Overview
Four years ago, Laurel was diagnosed with a stable, unruptured, fusiform
brain aneurysm on her
middle cerebral artery (MCA)
in the area above her right ear.
Procedures for
removing aneurisms in the MCA are performed by choking the aneurysm off with a
microsurgical clipping technique,
performed via craniotomy,
while most others can be treated using a
coiling technique
which is performed using a minimallly invasive endovascular method. The methods
are significant to us because Laurel's aneurysm, being located on the MCA,
makes it a poor candidate for use of the endovascular method.
I'm going to be updating this article day-by-day. Please check back often!
January 28, 2018
We are preparing for a trip to Florida tomorrow. We're not
visiting Disney World or even going on vacation. And we're not
bringing kiddo with us. It's a getaway for two... to the Mayo
Clinic.
The Mayo Clinic was Laurel's choice of medical practice for taking care
of her aneurysm.
I think it's fair to say the discovery is what really pushed
Laurel to have the vertical gastric sleeve surgery in 2016.
The resulting weight loss resolved a number of problems
that would have added certain risk to the procedure we're
preparing for in the coming week.
For my part, I am working very hard to convince myself that we
are in the place we're meant to be in right now. Faith in that
notion ought to relieve me of the stress I'm feeling.
January 30, 2018
The Mayo Clinic in Jacksonville is comrpised of three interconnected
buildings. One can walk from one building into another and never really
know one had changed buildings. The Cannaday and Davis buildings contain
clinics and administrivial functions, and they are on opposite sides of
the Mayo Hospital building.
We arrived in Florida on Monday evening, and on spent most of
Tuesday moving from clinic to clinic as directed, often repeating
information we'd told the previous clinician. We started in the
Cannaday building, where we met Laurel's physician and talked strategy.
We also found at the time that Mayo never received the image files
from our local hospital. This, in part, is what put us on track to
schedule a diagnostic cerebral angiogram.
The angiogram is essentially comprised of a probe, which gets
inserted into the body, a dye, which gets injected into the body,
and a large machine which captures images from the probe's point
of view. At least, that's how I understand it. The angiogram was
itself a surgical procedure, albeit a minor one.
UPDATE:
All work and no play makes Jack a dull boy, and Jill a dull girl.
We're in Florida for goodness sakes. We're looking to spend at least
a little time in the sun. So earlier in the day we got a recommendation
for a seafood place, and tonight we visited. I give you the Safe
Harbor Seafood Company, right on the water.
The blackened Dolphin and blackened Trigger were outstanding. The
conch fritters were a trip back in time for me.
January 31, 2018
We reported to the Mayo Hospital at 6 AM on Tuesday morning
and, due to unforseen circumstances, didn't actually have the
procedure until close to noon. The angiogram took about an hour
and a half. It still ended up being a very long day.
We spent the evening just laying around watching TV and ordering
in. We ordered from an American gastro pub and the food was awesome.
Laurel got caught up on all the grease and carbs she'd been missing,
and we slept pretty well.
Perhaps part of the reason we slept so well was the phone call
we received from the neurosurgeon's nurse we were able to schedule
the craniotomy for next Monday.
February 1, 2018
Today is Wednesday. We slept in until 9 AM even after having
napped for a little while the preceeding evening. We've a consult
scheduled with the neurosurgeon for early this afternoon.
The surgeon told us a little bit about the craniotomy, and the
risks involved. The plan is for an incision behind the hairline
beginning above the ear and extending upward toward the top of
her head, then basically folding the skin forward to expose the
bone. (My palms are getting sweaty as I type now.) There were two
considerations he pointed out:
- There is a network of nerves that seem to originate from the
area of the ear and radiate forward to the face. Among these is a
nearly invisible nerve which connects to the muscle used to raise
the eyebrow. If the nerve crosses the "fold" of the skin, it is
possible that the ability to exercise the eyebrow muscle may be
temporarily retarded after the surgery. Think of it like what
would happen if you were to fold a garden hose over onto itself.
