We are happy to report that Ben's seizures have already been dramatically reduced - both in frequency and severity! Amazing!! I was told by his neurosurgeon, Dr. Kurtis Auguste, yesterday that this is probably an effect of the vagus nerve having been poked and prodded. This kind of mechanical manipulation can cause the nerve to fire more. So, even though the device hasn't even been turned on yet, we are seeing some positive results. This seems like a great sign to me.
Dr. Auguste, the pediatric neurosurgeon who implanted the device in Ben, has been amazing. Contrary to my expectations (we all know surgeons are not known for their bedside manner ;), he has been exceedingly warm and available. I would highly, highly recommend him to anyone needing a neurosurgeon. We are just so grateful to have access to this level of care and experience. He made the surgery a non-issue, which is what great surgeons do!
Friday, August 26, 2011
Saturday, August 20, 2011
Success!
Ben's surgery yesterday went really well. His neurosurgeon, Dr. Auguste, said that his vagus nerve was very big for a child Ben's age so he had no trouble finding it! He recovered well, albeit grumpily, from anaesthesia and was home napping in his own bed by 3pm, 7 hours after the surgery had started.
He is still a little fussy but healing well. Thanks to all of you for sending your warm wishes yesterday. I got so many text messages and emails I could barely keep up! It made us feel very loved :)
In about two weeks, Ben's neurologist, Dr. Sullivan, will turn on the generator to start stimulating the vagus nerve. The stimulation frequency and amplitude will start out very low to minimize any discomfort to Ben. So it will probably take about 4 months for us to know whether or not it's helping him. But we are so hopeful that this will at least reduce the number of seizures he has every day, and thus give him a chance at a better quality of life.
He is still a little fussy but healing well. Thanks to all of you for sending your warm wishes yesterday. I got so many text messages and emails I could barely keep up! It made us feel very loved :)
In about two weeks, Ben's neurologist, Dr. Sullivan, will turn on the generator to start stimulating the vagus nerve. The stimulation frequency and amplitude will start out very low to minimize any discomfort to Ben. So it will probably take about 4 months for us to know whether or not it's helping him. But we are so hopeful that this will at least reduce the number of seizures he has every day, and thus give him a chance at a better quality of life.
Wednesday, August 10, 2011
Upcoming Surgery
We got the confirmation letter today that Ben is scheduled for surgery next Friday, August 19th. We have to be there at 6am for his 7:30am surgery. The letter explained how we may or may not be with him while he goes under - depending on the anaesthesiologist's determination. The letter explained that, in some cases, the child becomes agitated while being put under and really benefits from a parent being there to comfort him. I've been with Ben before while he's put under anaesthesia. This letter explained it all in such a matter-of-fact way. But I remember holding him while the mask is put over his face, him looking me in the eye, not knowing that we were drugging him to sleep. I remember watching him drift off to sleep and not being able to hold back my tears, crying uncontrollably. It reminded me of putting my dog to sleep. There's always a risk with surgery, albeit a very small one, that the child will never wake up. Right? Doctors out there, tell me I'm wrong. It is panic-inducing.
I know that we are doing the right thing. I know that this is the best option for Ben. I know that, if it works, it will be so much better than flooding his brain with drugs. Drugs that are severely affecting Ben's ability to function. We take for granted that the world is represented to us in a certain way. Have you been on drugs that significantly altered your perception? Can you imagine having to live that way all the time? He doesn't even know what it's like to not be on drugs. Ben has continuously been on drugs since he was 14 weeks old.
I'm scared to death and this letter didn't help. Part of me doesn't want to OK the surgery because I'm scared. Scared to tears. Although I know this is Ben's best chance of getting some relief from the seizures, I don't know that I'll ever forgive myself in the off chance that something goes wrong. After all, they call this 'elective' surgery.
I know that we are doing the right thing. I know that this is the best option for Ben. I know that, if it works, it will be so much better than flooding his brain with drugs. Drugs that are severely affecting Ben's ability to function. We take for granted that the world is represented to us in a certain way. Have you been on drugs that significantly altered your perception? Can you imagine having to live that way all the time? He doesn't even know what it's like to not be on drugs. Ben has continuously been on drugs since he was 14 weeks old.
I'm scared to death and this letter didn't help. Part of me doesn't want to OK the surgery because I'm scared. Scared to tears. Although I know this is Ben's best chance of getting some relief from the seizures, I don't know that I'll ever forgive myself in the off chance that something goes wrong. After all, they call this 'elective' surgery.
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