery date. Poor little guy just can’t catch a break.

So, yesterday we packed Julian into the bike and headed down to Children’s Hospital. After much badgering, the neurosurgeon’s office decided to allow me to get him scanned before heading into the office, so we parked, locked up, and headed into the Imaging area. It really took me back to last time I was at Children’s for a CT with Jules, when he was only five days old, and I was shaking and crying and clutching him for dear life. I honestly believed he was going to die right there in my arms back in December, or that he was going to be brain damaged.

He didn’t, and wasn’t, obviously. So, this time, I wasn’t as scared. Nervous, sure, especially since I’d had to mention his non-characteristic crankiness (which may have been indicative of brain pressure) in order to get the CT done in the first place, but not totally and completely terrified.. However, I’m batting 1000 when it comes to demanding interventions for the kids and ER visits, so I don’t feel too bad about that.

So, we’re waiting in the scanning-waiting room, talking to a mom whose 2 year old son has something-awful-aonma, a childhood cancer, and reminding ourselves that Jules could be much worse off, and in comes the CT nurse, asking us when the last time was Julian had eaten. “Um, just a few minutes ago.” This, she tells us, could be a problem, since they will need him to lie totally still, and if they can’t get him to sleep, they’d want to knock him out with a general, but couldn’t since he’d eaten.

“Well, at least you kept him up all night. He should fall asleep in a matter of minutes, right?”

Um, what? Seems the person who was supposed to call us and explain all of this nonsense last night forgot to call, so we now had just a few minutes to try to get our very well-rested baby to conk out, or we wouldn’t be able to do the scan for another month. Riiight.

We gave it our best shot. I tanked him up on food while Pablo ran down to the pharmacy and got some infant benadryl. We dosed him, let him finish eating, wrapped him and his ugly doll up in his flamey blankie, and put him down on Pablo’s chest. After ten minutes of soothing singing and rocking, which almost got me crying it was so sweet, our sweetie was asleep and could be plunked down in the giant donut.

:<:<:<:Zaaaaaaap:>:>:>:

The images were sent to neurosurgery, and we crossed to the outpatient building, where we saw Dr. Sun and Sue for the first time since January. Despite the cranio-helmet sitting on the desk, we were told that Jules was in for more surgery, as those little horn spots were actually signs of the inside of his head trying to escape to the outside of his skull. Fun. Dr. Sun said they’re going to have to do another full fledged craniectomy, and they’re going to reshape his forehead a little so he’ll look less like a baby and more like a person. Since this, hopefully, will be our last surgery, this re-shaping will be a bit too big for him now, but would allow him to have an adult face when he grows into it.

Here’s the image:

“Glad we got that scan done!” Yup. I’m glad I forced you to do it, too. Turns out he’s not got cranial pressure, but more teeth coming in. That’s why he’s fussy.

The only reason we’d need a third surgery would be if he healed up too well too fast, or if they have to leave large holes in the rebuild that are too much for Julian to fix by himself. If hat happens, they’d do one more reshape when he was Rory’s age or older, and fill in the holes with a calcium bone paste. So, we’re not out of the woods yet.

Anyway, that’s where we are now.

Oh, yeah, and my GP told me that all my health problems are coming from too much stress. Hee hee hee.

If you’d like to help, we could always use someone to babysit Rory, some casseroles in the weeks before and during his hospital stay or, if you wanted, you could donate here. I feel bad bringing that up, but most of Pablo’s leave is unpaid, the surgeries are each $70,000 (and insurance leaves us a nice chunk of that to pay ourselves), and we’ve got food at the hospital, parking, more tests, etc that we simply can’t pay for, so if you’ve got five bucks, we’d be grateful!

If you want to read his whole story, it’s here.

Oh, and on July 24th on Discovery Health’s PLASTIC SURGERY BEFORE AND AFTER, they’ve got a segment on Cranio!

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