- There is a muscle attached to the skull called the temporalis
which protrudes downwards from the skull and wraps around the
jaw, at which point it's known as the masseter muscle.
Image credit: Duke University
The neurosurgeon explained he would have to make a split in the
temporalis to get to the bone beneath. A byproduct of the
incision is some affect the act of chewing, probably until the
muscle heals.
There's also some concern about the split causing atrophy of the
portion of the split closer to the face as a result of
decreased blood flow, which could result
in a minor disfiguration near and behind the zygomatic process,
which is the portion of the skull at your temples. The neurosurgeon
characterized this as happening to most, but cosmetically noticeable
in some.
Image credit: Wikipedia
We'll likely ask more questions about things when we meet later this afternoon.
A note on yesterday's angiogram: Laurel doesn't seem to be experiencing
any discomfort today. The incision site (I guess I'll call it that) looks
good, and only minor bruising is starting to appear. She was good last night,
staying off of her feet and letting me handle picking things up off of the
floor. She hates not being able to do for herself, but she's a good patient.
UPDATE: It's later in the evening. Our appointment with the neurosurgeon ran
very late we didn't actually talk with him until over an hour after our
appointment time. During our visit, he answered every question we threw at him,
but we came away with a very nice (??) overview of what will be involved with
the procedure on Monday.
One other thing we learned was why the CT scans from our local hospital are
still important to him: CT scans offer context the angiograms don't. Put another
way, the angiograms highlighted the MCA and the aneurysm, but blacked out everything
else. The benefit of the CT scans, even though they're less precise, is that they
show the MCA and the aneurysm in relation to everything else - the bone, muscle,
and other tissues beneath and above.
The neurosurgeon is considering ordering a CT angiogram (CTA) in case the local
hospital doesn't come through with the scans they did last August. A CTA differs
from a standard CT scan in that the scan includes the injection of a dye to increase
the definition of veins and arteries in the image.
The surgeon described Laurel's procedure as a right pterional craniotomy.
Google it at your own risk. Also, Laurel's aneurysm is located on her MCA at
a position roughly equal to the Sylvian fissure, which is the boundary
separating the frontal and temporal lobes of the brain. This is a huge bonus for
us, because it means no navigation will be required inside the brain.
One of the things that will happen at the close of the procedure is that they
will inject a fluorescent dye into Laurel and monitor her circulation to ensure the
clip is stable and that they didn't adversely affect anything else. I likened it to
when automotive technicians added a fluorescent dye to the gas in my car, then went
under the hood with a black light to look for compromised seals.
Finally, there's an additional side effect to the procedure. Laurel may experience
some temporary swelling in her right eye as a result of a pooling of fluids. The
swelling will go down.
At this point, we're in vacation mode until Monday morning at 6:30 unless
the surgeon orders the CTA; and the surgeon ordering the CTA means they were unable
to get the imagery from our hospital at home.
February 2, 2018
Slept in again. We were up late, having driven down to St. Augustine for dinner
with friends at the Gypsy Cab Co.
Today is about administrivia: extending the hotel and car reservations and so
on, plus picking up a few odds and ends at the grocery store: our coffee creamer
supply is critically low.
It's nearly noon, and we've not heard from the clinic. This seems to suggest they
received the imagery they were looking for, and didn't order the CTA.
We don't have any big plans for the day.
P.S. - if you've ever questioned the value of the trip insurance offered by the
airlines, here's a tip: Laurel bought the trip insurance for this trip, anticipating
(correctly) the chance things might not go as originally planned at the hospital.
The trip insurance will reimburse us for all costs related to our extended stay.
After burning through all of the hotel rewards points I had left, the extended
reservation still cost over $2,000. Add to that the cost of food, rental car, and
so forth... it's significant.
