Well, 2 days post-sugery and it couldn't be going better!  Cody's been calm, happy, a little groggy but in general very much himself.  And the best part is (so far) he doesn't even act like he knows the injuries are there!  So no bothering with them.  Thank you Lord!

Don cleaned the wounds for the first time yesterday while I held my breath - here's how they look under the bandages.  They're covered by steri-strips so you can't see much.  This is the one on his left chest - the device is just under where the bandages are. 

This is the incision in his neck.

He still has a stick neck and has trouble turning his head to his right - but can turn it to the left perfectly.  It doesn't seem like his leg bugs him at all.  Course he's still on codeine regularly.  It's amazing and wonderful to see him sleep so much.  It is SO good for him to get such good, sound sleep.  There is nothing better for seizures than getting good sleep.  So for that we're grateful.

Casey came back to us  yesterday at about 1pm...happy to be home...but Kim said he didn't really every seem distraught at being separated from us.  He slept great both nights at her house!  Thank you Kim - for a gift beyond measure.  We were able to bring Cody home and completely focus on him for 2 days - just what he and we needed.

But we missed our dear Casey and are glad to have him back in the mix.  I'm told he was quite entertaining at the Case's!  That's our update for today - off to church!

with much love, Shawna 

Hi there - I'm happy to say that Cody slept through the night wonderfully - didn't seem bugged at all by the incisions or any pain.  We gave him codeine every 6 hours over night and he did just great with that.  And (yay) when he woke up at 7am this morning, his personality was right back on track.  He was bright eyed, clear eyed, and ready to party.  He ate a huge breakfast, has had a bowel movement (yay again) and is doing just great.  Still no sign of pain or even any sign that he "gets" that he has 3 areas covered in bandages.  I will say, though, that it's hard for him to turn his head to the side from the neck wound.  BUt it doesn't seem to bother him.  We have him in a high neck turtleneck so that spot is covered.  He hasn't reached to the wounds on his leg or chest either.  It's hard to pick him up because you can't touch his chest or arm area -- so we kind of scoop him up from behind. 

So we started with codeine every 4 hours, now we're giving it every 5 hours and overnight it was every 6 hours.  We'll just keep increasing the hours between doses if he keeps seeming to tolerate it well.  Course as the local anesthetic and anesthesia wear off completely, I'm expecting more soreness - so we may have to go back to a 4 hour schedule - we'll see. 

Here are some details from the neurosurgeon who met with us twice:  Dr. Ojeman.  He was a great guy - probably in his 40's - and I think I broke the ice by saying "hey you're like Dr. McDreamy!"  (Grey's Anatomy reference.)  He laughed and so did all his nurses.  He was fascinating to talk to.  To my surprise, he said the little round device CAN be removed nowadays if it proves to not affect seizures.  So in a couple of years, if this doesn't help at all, they can take it out!  I had NO idea - all the latest research I read didn't say that.  He said they leave the wires in because they're actually wrapped around a main nerve to the brain.  But if I had known you could remove the "box" - it would have seriously made my decision much easier.  Even our neurologist didn't tell us that.  So my advice, if you're contemplating this, is demand to talk to the actual neurosurgeon long BEFORE the surgery.  They waltz him in on the day-of....but his info would have made me feel so much better if I'd have known weeks ago that the device could be removed. 

I also said to him, "we've had Cody evaluated for brain surgery and he has a seizure focus in the hippocampus - but not a big enough focus to operate."  He said, "yes I know - I know his whole history - Dr. Saneto presented him to us long ago."  I liked hearing that.  Great thing about Children's hospital here in Seattle - they COLLABORATE constantly.  so months ago all these brain people were discussing Cody.  And they will continue to.  I told Dr. Ojemon that in 2 or 3 years I was advised to do another PET scan to see if the seizures have focalized more in the hippocampus - making surgery an option.  He said "that's the plan - to re-check consistently."  I asked if the VNS every posed a problem with brain surgery and he said they are totally compatable.  VNS is also compatable with PET scans and MRI's.  He said the hippocampus is about the size of your pinkie and they would just remove the whole thing if that option arises in the future.  I asked if that severely impacts memory and he said that if it's damaged enough to remove it - it will only help on all levels to get it out of there.   Fascinating. 

