Surgery Explained

The CT went as well as we expected this week.  Unfortunately a four month old doesn't understand not to move for 30-45 seconds, especially on an empty stomach since you can't feed them for 4 hours prior to the scan and in a strange machine with sandbags scrunching her head.  Julia tolerated the first one but we just couldn't get the second (last) one so she had to be sedated. They use a product called Brevital that only lasts about 10 minutes but it's getting the IV in in the first place that's the tough part.  Little baby veins are pretty tough to find, the rubber band tourniquet is not all that fun and holding still for a poke twice because they couldn't get the first one to work is doubly triply not fun.  But we all survived and hopefully she won't need another one for a few years when we can teach her the 'FREEZE' game.

We won't discuss the images themselves about a month and a half so we're going to pretty much try to forget all of this for a while.  The cranio facial doctor is reviewing them now but we don't have a meeting with him until surgery day so won't know what he thinks and we'll meet with the neurosurgeon for the first time April 5th.

As promised, here's some images I think will help explain a bit more what Julia will have done.  The two procedures she'll have done are CVR, which stands for Cranio Vault Reconstruction, and FOA, Front Orbital Advancement.  The CVR looks like this where they cut a slit from one ear over the top of the head to the other ear and then take off the front half of the skull, cut along the metopic ridge (the one right down the front of the forehead).  They take these two pieces and rotate them and piece them back together to smooth out the ridge and adjust for future growth.  Then they'll sew her back up and because they use a zip zag cut hopefully when her hair grows back you'll hardly be able to see it except for a little bit above her ears.  No rocking the shaved head look for Miss Julia but I think that's a small price to pay for a nice smooth forehead.

FOA is a little harder to explain but in a nutshell they are going to cut the entire bone underlying her eyebrows.  Julia has the one on the left below so her forehead is pointy, they'll make several cuts and flatten things out on top while building up the sides a bit.  It is both for cosmetic reasons and to protect her eyes (which is what a brow bone is for ultimately).  This is the one they will probably over correct because they can't really get the bone to grow at the same rate as a typical child so they give it a head start that she'll grow into.  These two surgeries are done at the same time and hopefully only once if all goes well. 

 

So that's it, easy peasy right?  If all goes perfectly she'll be in the pediatric ICU for 2-3 days and then a regular hospital room for another 2-3 days and we'll be home by the weekend.  Then she'll have to go in for a follow up check a week later and then just recover at home to let the plates get good and solid and the incision site to heal. She'll be checked annually by the cranio facial surgeon and there is always the possibility she'll need some touch up work or, heaven forbid, a whole new round of surgery, but the chances of that are pretty slim I'm told.  Cranio synostosis affects roughly 1 in 2,000 kids and touch up surgery needs to be redone in about 10% of cases with a full new surgery in about 1-2% of cases.  We're hopeful this will just be a distant memory in a few years.  Thanks for your love and support!  As always, if you have any questions, let me know.

Surgery Scheduled

Thought I'd send out an update on progress we've made over the last few weeks.  Things are getting scheduled and happening sooner than we thought.  We're excited to move forward though obviously scared as well.  If you remember my checklist from last month, progress looks like this:

1) Select a cranio-facial specialist...check!  Dr. Jensen at Children's is our cranio-facial surgeon
2) Select and meet with a neurosugeon...selected Dr. Lew as neurosurgeon and will meet with him April 5th
3) Get a CT scan in March...rescheduled for February 12th (that's this Tuesday!)
4) Review CT scan with cranio doctor...Dr. Jensen doesn't schedule another pre-op apt but will review the scans and meet with us the morning of her surgery, we'll review CT scan with neurosurgeon on April 5th.
5) Assuming all goes as it should and she grows as expected, surgery sometime between March and June (with possibly one more depending on the surgical approach and how she grows in the next few years)...and the BIG one...surgery scheduled for April 15th!!!

So that means assuming nothing changes, in less than 10 weeks Julia will be having surgery.  She has to be healthy at her pre-op apt and hold off on her 6 month vaccinations until after the surgery.  Other than that, all systems seem to be go.

Specific things to pray for in the upcoming weeks:
1) The CT scan goes well ~ they will probably need to sedate her so we can't feed her that morning but we can hope that she decides to hold still on her own by some miracle.  Otherwise just prayers that she tolerates it well and is back to her regular happy self shortly after the procedure.
2) The scan doesn't find anything unexpected.  We're hoping for a few technical things to be where the surgeon wants them but without going into a lot of details we'll just stick to the fact that the scans are what Dr. Jensen expects to see with no surprises.
3) Julia stays healthy healthy healthy in the coming months!  She has a cold right now and had a sinus infection last week so we need to get this household healthy and stay that way until after the surgery.  April is obviously better than February for cold/flu season but still lots of yuckiness going around.
4) That surgery itself goes smoothly, along with recovery!!!
5) All the other little details that don't matter nearly as much as the things above but still make life easier.  That our jobs are understanding of the fact that things will be hectic for a few months, that we find a way to piece together 6 weeks of in-home care for Julia so she stays safe post-surgery, that daycare is flexible and maybe just maybe works with us on being out that long without full pay the whole time (a girl can dream right?), that insurance isn't a pain in the rear end, etc, etc, etc.

After we're done with the CT scan I'll update and also give those that want it a bit more detail about the surgery itself.  Feel free to tune out if you're squeamish, I totally understand.