UPDATE:
We drove to St. John's Town Square this afternoon. I got a great photo of
Laurel reclining for a pedicure with a mimosa. Dinner tonight at J. Alexander's.
The paneed hake
(rhymes with "make") with lemon butter crab sauce was insanely
good.
After dinner we walked around the square and did a little
browsing.
And our creamer shortage has been resolved.
One last thing for tonight I went down to stick my feet in the hot tub for
a few minutes and came upon a guy drunk on Bud Light who was really touched by
the notion that the hotel caters to Mayo Clinic patients. I made the mistake of
mentioning Laurel's impending procedure and he offered (several times)
to give me his phone number so I could call him on Monday if I wanted to talk.
His advice to me was to stay positive and "move on," by which I think he meant
to just take things as they come and not to dwell on them. He may have been
completely wasted on cheap beer, but that doesn't mean the advice was bad.
I thanked him by calling and asking the front desk to look in on him when I
got up to our room I didn't want him alone in or near that hot tub in the
condition he was in.
February 3, 2018
The drunk guy from last night was at the hot tub again this morning when we
came down for breakfast.
We ended up driving back to the airport to swap rental cars. Our first one
was a Dodge Journey, a small SUV. It was a brand new car, but the infotainment
center was rather bizarre and it had no back-up camera... it's surprising how
much we've come to depend on those things. Our new rental is a Ford Explorer
with navigation and a back-up camera. I guess the iPhone interfaces with the
infotainment system via an app that has to be downloaded and installed.
All cleaned up and pretty again, we'll be heading out for some lunch at
either Taziki's or PDQ, then we'll head east to see the beaches it may be
60° and overcast, but hey, it's not snowing.
We're now on what we'd call the second leg of our trip that is, we've
reached the point where our original reservations have expired and extensions
or new reservations have taken over. It's why we drove the original rental
car back to the airport this morning to exchange it for another.
This afternoon we drove out to Jacksonville Beach. It was probably about the
worst day we could have visited: cloudy and super windy.
We spent maybe 20 minutes walking along the beach and immediately sought out a
coffee shop to warm up. (We found a Starbucks a few blocks away.)
February 4, 2018
Super Bowl Sunday started out with rain, although it's warmer than yesterday --
it's 66° as of 10:30 EST.
We're planning to hit up a shop or two today scarves for Laurel to wear
around her head post-surgery, and I'm in need of some better footwear (I've
been walking about in my slip-on Chucks great for airport security lines;
not so great for all the walking we've been doing).
We'll figure out what time the game is on and order in. I'm certain today
is like Black Friday for pizza shops.
I've been noticing that Laurel has been spending a lot of time surfing
Jacksonville real estate. Today we spent the afternoon walking through model
homes in two separate real estate developments. She wore me out. But we saw
two models that were laid out really, really well.
So in preparation for the Super Bowl, we ordered a deep dish pizza from
a local place named Siena's Italian Cuisine we opened the heavy box to
something resembling a cheese wheel. They provided a marinara sauce to go over
the top. Wow was it good!!
We tuned into only the last couple of minutes of the Super Bowl. I had been
following along via intermittent queries to Siri while Laurel watched every
episode of Worst Cooks in America it's funny how every television
we own or watch for an extended period seems capable of only receiving the Food
Network and the Travel Channel. Anyway, we caught the last couple of minutes
when it was looking like the Eagles might actually pull it out... I'm glad
Philadelphia is bringing home the Lombardi Trophy, and that the Patriots seemed
professional and gracious about the loss.
February 5, 2018
5:15 came awfully early this morning, following an uncomfortable night before
surgery. Laurel was wheeled into the O.R. at 8:30 AM on the dot, with a little
pain medication in advance to help with anxiety. It seemed like the decision and
all it entailed suddenly left the realm of academic exercise in the five minutes
before she left. And in a way, I'm very grateful I had been the one doing all
of the crying up to this point.