Then we met with the nurse who will be ramping up the VNS in 2 weeks.  She told an interesting story about a little boy who just had a VNS placed and she said he had "tons" of seizures.  I said, "Cody had 55 seizures in 48 hours at his last EEG - did this kid have THAT many?"  "Yes," she said.  And shortly after the VNS was turned on, the boy went seizure free.  That was great to hear!  Course everyone kept reminding us that there's about a "50%" success rate and that's only in kids over 12.  Kids under 12 have not been studied because the VNS is not approved under the age of 12.  In fact, Children's is the only hospital (I think on the whole West coast) that performs VNS on kids under 12 - especially kids as young as 3.  Dr. Ojeman says he places about 25 VNS's a year total.  So I felt we were in good hands.  He did quote a statistic that of the younger kids - they've found (at Childrens) that about 30% have become seizure free.  There's an interesting article below on how much more successful VNS is when it's placed early on.  So we feel some fresh hope - and I can honestly say that (so far) I'm really glad we did this.  The impact is far less dramatic that I anticipated.  I will make Don be the one to cleanse the wounds today (we have to clean them once a day and re-dress) - and I will take over the job on Tuesday when he goes back to work.  I am super squeemish about blood and stitches....

I hope Cody continues not fuss with the incisions - and if so - that will make life much easier than I expected post-surgery.  He has had a couple of seizures since he got out of surgery which is normal.  The VNS isn't even turned on for 2 weeks so it couldn't do anything yet. 

Last night we had a lasagna deliver that is *seriously* the size of half a kitchen table.  It is the biggest vat of lasagna I've ever seen.  We could eat it for a week!  Thank you Judy Palouzzo!  YUM! 

Casey comes home today at noon - can't wait to see him!  He's done fabulous at Kim's!  Slept like a log on the first night - haven't heard yet about night #2.  But has seemed to be unphased that mom and dad aren't close by.  Whew. 

So all is well here.  Your fervent prayers on Cody's behalf have sustained us and are no doubt the reason for our peace of mind.  Thank you thank you thank you.

with love, Shawna

Early Use of VNS More Effective

A study presented to the 54th annual meeting of the American Academy of Neurology (AAN) in Denver, Colorado shows that Vagus Nerve Stimulation Therapy™ (VNS Therapy) offers a higher success rate in achieving seizure control among people with drug-resistant epilepsy when used earlier in the course of their condition.

The study found that VNS Therapy was more effective when used within 5 years of seizure onset or after trials of 4 or fewer anti-seizure medications (AEDs). "Many patients have had epilepsy for well over 5 years before being treated with VNS Therapy, even if medications have been unsuccessful in controlling their seizures," said study investigator James Wheless, MD, director of the Texas Comprehensive Epilepsy Program at University of Texas Medical School at Houston. "This study demonstrates that people with epilepsy shouldn't wait through years of failed drug therapies and associated side effects before trying VNS Therapy — the therapy works better when used earlier in the treatment course."

This study prospectively followed a group of 120 VNS Therapy patients who had been diagnosed with epilepsy less than 5 years before implantation or who had tried 4 or fewer AEDs to determine if using VNS Therapy earlier in the treatment course improves efficacy. The control group was identified retrospectively from the VNS patient outcome registry and was composed of VNS Therapy patients who were implanted more than 5 years after diagnosis.

Preliminary results showed that after 3 months of treatment with VNS Therapy, 15% of the study participants reported no seizures, a three-fold statistically significant improvement over the control group. Additionally, and equally as important, patients' quality of life after 3 months of VNS Therapy was "better" or "much better" based on several quality of life indicators, including seizure recovery period (postictal state), alertness, mood, verbal communications, memory, and achievement at work or school.

