After a few weeks here at WakeMed, it's become increasingly obvious
that the various combinations of drugs aren't controlling the seizures
well at all. He's still getting clusters of them daily and so it's
time to see what a pediatric neurosurgeon has to say about it.
Several theories have been thrown out there for us to consider with the
leading one being cortical dysplasia (an area of his brain didn't
develop properly). There have also been suggestions that there may be a
tumor (something you wouldn't necessarily see with MRI), stroke, and a
couple of other suggestions.
You know, in the beginning we thought we were home free...Alexander had
made it to term and he was such a beautiful baby (and still is, for that
matter!). We had no idea that we would look back upon Nicholas
as being the easier of the two even with his longer initial stay in the
hospital after delivery!
Pop quiz time! Which do you think is more intelligent: moving a seizure-prone baby
40 miles west or having healthy neurosurgeons come 40 miles east to see
him and the data? If you give the healthcare industry a set of choices,
they invariably seem to take the least intelligent/most insane option.
We understand the liability concerns and the likelyhood that risk
management would go ape at the idea of a Duke doctor practicing at
WakeMed but liability law isn't a suicide pact, either. Especially when
Mayo Clinic and Cleveland Clinic would provide opinions on any data we
sent their way. (We would later figure that the motivation for Duke not
really wanting to see Alexander or the copious data on him has more to
do with our friends George Washington and Abraham Lincoln than it does
any liability concerns...i.e. telephone consults are typically not
reimbursed by insurance companies). But still...
So Alexander gets a $3,100 ride in an ambulance to Duke Medical Centre
today to see what their pediatric neurosurgeon has to say about his
condition.
Upon arrival, I remembered something that I had forgotten when my
stepfather was over at Duke for his procedures. Intentionally, that is! The place is
literally a rabbit hutch...the rooms are tiny compared to the
ones they have at WakeMed. And when I say tiny, I'm referring
to the black hole of Calcutta tiny, much like the amount of personal
space on the average train of Calcutta during rush hour! The rooms
are SMALL! Did I beat that dead horse enough?
The other thing you learn quickly is that there is a world of difference
between a teaching hospital and a regular hospital. That means you get
interminable numbers of residents poking their head in and interrogating
you about your child's case. That rather gets old after the third or
fourth time, particularly when all of the residents feel free to stop
by one right after another. Once, maybe twice...but when the charts
and the MRI films are sitting on the table and are available to you,
how about you read the chart and satisfy your curiosity before
interrogating us for the whole story again, eh? Thanks!
We wouldn't discover until later that evening that Duke's parking is
particularly more expensive than WakeMed's. Like the rates are twice
as high! Unfortunately, Alexander being at Duke also means that I've
got that long commute again (I thought being bought by A4
meant we were done with that long commute! Darn. And even though
Duke is slightly closer, that hardly makes a difference when you have
been at work all day and you're going down that lonely road at night!)
After Alexander's U-turn back to WakeMed, Gramps decided he couldn't
wait any longer to see his newest grandson and made a quick trip to
North Carolina for his first look at the boy.
I think it's safe to say he was pretty impressed but then it's hard not
to be when you're as cute as Alexander is! (Not that we're biased about
that or anything...)
But as important as it was for him to see Alexander, his trip had a
second purpose and that was to let two parents under stresses that no
one should really have to deal with know that we're not alone in that
dark night. And sometimes that really makes the difference when it
comes to dealing with such a situation. We know we're not alone and
we're incredibly thankful for that...be it God or family or friends...
any good thoughts are greatly appreciated and make those lonely nights
a lot less lonely!
One week after being discharged from WakeMed, Alexander has done a
U-turn through the Children's Emergency Department at WakeMed. He had a
cluster of seizures this morning so we got to see where Mommy works a lot
more up-close-and-personal than we wished.
Dr Saad and the nursing staff was wonderful (nice to see they take care
of their own!) and we even got to see Dr Saad start an IV. That's a
rare thing to see a doctor do, so I'm told... :)
Thus begins his second stay at WakeMed to try to find a cause for the
seizures and a plan for eliminating them!
Today we got the results of the EEG from Dr Rathke where the theory
behind the seizures is still considered resolving blood from a bleed
that occurred right at birth.
That means medicines for the next few months to try to control the
seizures and then grow him out of the medicines at that time.
Our little guy's smiles are to die for but we got a happy bonus today...
Alexander's first laugh. OK, by we, I actually mean Mommy
because I've yet to hear him laugh.
But that's OK...those smiles are worth just as much to me!
Alexander underwent a six-hour video EEG today to try to deterine the focal point of the seizures and determine if there are any more hot spots than the one we know of from previous EEGs that were performed upon him at WakeMed.