I can’t say that I always love the drive out to Houston. It’s a long,
monochromatic trip, with very little redeeming scenery, which usually ends in
bumper-to-bumper traffic. Whatever feelings of anxiety or frustration I was
experiencing beforehand are typically magnified as we zero in on the medical
center. However, during the early Spring, the drive to Houston takes on a
different hue. There are a number of things
I’ve grown to really love about Texas. The food is fantastic. I could eat
breakfast tacos every single solitary day and never achieve boredom. There are
plenty of interesting cultural landmarks and traditions, and we have met some
truly lovely people. Above all of these things, what I will forever cherish most
about Texas are the wildflowers. With the exception of bluebonnets, I’m not confident
that I could even tell you what any of them are, but the splashes of purples,
oranges, pinks, and yellows along the highway at this time of year have an
ability to undo the dread that I generally feel building as we make our way
along I-10. For whatever reason, the
color helps me breathe. The variegated backdrop helps remind me that it might
be ok – because if this kind of wild beauty can pop up along the unsightly
roadway, then maybe, just maybe, Aberdeen can make it through whatever she’s
about to endure with the same sort of grace.
I don’t know that it’s particularly logical, to attribute such symbolic
weight to a collection of weeds that are destined to spring forth whether or
not we’re there to appreciate them, but I am nevertheless thankful for their
ability to draw me out of the darker recesses of my mind and bring me a sense
of peace these past two Springs.
 |
| (not my picture, but an accurate representation of what we see on our trips) |
___________________________________
I wanted to take a (rather lengthy) minute to reflect upon
the last month. There are lots of
details that I haven’t put to paper yet because of the difficulties associated
with writing on my phone, and I don’t want to forget these tidbits in the
months to come.
It has been a while since Jameson and I have truly felt out
of our element with this whole medical parenting thing, but the events of the
last few weeks have certainly put us to the test. We spent more time in operating waiting rooms
than we have since Aberdeen was about three months old, were introduced to equipment
we’ve never seen before, much less had to contend with, and we weren’t able to
draw upon any of the cardiac-related knowledge we have been accruing over the
past two years. While the necessity for
an additional skull surgery has always been on the radar, Aberdeen’s heart and
its function has been the primary concern for so long now, that we just weren’t
devoting as much attention to the issue of her head. In addition, because she wasn’t exhibiting
ANY troubling symptoms, we didn’t have a reason for immediate concern. We never
imagined that everything would have to move so quickly once her intracranial
pressure rose to problematic levels. So
much changed regarding our perception of Aberdeen’s cranial status over the
last month, that it has felt like we were playing catch-up. We knew going in that
Aberdeen’s skull would need to be expanded due to multi-suture craniosynostosis,
but knew nothing about the venous anomalies that would affect how that surgery
was performed, or that they would ultimately require that Abby have a shunt
placed. We were only moderately prepared for what February would put us up
against – which just isn’t how we like to do things.
We now know that Aberdeen’s intracranial pressure rose to be
as high as it was because of the dual issues of her skull restricting her brain
growth as well as the fact that her veins and blood vessels weren’t moving
cerebral spinal fluid out of her brain at the rate they should be. When the
team opened her skull for the cranial vault expansion, they were encouraged by
the appearance of her brain tissue and the lack of markers that would suggest
that she’d been dealing with such high pressures for an extended period of
time. Most likely, her pressures had been rising for a number of months, but
slowly enough to not cause obvious damage, and hadn’t been at their peak for
long before they were able to intervene. Though expanding her skull relieved a
good bit of the pressure in her head, it just wasn’t enough in the long run
because of the residual pressure left by her veins not operating effectively. There
isn’t a thorough understanding of just how mildly-increased pressure affects
the brain over time, but the consensus is that it isn’t good. The only option to remedy this in Aberdeen’s
case was to place a VP shunt. The shunt involves a valve and tubing that
originate in Aberdeen’s brain ventricle and ultimately empty down into her
peritoneal cavity (the space around the organs in your abdomen). The valve
helps control the amount of CSF leaving the brain and allows for pressures to
remain at the optimal level. The shunt will be a life-long device for Abby that
may have to revised after a period of time if she starts to exhibit symptoms of
increased ICP (although she didn’t exhibit symptoms this time around, so I
don’t know how we’ll really know if there’s an issue other than catching it at
a routine ophthalmology exam like we did this time).