"Side effects from AEDs, including weight gain or loss, fatigue, drowsiness and memory problems, often have a serious impact on a patient's quality of life, especially if the patient is taking more than one medication," said James B Renfroe, MD, paediatric neurologist at the Child Neurology Center of Northwest Florida. "VNS Therapy is one treatment option [which] frees a patient from these life-altering side effects, while at the same time controlling their seizures."

It's 6pm and we're finally back from the hospital - got there at 10am.  It's been a looooooong day but I'm happy to say Cody had a successful surgery with no complications.  He's currently taking a nap snuggled up in daddy's arms. 

It seems like years ago that this picture was taken.  But it was actually at 2:30 this morning.  We woke Cody up to have his final meal since he wouldn't be able to eat until after noon.  I took this photo of his little chest "before" - knowing it would never look the same again.  His little chest would never again be smooth...scar-free....flat.   

We put him back to bed after his bowl of oatmeal and banana....and then it was off to the hospital!  We were nervous Cody would be a wild animal having had no food - his meds make him voracious and the second he wakes up in the morning he goes to his high chair and starts screaming for food.  Luckily this morning he was very mellow - and even at the hospital during the long wait before surgery - just snuggled with us and was very calm.  Sometimes I wonder if children like him have a 6th sense -- about what's going to happen.  We were blessed that he was so easy rather than the screaming sad little boy we'd anticipated in the waiting room!

It's amazing what you go through when you know your son is about to be "cut" with a surgeon's knife.  Your awareness of his skin, his hands, his feet becomes so acute.  You memorize every little thing because horrifyingly - your child's sacred body is about to be invaded by a stranger's knife.  It is so counter intuitive - so evil feeling.  Such an oxymoron knowing that he will be cut open - yet it is for his "good."  We took lots of close ups of his little body - soaking him in. 

Then the Dr. came in and allowed me to give Cody the sedating medicine.  I squirted it in his mouth (again - SO counter intuitive.  "here honey, drink this so they can take you away from me and slice your body open....")  But I did it and Cody slowly drifted away on my lap.

The surgery took 2 hours.  Then he was in recovery about an hour.  The Dr. came in and said everything went well - no problems.  They explained how to care for his 3 wound sites.  Then he was brought back to us - still groggy.  He didn't handle awakening from the anesthesia very well - turned into a wild animal for about 15 minutes.  But after than (and since then) he's been groggy, lazy, and pretty peaceful.  I don't detect one bit of pain.  We're giving him a strong pain medicine every 4 hours for a few days.

 Here are his two wound sites immediately after surgery.  Not very gory - very clean and tidy.

And here's his leg where they did the muscle biopsy.  They will test it for tons of mitochondrial disorders - one last attempt at trying to discover what causes his seizures. 

All the pin pricks around it are from local anesthetic.  So that was our day.  Grueling, but successful.  We go back in 1 week for a wound check with the neurosurgeon.  Then a week after that for another wound check.  Then every 2 weeks to slowly turn on the device and ramp it up.  We are exhausted so I won't write more today.  I got so many lovely text messages, phone messages and email messages saying you were praying for Cody.  THANK YOU.  It was so heart warming to get a text right at 11:30 saying "thinking of Cody right now - praying for you all!"  We count ourselves the luckiest people on the planet for all the love our son inspires.  A church friend is bringing dinner over as I write this.  Another is bringing a meal later this weekend.  So much love sent our way. We are grateful for so much tonight.  cody is alive and well.  We have the support of saints.  And we have a Great Physician who knows far more than those Dr's do about Cody's future.  And once again, although we solicit modern medicine to do all it can for our son, we put our ultimate hope and faith in the One True Healer.  We pray this VNS liberates Cody from the prison of seizures.  Let it be so!

with love,

Shawna