I'm crying because they're cutting my beautiful baby's head open. I know
they're doing a good thing although I still can't quite let go of how close
the call was between operating and leaving it alone. When it's over she's going
to have screws and fancy washers holding a baseball-sized piece of skull in
place, and her face will have been peeled back and sewn back together. She will
be bruised and swollen and scarred, and we've been told about the weird noises
she'll hear from the air that got let in. Nobody wants any of this for a loved
one. The notion of this is making me cry now how will I ever keep it all
together when I see her this afternoon?
I'm back at the hotel now. I've eaten, had a little coffee, and have the A/C
working a little overtime to make up for whatever got changed yesterday the
room temp was part of the reason sleep was evasive at times. I'm going back to
bed now to try to catch up on some of the sleep I lost earlier.
UPDATE 1:
12:30 PM EST. No word yet from the hospital, but that's to be expected. After
making the previous entry I texted a few of Laurel's friends directly and
took a nap for a little while. Just got up and made a little food. I figure
I'll get cleaned up and head back to the hospital in a little bit. 1:30 PM
EST will mark five hours.
I anticipate the next word I'll hear is that she's out of surgery. I think
their practice is they take her back to ICU and do a few things (basically, this
is recovery) before I'm invited back to see her so I won't get to see her
right away once she's out of surgery. BTW, recovery in ICU is standard operating
procedure (forgive the unintentional pun) for craniotomy patients.
UPDATE 2:
12:54 PM EST: I just got a call from the hospital. The news is, "Things are
going well," and that the surgeon "is currently working under the microscope."
As with many things about this trip, the message was a little vague. I
guess the second sentence means they've begun work on the aneurysm.
The poor volunteer who phoned me is a guy sitting at a desk someplace he's
got no direct knowledge, so... *shrug*
I really liked the first sentence, though.
UPDATE 3:
2:39 PM EST: Hospital reports "the aneurysm has been clipped and secured."
We're now at hour six of the procedure; I assume this report means they're
testing and getting ready to close. Next call I receive from the hospital
should be the neurosurgeon.
UPDATE 4:
3:40 PM EST: Neurosurgeon reports surgery went well; ran long because the
aneurysm was nestled up against the frontal lobe, so extra time was taken
to maneuver in to isolate the aneurysm. Two clamps were used to cut off
the blood flow, and her vitals were constant and good throughout.
I was STILL on the phone updating everybody when I got the next call...
UPDATE 5:
5:20 PM EST: Laurel is out of recovery and ready for me to come visit!
UPDATE 6:
9:00 PM EST: Laurel is resting comfortably for the moment. She’s got all of
the symptoms we were told to expect—- headache, pain in the jaw muscles on
the right side, and pain probably from swelling behind the right eye — but
nothing more (apart from a touch of nausea, which is common in craniotomy
patients). Pain management has made her sleepy.
And I am thankful.
She was a little bit of a jerk when I got there she demanded her
lip balm and then basically told me to shut up when talking to the nurse
a few minutes later... so I sat quietly for a few minutes until she asked
for me again. I sat with her there for a few hours, in the dark, feeding
her crushed ice as she'd ask for it.
She looks good as good as a woman whose head is wrapped in a bandage
can, I guess. Her right eye looked a leeeetle droopy, but I'm not sure if
that's just the effect of the bandage or not. No bruising or swelling
that I could see, but it's possible those may set in overnight.
Drove back to the hotel, made myself a bite to eat. Started considering
this evening's entertainment options as I was typing. I could write some
code, but I think I might hafta sugar up to do it. Maybe I'll browse some
new books on my Kindle or just surf the Chive for a little while... I could
use some funny.
UPDATE 7:
11:50 PM EST: Ended up playing a few hands of solitaire and watching the
latter half of Doctor Strange. The hospital scenes read differently
now.
Tomorrow I plan to sleep in, shower, eat, and head back to the ICU.
Perhaps I'll bring the laptop along and bang out some code.
