Long version: (for the short version, just scroll to the bottom and save yourself probably twenty minutes of reading time.)
So much has happened in the
last 3 weeks for me to share with you. God is so good and so faithful- I am
tense and tired in my body at this moment, but in my heart, I am feeling calm
and grateful, and perhaps a little insulated from the reality of what is to
come.
As I alluded to in my last
update, Virginia has had several really awful days and nights since her first
neurosurgeon appointment on the 27th September, interspersed with really good
days and nights. At one point, on 1 October, we were concerned that she might
have had a petit mal seizure. That incident has thankfully not been repeated,
and we hope not to experience it again. Waiting to hear from medical
professionals before taking the next step is quite relaxing (feeling like
"nothing needs to be done right now, no pressure for me to make the right
decision today") when she is having a good day. Waiting to hear from
medical professionals is excruciating when she is having a bad day or night.
My dear friend Michelle, the
midwife for whom I teach childbirth education, shared my last email with her
children, who know Virginia, and they were so concerned for her- they wanted to
hold a bake sale and to give the proceeds from their contributions to the
family's garage sale, to help pay for Virginia's medical expenses.
Isn't that the sweetest thing
you ever heard? Michelle told them she would match whatever they earned, and
they earned $62!!! (Your children are a credit to you, and mirror your
generous, can-do spirit, Michelle.) My friend Ginger helped me make a flyer for
them to use, explaining what the proceeds were going toward. Thank you, Ginger!
We are so blessed and loved by so many friends, and thank God for all of you.
After waiting what felt like a
reasonable period of time, which means after
I composed the description of
the incidences I wanted added to her chart, faxed them in, and continued to
wait. Again it became fairly effortless to wait, because Kurt came home with a
stomach virus, which he generously shared with Virginia, then Isaac, then
Vanessa.
After four days of cleaning up
random bouts of diarrhea and vomit, and all the associated laundry, I was
struck by how easy it was to deal with a mere stomach virus compared to dealing
with
That week, I also went and had
a brain MRI myself due to chronic migraines, just to make sure that they were
only migraines- they are- I've never been so glad to hear that I have
migraines, because at least it's not Chiari! I started Vanessa's third grade
Aspiring Writers' club after school that Monday (with her missing the first
meeting due to the infamous virus) and worked on coordinating the first big
Scholastic Book drive for Isaac's school. My in-laws' 50th wedding anniversary
party was coming up that weekend and I worked on finishing the arrangements for
the cake and the trip with which we were surprising them, and organized my
mother's Scholastic book order. So, fortunately for Dr. Sacco's office, I was
occupied with the output from the family's tummy virus and other family matters
for several days and couldn't hassle them for a bit. Since those
were not bad Chiari days for
On the 7th of October, Nasia
called and said we were scheduled for an MRI and appointment with Dr. Sacco- on
the 30th of November. (WHAT?! 9 weeks after it was ordered? Um... how can I say
this diplomatically? NO!) The office was closed by the time I got the message,
so the next day after I finished volunteering at Isaac's school, I came home and
called Nasia. She said something about she was expecting me to call, and Kurt
and I had to laugh about that comment later. I remarked to him that what she
was really saying was, "We've flagged Virginia's chart with a fluorescent
sticker usually reserved for drug allergies- this one says “Has Toxic
Mother-Pain in the Neck” who
arrives at appointments with three pages of questions, sits on the floor
instead of a chair, takes three times the normal appointment time, questions
why we do everything the way we do it, and calls every day thereafter as though
her child were our only patient". For someone who generally dislikes and
seeks to avoid dealing with conflict as much as I do, advocating for
I let Nasia know that we
needed to explore other options besides waiting until the 30 November for an
MRI. She said that was the first available appointment at Children's. I called
my helpful contact
So, I called my (typically
unhelpful and clueless) insurance company and acquired about ten "covered
radiology contact numbers in my area", and got on the phone. After calling
all ten of them, none of which were equipped to do a sedated 19 month old
spinal MRI, someone said if it were her child, she would go to
Then I spoke with the
Radiology scheduling person at
After going to collect Isaac
at preschool, I arrived home to discover that it was
When I hadn't heard anything
by the following Wednesday, I was planning to call the office again to follow
up, but was sidetracked by my purse being stolen from my car while I did
volunteer work at Isaac's school. The rest of the day was taken up with
attempting to protect us from identity theft, canceling things, etc. The
thieves managed to use my credit card only twice before I got it cancelled. I'm
still waiting on the police report. Anyway, it wasn't how I'd planned to spend
the day, but there you go. Somewhat like the tummy virus the previous week, I
was bummed but well aware that this is not a tragedy or even a big deal, in the
grand scheme of things, though in years past I might have considered it so. You
just mope a bit over the violation and the losses, and move on.
