Monday 10/28/19 Natalie Update:
Two weeks ago Natalie and I went to UNC for x-rays to check
the progress of her halo traction therapy. There were minor corrections in her
curvature but nothing that made her doctors super excited. Since there was such little
progress they decided to give it two weeks
before checking again to see if more stretching would occur during that time. So we
waited the two weeks and we were able to have a week at home without having to
ride back to the hospital or go to football practice (which was nice). It was
pretty clear that Natalie’s lengthening progress was slowing down a bit so we decided that both Joanna and I should be at this appointment this past week in case her doctors wanted to discuss further plans or adjustments. So we checked
the kids out of school, hit the road to Chapel Hill, and made an afternoon out
of it.
As always, we rolled into the Ambulatory building parking lot looking like the Beverly Hillbillies with our trailer full of medical equipment, did the usual rigmarole with the x-ray teachs, and waited around for
a report. Quickly, Dr. Stone came in and explained that
in his opinion the halo was no longer working and that we needed to proceed
with another surgery on November 5th (yes, next Tuesday). He had already decided and had it scheduled. He proposed
that Natalie needs a permanent posterior thoracic/lumbar osteotomy and fusion.
There is a longer official name for the procedure but essentially it is;
going into the back of her spine and manipulating some of her bones around (via
osteotomy), straightening things up as much as possible and permanently attaching
her thoracic spine and part of her lumbar spine in place (fusion). The
way her back and body functions after this surgery is the way it will be
forever. After this procedure is done there would be no more operations for Natalie. Literally the last one for her back at least. As we supposed, Dr. Stone couldn’t give us a clear idea of how much
correction could be made during this procedure but rather he gave us an honest
but disheartening answer of “it won’t be worse”. He went over why he thought
this was the best next step and he told us that there were “no other options”
that would be appropriate. He rightly communicated that without a solution she
would eventually “expire” from cardio-pulmonary dysfunction over time. He
said growth rods or any other distraction-based options wouldn’t be a good idea
because she was too small and that they wouldn’t ultimately work due to her
Arthrogrypotic posturing (meaning her bone/joint stiffness, curvature, and
positioning...we can discuss this another day). He said that there were other techniques out there like tethering (VBT) but the
colleagues he has advising him on Natalie would not recommend any of these techniques at
this time.
So, needless to say, we were devastated. Once again, we have
another situation where her team is saying, “we’re out of options”. This
procedure would be significantly impactful to Natalie’s overall growth and
well-being for the rest of her life. Because of the thoracic fusion a portion
of her torso would inevitably be stunted. The overall impact of this stunting is
yet to be seen. She could possibly keep her current trunk rotation since most
torso rotation comes from the cervical and lumbar region of the spine but that rotation could also be stunted. Also, most likely she would
still have a significant curvature of scoliosis and kyphosis and her mobility
would be limited similar to what it already was pre-halo. I asked hypothetically
if technology advances would this surgery have the potential of reversal if a
newer procedure were invented? The answer was “no”. So it’s truly permanent. Dr.
Stone was 100% behind us on looking for as many second opinions as we needed
which gives us confidence in him all the more. I think that’s what all doctors
should recommend. At first we agreed with him that this next procedure was inevitable
and since we weren’t medical experts we would take his opinion and get the surgery on the books. So we signed the waivers, got the surgery soap, and we got it on the schedule. But we didn’t feel right
about it. We talked all the way home and then just sat in shock, silence, and exhaustion for
a few days. We just felt that we weren’t ready to give up hope just yet.
At the end of the day Joanna and I are both realists when it
comes to life and Natalie. But, we both have a pretty large dose of idealism in our DNA. We like to dream. We know this permanent surgery will more than likely be the only option
for Natalie and we can live with that BUT, what we can’t live with is not
seeking out people to dream with us for a while. We need to make sure there isn’t
something else out there. So we’re starting over for a season. We’re seeking
out doctors to look at Natalie holistically and make recommendations based on
several aspects of her livelihood and not just survival. We want people to take
into account the impact of a preadolescent fusion and how a permanent solution
on an 8 year old might be too hasty. We know that the option given by UNC will
Lord willingly keep her alive BUT we hope for more than mere survival. We are
hoping to find a doctor that can help allow her to grow as much as she can and to
physically become the young woman that she was always meant to be. We want her
to look back on her childhood and know that we fought well for her. If her
mobility is limited then so be it. If she can’t run like other kids then we
accept that reality. We want Our Natalie to be exactly who she is meant to be. As
we decide on her next step I look back on all the times doctors have told us
that there were “no other options”. Most of those times, they were wrong.
Before birth we were told that the only options for Natalie after birth were
pretty dire…they were wrong. While in the NICU they said she’d only be able to
eat from a feeding tube…they were wrong. They told us that she might not walk…they
were wrong. They told us a growth rod was the only option for her back…they
were wrong. They told us she’d only thrive in a separated classroom for intellectually
disabled children…they were wrong. Just last year we were told that Natalie
would never get a High School Diploma and I can’t wait for her to prove them
wrong. Dr. Stone is probably right about this final surgery but I have to hold
onto a glimmer of hope that he might be wrong. Once we explore as much as we
can then we’ll be reasonable and do what needs to be done. But until then, we’re
gonna keep dreaming.
So we’re currently scheduling visits this week. We talked
with the Paley Institute in West Palm Beach, Florida today and they specialize
in cases like Natalie. The Paley Institute is not covered by her insurance but they
will allow us to self pay for the initial visit to see if other options are out
there. We have no idea what timeframe as to when they’ll be able to see her but we hope it will be sooner than later.
We’ve also scheduled an appointment with the Shriners' Hospitals who work with experienced
ortho specialists that can weigh in. We met an amazingly kind man here in town while
eating at “Harry’s Place” that got the ball rolling for us with the Elkin Shriners. We’re
meeting with him tomorrow afternoon to talk about visit options. After that, we’ll
regroup and see what else is available. We know this next little bit will be
exhausting and to be quite honest we’re already exhausted but, I think in the
end it’ll be worth it. So please keep us in your thoughts and prayers over the
next little bit. We’re heading into uncharted territory so any reasonable tips or guidance in these areas will
be so greatly appreciated. We’ll get there eventually.
Thanks again for all
your kindness through this process.