February 6, 2018
12:30 PM EST: Laurel is recovering well. She's eating, drinking, walking,
and using the restroom with assistance. Pain management still keeps her
sleepy. Some bruising happening on the right side of her face; her jaw is
still sore, and she still has that headache. By all indications, her
recovery is progressing very well. She's already had an IV removed, and
she'll get her bandage taken off this afternoon. Apparently the hospital
has a fun selection of hats from which she may choose... she's looking
forward to it.
She was moved out of ICU and into a room on a different floor late this
morning. She's sleeping again now. Lunch today is a mango smoothie with
protein powder added, and chocolate pudding. Her choice.
I didn't exactly sleep in this morning, but basically everything else
went according to plan.
So far today I got to speak Russian and Tagalog in addition to English.
Such a win.
Yesterday was pretty frenzied with constant updates basically every
call I got from the hospital became about an hour of some combination of
calls, writing update texts, an update post to Facebook, and updating the
site. I took the call from the surgeon while I was in the car, and
pulled off of the street. I sat there for an hour. I expect that updates
will be far less frequent from today forward particularly the urgent
messages and calls. I'll still respond to queries as I can.
UPDATE 1:
1:35 PM EST: Bruising is really becoming noticeable around her right
eye. She's been asleep for about the past 45 minutes. I've
been silently working through 4 oz. of steamed broccoli for most of
that time.
UPDATE 2:
10:40 PM EST: Laurel's bandage was removed late this afternoon at least,
most of it was. Beneath the bandage is a... honestly, I don't know what this
thing is. I would have expected it to be gauze... it's where gauze would go
over the sutures, along the seam where the skin was cut. Only it's not
gauze. It might be a pad from a 3M Tegaderm dressing, but with
the transparent adhesive removed from around it.
When the bandage was removed, Laurel complained of her hair being "matted"
in the back. As best as I can tell, perhaps a drop of glue fell on the back
of her head. So, doing the math (read: I'm completely reaching here), perhaps
whatever that long strip is was actually glued over the shorn skin. I heard
the nurse mention that someone was going to remove the remainder of the
dressing tomorrow, and to shampoo her hair.
I had been worried about the reveal... worried about how I would respond.
I snapped a couple of photos for Laurel to see and she wasn't exactly elated
with her current look. But I'm following Phillip's advice, and just
"[being] positive and moving [forward]."
Thank you, Phillip.
February 7, 2018
Got in a little late this morning, wrangling coffee and iced tea as
ordered.
I struggled into the room to find Laurel awake and without the remaining
dressing. A short while later she was escorted into the shower.
When we left last night, we'd requested a different anti-nausea medication
that Laurel knew worked well for her. Sometime in the night it must have been
authorized, and I was overjoyed to see her eating applesauce this morning.
A nurse came by a few minutes ago and mentioned there's talk of releasing
her today. Personally, I think I'd rather she stay through to Thursday. She's
barely eaten in the past couple of days, and at this point she's eating
applesauce. I guess I'd prefer she have a little more nutrition under her
belt before we head for the hotel.
She's sleeping again. I'm sure the shower really took it out of her.
UPDATE:
3:30 PM EST: Lots of sleeping happening, but in the breaks she's using
the toilet, and going for walks.
I need to do a little bit of grocery shopping this afternoon, because
I'm running on low on supplies at the hotel. I'll probably take off in
about 45 minutes to do that hopefully by doing so I'll avoid the rush
hour mess on San Pablo and Beach Boulevard. I'll grab some dinner in the
room while I'm out and come back for a while this evening.
February 9, 2018
Laurel was discharged from the hospital yesterday. She ate some dinner
last night and ate some breakfast this morning. She has three medications --
one of which is for the prevention of seizures (another standard operating
procedure for craniotomy patients). Her other prescriptions (pain and anti-
nausea) are further fortified with Tylenol and Advil.
Her swelling continues to decrease she noted this morning that
the FaceID on her iPhone is working again. She's still got a headache of
course, though it's not as bad as it was.
