Wednesday, May 25, 2011

The Bug's Big Day

***I will preface this post with a warning.  There will be two pictures in this post of a 3D CT scan of the Bug's head.    Some people may find this to be graphic.  There is also some description of the surgery that will take place.  I don't think it's terribly graphic, but if you're squeamish, you may not want to read it.***

Yesterday, we spent the day at Riley Hospital for Children, "Bugsy's hospital."  He had a 3D head CT in the morning and then an appointment with both his neurosurgeon and plastic surgeon in the afternoon.  Some of you have been asking how the day went, so I thought I'd give you a rundown.  (This is copied nearly word-for-word from an email I typed earlier, so it may read somewhat like a letter rather than a blog post.  Sorry...didn't feel like rewriting!)

The CT went fine.  He was NOT happy about the IV.  They wrapped him in a sheet like a burrito...I had to literally lay across his body and hold onto the bed on the other side to keep him still even in the burrito!  He is really strong!  Anyway, it took 2 different veins and lots of digging before they got the IV in.  It was funny, though...once the ICU doc that does the anesthesia came in it went fast!  Bugs was asleep before he finished injecting the medicine...in mid scream he started snoring!  Not exaggerating.  I laughed.  The scan only took about 5-10 minutes, and then he woke right up.  He was groggy for half an hour or so, then we went to lunch and he perked up.  :)

The appointment went pretty well. They are not going to be able to address the back of his head at this time, so he may or may not need another surgery after this one to correct the back.  It will depend on how his head grows after this surgery.  They are hopeful that the asymmetry in the back will become a purely cosmetic issue after this surgery, and we won't correct him for a cosmetic issue.  For some reason (and it's VERY obvious in the CT) his head is growing up and back, but not forward at all.  Comparing earlier scans, his face looks more "forward" now compared to what it way, meaning that his forehead is almost pulling back from the rest of his face.  He has virtually no brow bone, and once again very little eye protection.


This is straight on from the front.  Note the asymmetry of the sides and the height at the top of the forehead.  There's also a very notable hole in the for


Straight on from the left side.  You can see how far backward he's grown, here. (It's not as noticeable with skin on!)  Oh...and the giant holes...

The gaps, which we thought were starting to fill in (and the surgeons did as well) are quite amazing.  Ear to ear, aside from a small bit of bone just left of center, he's got about an inch wide headband where there's absolutely no bone.  In the scan, you can literally see straight through his head.  There is NO protection for his brain at all there.  Just above his eyes, the width of his eyes (outer edge to outer edge) there's another spot that ranges from half an inch wide to an inch or side wide where there's NO bone.  There are several other smaller spots as well, but for some reason, a large amount of the spots where they had to cut the bone are simply not healing.  They don't understand why #1, he's reverting so much to his pre-surgical state, and #2, his bone isn't replenishing itself as it should.

For the surgery, as I said, they will not be able to address the back.  With as much work as they are going to have to do on the front, there's simply no way they can safely position his head to work on the back as well.  They will be starting at the front, above the eye sockets, and they will work their way back as far as they can safely go.  They'll be able to use the same incision line, which they are actually surprised about with the way his head has grown.  They were hoping to be able to cut out the scar and leave him with a pencil-thin line like he had after the first surgery, but that is very unlikely with what they are planning.  They'll be moving his forehead forward to create a brow bone, widening him through the temples, and reducing the height.  They're hoping to address some of the asymmetry on the sides as well, but not the back.  They'll remove any existing hardware.  He has several titanium screws and a titanium plate on either side of his head at the ears.  (We didn't realize this...or didn't remember...who knows!)  They will remove that existing metal and replace it as needed.  There are some screws that have come lose and are tender to the touch, so they will take those out.  (Yes, I did just say the Bug has some screws loose!)

As far as those gaps in the bone go, while they are still hopeful that they'll be able to fill them with "leftover" bone as they reconstruct, they are fairly certain that he will need a rib graft and/or titanium mesh to fill the gaps.  IF they can take just one or two ribs and that be enough, they will do the rib graft.  If it looks like they'll need more than 2 ribs, they will use the titanium mesh or a combination of ribs and mesh.  They'll prep him for the rib graft whether they end up needing it or not.  One concern they have for a rib graft for him is that ribs typically grow back, but since his skull bones aren't growing together as they should, they're not sure whether he'll regrow ribs, either.  One or two missing ribs isn't a huge concern, though.

Likely the reason he continues to have headaches is that his nerve endings, especially in that headband region, are right at the surface.  They would normally be covered by bone, but his obviously aren't.  Once they cover the gaps, he should feel a lot better!

We're expecting about 12 hours in the OR again...2-3 hours to prep, 8-9 hours of actual surgery...12 total hours from hand-off to recovery.  It's going to be harder for her to open him because she has to be so much careful with the "exposed" brain, but then removing the bone should be a bit easier because she doesn't have to make holes, they're already there.  They're anticipating we'll leave the hospital either late Sunday or sometime Monday.

That's pretty much the gist of it.  The neurosurgeon said we're "pros" at this, however unfortunately.  She also said she's praying this will be his last surgery.  :)  Have I ever mentioned how much we love our surgeons??

For the next month, I will try to carry on as normally as possible in the blog world...but please be forewarned that the day of surgery I will be using this as a place to update all of you as we are updated, and will likely post several times.  After that, at least for the next week, I may be updating daily or perhaps not at all.  It'll depend on the progress and how we're all feeling.  In the meantime, just know that we're ready for this.  Some of us are more nervous than others, but we all know that God is in control.

And the Bug?  The Bug is the most ready.  He is ready for a "normal shaped head."  He wants a "small head like Little Lou."  It's almost game time.  We're ready.



10 comments:

Carol said...

Praying for you guys!!! Cranio sucks! At least now you know what is going on. Though sometimes it doesn't help either...

http://www.caringbridge.org/visit/little_christina

lydiasgt said...

Praying for you all! Thank you for sharing the severity of what is going on.

AEK said...

Those CT scans are amazing. Thanks for sharing. I will keep him (and your family) in my prayers.
Blessings,
Angie

Misty said...

Wow! Bug doesn't look as weird as his CTs make it! I'll be praying that this is the last surgery for him and that his headaches go away quickly.

Your family is a great inspiration with as brave as you all are. I'd be a complete WRECK and here you are telling it like it is!

Lots and lots of prayers heading your way. Good luck, Bug!

Eco Baby Mama Drama said...

Praying for you guys! Riley is THE best!

Elizabeth said...

Thanks, Bri. We love Riley. Our doctors are fabulous. If we ever move, we will find a way for Bugs to continue seeing his surgeons. There is no question in our minds that they are the best possible doctors for him!

Anonymous said...

Oh Elizabeth! That's lot to do and pray about. The picture of him was perfect for the end of this article! He's excited, ready, and even has his tools for the work! Praying for your family!-Amy M.

Samantha said...

I hope his surgery goes well. Best wishes!

boyzrule said...

Prayers to you all on that day. You are right, it is a "big" day. Positive thoughts....

lydiasgt said...

Praying for you guys! Thank you for the update on how he is doing!

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