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."