February 11, 2018
Laurel's swelling is just about gone her jaw and cheek are still
a tiny bit swollen, and she's still got some color in the area of her
temple and right eye.
She had a very active day yeterday. We stepped out of the room for
a while and did a little shopping (she drove a motorized cart), and we
went out for sushi last night. The roll made her stretch her mouth a
bit, and her jaw is sore today (oops). We also stayed up late last
night watching the olympics.
Also, she didn't nap yesterday. She finds she's a touch tired today.
Chick-Fil-A's sriracha sauce is not my friend.
February 12, 2018
Last night we went to another spectacular seafood restaurant.
Marker 32 served a Mahi Hoppin' John with a beautiful basily
flavor that sent me into orbit. The black-eyed peas and rice were
a bit heavy - almost mealy - and weighed down the dish enough that
I could only eat half. The basil was the perfect introduction for
the marinara atop the fish. It was crazy good.
A neighboring table remarked that Marker 32 is known to be second
only to Safe Harbor Seafood for the quality of their seafood and
that's because Safe Harbor actually fishes for the food they serve.
Looks like we've covered all the bases here!
More importantly, Laurel looked beautiful at dinner. She's got
her curly hair arranged around a bandana, and any remaining swelling
is imperceptable without careful study.
She completes her anti-seizure medication tonight (she never had
a seizure), and she'll have her staples removed on Thursday. At one
point yesterday she logged into her work computer and spent some
time catching up with one of her peers. I slipped out for a sorely
needed shave... two weeks away from my clippers did me no favors.
We had a little down-time yesterday afternoon, laying on the bed and
watching women's olympic ice hockey (USA beat Finland).
So far today, she's playing on her XBOX. I interpret this as a
huge step, because gaming tends to create elevated mental activity.
I admit I'm curious to see how long she'll play and how she'll feel
when she stops.
February 14, 2018
Laurel continues to improve, though I have noticed she's got
some bruising on her throat now, probably from her intubation during
the procedure.
Her use of the medication has been declining. We talked about it
a bit, and I learned that she's moving away from prophylactic use
and toward management-as-needed. I've been meticulously logging her
consumption of both the pain and nausea meds as well as her
supplementary OTC meds, and all have been in decline over the past
two days. She was typically using one of the OTC's at about 90 minutes
after her prescription meds; those times have been slipping to two
hours and beyond. She's actually run out of the nausea med, but she's
getting it refilled.
Last night we had another new dining experience: TacoLu is located
just over the bridge toward Jacksonville Beach. They're a casual, Day
of the Dead-themed taco joint and bar. Their "$10 Taco" is made with
Filet Mignon, but it doesn't hold a candle to The Carne Royale.
Today, Laurel is out getting some "face time" with a beautician
while I hang back in the hotel room to have an interview with a
prospective employer my second in two days!
February 16, 2018
Laurel got her staples out yesterday afternoon.
Afterward, we went out to celebrate. Dinner was at Pusser's Bar and
Grille at Ponta Vedra Beach. I couldn't have been more excited about
this during my service to our country I was lucky enough to
participate in the time-honored British naval tradition of splicing the mainbrace. The restaurant
even had a rum tub under glass:
Today was our big day for heading out to the beach. And the weather didn't disappoint.
We're finally coming home tomorrow. We spent this evening in the room having Chinese
take-out, doing laundry and packing our bags. We can't wait to rejoin the rest of our
family!
February 17, 2018: Home Again
After a long day of travel, we made it back home at about 10 PM. The longest part was
about four hours on the aircraft taking us from Dulles: Bad weather was moving in, and
we sat in the plane for about an hour and a half before we went anywhere. But we did okay,
and got home safe.
We were welcomed home with a small banner hanging in our bedroom and another by the
back door both painted by kiddo. When I got in the door she gave me the biggest hug
ever and wouldn't let me go. I won't soon forget it.
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