Initial meeting with Surgeon:
Received an explanation of surgery including potential risks and benefits of VNS therapy. Christian only
had a brief physical exam because he had been in the hospital less then 4 weeks earlier and been through
thorough testing. Surgery was scheduled for two weeks later.
Night before surgery:
Everyone knows where Christian is going in the morning except him. We can't help but feel guilty about
that. We can't explain it to him, as he would not comprehend that. He went to bed happy not knowing
that once the day got going he would go through a major operation and come out feeling like a freight train
went through him. It's not fair and having to make that decision for him simply sucks. The grounder in
this instance is Wendy, she reassures me that we medicate him 5 times a day and give him a total of 9
medications in a day -all without explanation. It is also done TO him for his own good -and at what cost?
The medications are harsh and have lasting effects on the liver and other organs. This surgery while painful
in the short term will hopefully give us the ability to reduce his seizures and his medication load. Think
long term not short term --this is a motto that would be repeated often over the next few days.
Day of Surgery:
Got up at 3:30 to get ready and drop Justin off at a friendâ€™s house before leaving town at 6:15 am.
Arrived at hospital (50 mile ride) at 7:00 for 9:00 procedure. No eating after midnight, no liquids after 4 am
except medications. We reported to same-day surgery and were led to the pre-op room/cubicle. Each pre-
op room (30 in all) includes a bathroom, bed and of course medical equipment First Christian had to
change into a Johnnie at which time we put head phones on him and a 50's - 80's CD. He began to sing
and dance and entertain the other patients. The two cardiac surgery patients across from us were laughing
and smiling while he eased their wait to surgery all the while not really understanding what he was in for.
Every person that arrived was greeted with Christian's customary greeting -"Do you like hockey", "what
We spoke with a bunch of nurses, doctors and anesthesiologists. We were given all the standard potential
risks including breathing problems, bleeding problems and death. We were also given the option to go to
the ER with Christian to make the transition easier. The anesthesiologist explained that anesthesia can go
a) start and IV, give a sedative once in the OR and then intubate and start the operation. This was
the preferred route as there is period between the "heavy sedation" and start of true anesthesia
(after intubation) at which you can stop breathing.
b) use gas to induce the heavy sedation -then quickly get an IV going (this takes a minute or two at
which point there may be a lack of breathing) then do the intubation. The time lag where you
may not be breathing is longer in this method and hence not preferred..
After trying to look in Christian's mouth and that being received by near hysterics (because of a failed
Strep test 6 years earlier in the ER after which he has been terrified of anyone going anywhere near his
mouth -causing a panic attack) the anesthesiologist told us that he would have to gas him as he would never
tolerate an IV. We assured him that Christian would not like it but would not give any problems. He was
amazed that he was able to do so without any tears shed. He could not believe that Christian would not
allow him to simply look into his mouth but would take a needle without incidence. When you've been
pricked as often Tin (Christian's nickname) you are used to it.
A shot of Midazolin and a happy ride on the gurney with Dad and Barney leading the way to the OR.
"Beep, Beep -make way, Barney is off to surgery". Once in the OR I helped move him to the operating
table and then gave him a snuggle and on the count of three his eyes rolled back and he was out cold. I
gave him a quick kiss on the cheek and turned around and walked out.
We went to the waiting room (equipped with a flat panel display of all surgeries going on including OR #,
Surgeonâ€™s Name, start of procedure time and a comment field), and waited the two hours we had been
told and the surgeon arrived and met us in the conference room. She started with â€œeverything went
perfect â€“any questionsâ€�? She said that everything that could have gone right did and that it was an
uneventful surgery. He was on his way to the PICU (pediatric ICU) and we could go down there and meet
The Vagus Nerve Stimulator ... the uncut version.