The device that they were using to monitor her intracranial
pressure prior to shunt placement was called an EVD or extra-ventricular
drain. It was a thin tube (think
IV-sized) that was placed in the brain ventricle, but exited her scalp just
behind the main incision (the entirety of the shunt is subcutaneous, though you can certainly see the outline of it - I'm lovingly referring to it as a dorsal fin at the moment). It was attached
to a contraption set at a certain pressure level, so that any fluid in her
brain that was produced above that level could drain out and be measured. They initially had it set at 15, which would
be considered fairly normal ICP, but she continued to produce too much CSF at
that setting, and then at 20, and then at 25, which is when the decision was
made to place the shunt. The timing of
the shunt placement got pushed up a bit when the EVD, which was sutured in,
rather suddenly became dislodged. This
is not supposed to happen. Our nurses
kept telling us it COULDN’T happen. Now
looking back, this event could be considered a harbinger of things to come, as
the reason it became dislodged was due to the considerable tension that had to
be applied when suturing Abby’s scalp back together after her cranial
expansion. The skin was stretched thinly enough that the EVD sutures tore right
through her skin without any additional force.
When she came out of the OR with the EVD there was a complicated knot at
the base of the tubing, touching her scalp, which a few days later I noticed
had moved up the line at least an inch. Our nurse again assured us that it was
probably fine, since those things can’t come out. But I was extremely concerned
that something was amiss in its placement and proceeded to have a bit of a
hospital room meltdown – not my first, possibly not my last. Thankfully, Abby’s
neurosurgeon just happened to stop by in that moment, identified the problem
(which was that the EVD had, in fact, been pulled out about an inch) and got to
work removing the EVD the rest of the way and suturing up the open site. The
tension of her incision suturing continued to plague us though, for almost as
soon as Aberdeen was discharged from the hospital, we started to have issues
with skin tearing around the sutures.
The complications with Aberdeen’s incision site were an
experience altogether new to us as well.
She has had a fair few incisions in her 2.5 years, but we have never had
any real issues with any of them, and as long as we followed the basic wound
care instructions, everything healed up the way it was supposed to in a fairly
short amount of time. It was clear that
this one was not going to proceed quite so smoothly. There unfortunately wasn’t a way to avoid the
amount of stretching and tension that had to be applied to the scalp in her
case. Because of those venous anomalies,
they couldn’t do an additional surgery later on to expand her skull backwards,
nor was she a good candidate for distractor surgery (an implanted device that
slowly expands the skull and is later removed).
They had limited options to give her brain room to grow, and so it was a
risk they had to take, and weren’t particularly surprised by when the skin
started to tear. Unfortunate, surely, but not unexpected. Thankfully, when we
returned to Houston this week, some of the incision had already healed and
provided a little more slack with which to close the rest of the problematic
areas. Hopefully, for good. It was explained to us this week that Abby’s venous
abnormalities may have also contributed to the delayed healing we have
witnessed with her main incision. The
craniofacial team was not able to utilize the incision from Aberdeen’s cranial
surgery when she was five weeks old for this most recent operation. It was placed too far back to address the
bones around her eyes that they needed access to, so they had to make their new
incision further forward. With the way that her veins developed around that
previous incision, it’s possible that the scar tissue was interrupting some of
the blood flow to the scalp at the new incision. It isn’t clear that this is the case, and is
still most likely simply due to tension issues, but I thought that it was an
interesting piece of information.
Thankfully, Aberdeen’s neurosurgeon seems optimistic that
this is the last cranial expansion Abby will have to go through. She explained that by this age, the brain is
about 85% of its ultimate size. She
feels confident that they made Aberdeen’s skull large enough, that even if her cranial
sutures fuse again (as it appears they are want to do), that there will still
be enough room for her brain to finish growing without issue. They didn’t experience the obstacles that her
previous team did with excessive bleeding or the dura being fused to the skull,
so we will hopefully see fewer post-op complications (the issues last time were
the cause of her seizure activity), and her team also anticipates that she will
eventually grow into her impressive new forehead, while her eyes will continue
to enjoy a level of protection they haven’t previously had. ;)
During all of this madness, I also celebrated my 31st
birthday. My year as a 30-year-old was quite the rollercoaster. It began with
Abby being admitted to the hospital here in San Antonio with a gastrointestinal
virus we could no longer manage at home. I watched as my baby underwent another
open heart surgery, and then skull surgery, and then brain surgery. I got a
tattoo that I love and is meaningful to me. I finally found myself back at my
pre-pregnancy size. Jameson and I celebrated our 9th anniversary, I saw
my baby bird turn 2, and I watched our family strengthen and rely on each other
and thrive. While 30 rivaled 28 for the title of Most Difficult Year, it was also
a year of immense growth. I am grateful that I now have 31 to look forward to,
and that I have the most magnificent people to share it with.
We’re praying that we are finally nearing the end of this
difficult process and that the next few weeks will begin to bring healing,
peace, and a sense of normalcy for our family (our own, totally abnormal
normal, of course). We are incredibly thankful for all of the love and support
we have received from far and wide over the past month. This experience would have been even more
difficult without the prayers, dog/house watching, notes, gifts, cross-country
travels, dinners, and encouragement from all of you. Each of you have been a precious
and beautiful wildflower on this journey, and we offer you a heartfelt: thank
you, thank you, thank you!