Thursday the 14th, I got the
long-awaited call from Nasia- we were scheduled for the spinal MRI *and* an
appointment with Dr. Sacco, the following Thursday- the 21st of
October (instead of 30 November!). Wonderful news! My sister agreed to take off
work to accompany me, after I asked Kurt and he didn't think it would be easy
to arrange for him to come. Just having the date set was a tremendous relief
and weight off my shoulders. Kurt and I went on a rare date on Friday night-
dinner and a mindless escapism movie, Taxi- we laughed our heads off, partially
at the silly movie and partially from relief that things were moving forward at
a reasonable speed.
Sunday morning the 16th, we were
getting the kids ready for church, when suddenly I just stopped to go look at
the calendar. I can’t explain it, but I just had this urge to go check my
calendar for the dates 8-9 of November. It occurred to me that if we did the
surgery then,
We arrived at FUMC early for
Sunday School, in time not to miss the announcements- very unusual for us, and
we were quite surprised to have found ourselves there on time without any special
effort. I cannot do justice to our shock when John Smart made his announcement
at that time- that the class had collected a substantial sum of money to help
with Virginia's medical bills so that we would not feel we needed to make a
medical decision based on finances. While I assure you that we would not have
ultimately made a decision based primarily on finances, the Becomers were
making it possible for us to consider having the surgery here, even out of
network, without the fear of what that would mean to our family. I was almost
speechless, which was unprecedented. Kurt was completely speechless, which is
quite normal in front of a large group of people- but he later wrote a
heartfelt thank you note to the class, which IS unprecedented, since usually
all correspondence is mine to do. And I couldn't have said it better than he
did, either. Thank you all for your affirmation of love and support of us, and
for your incredible generosity, Becomers class.
(Will Tharp later remarked to
me, "Did you really think, in your time of need, that our class wouldn't
assist you?" To which I answered, "Of course I thought the Becomers
would help us in our time of need- I assumed y'all would bring food when
Virginia and I are at the hospital, maybe help with the schlepping of kids to
their activities, things like that- which *would* be a tremendous help in our
time of need. Maybe even come visit at the hospital if we do the surgery here.
But collecting that much money?!?!??!!? Um... no, that did not occur to
me.")
During church that morning,
Kurt passed me a note: "Do you think perhaps God is leading us towards Dr.
Sacco?"
I answered, "Maybe- I'm
still praying about it. Part of the reason I wanted Delayna (or you) to go with
me on Thursday is so that the appointment can be bathed in prayer, and there
can be other ears along with mine also listening with discernment to what is
said. This morning it occurred to me, when I looked at the calendar, that Dr.
Sacco might say that we could do surgery on the 8-9 November, which was a
startling thought to me. If he suggests that date when we are there, I will be
having chills, you know? So that's what I think... do YOU feel God directing us
more towards Dr. Sacco?"
And Kurt answered, "It
seems that obstacles to choosing him keep being removed", with which I
agreed.
Tuesday, another obstacle
evaporated when Dr. Lilly, the director of Isaac's preschool, offered us the
use of the before and after school care for Isaac, as long as we needed during
Virginia's surgery and recovery, free of charge. Another blessing, and worry
taken away! Thank you, Dr. Lilly! (Isaac *loves* Ms. Robinson and Senor Mendez,
who provide these services, which is an added bonus.) Since Vanessa attends the
same school where my sister teaches and my sister lives across the street from
us, providing for Vanessa’s care will not be a problem either.
On Wednesday, Kurt said that
he was going to be able to come with me to the appointment with Dr. Sacco after
all, just not the MRI appointment, and that was really a relief. It is no small
thing to make a judgment call about whom to allow to do brain surgery on your
toddler, and I really appreciated not having to bear that burden alone,
although I do, of course, appreciate Kurt's confidence in my ability to do so.
Yesterday morning, Thursday
the 21st, after getting Vanessa off to school, I got Isaac and Virginia ready.
We arrived just on time and
spent about 30 minutes in a general day surgery intake area.
In Pre-Op, Jackie showed us to
a wonderful Child Life room- we were the only ones in there for quite awhile,
and that was great, given how shy
Nane remarked, "Awww,
Ginia- you have twins... <pause> well, fraternal twins..." So
precious...
After she played with the
babies for a while, we played with the balls, and read books- eventually she
even warmed up a little to one of the Child Life volunteers, in the book
center. This time in the Child Life room was definitely the best part of
While we were in there, I got
a call on my cell and was able to qualify for a research study for TGI Friday's
next week, which was nice. That means Kurt and I can look forward to having a
gift certificate to go out to eat with, when all this is over with!
At
Dr. Davis told us that it
would take at least just over an hour, and up to just over two hours, for the
MRI, depending on if they found anything that they needed to take a closer look
at, but that we should go have lunch and come back in an hour. We left at
We got on the wrong elevators
and went to the right floor but in the wrong building, so we weren't where we
needed to be, which was confusing, but we found our way back, along with some
other people who were in the right building but on the wrong floor. How on
earth do people design hospitals?! No rhyme or reason that I can tell. The
hospital designers must have very chaotic minds to come up with such floor
plans. Anyway...
We arrived back just as they
were bringing
I was able to pick her up and
hold her and nurse her at that point, and Margaret went over the orders for
caring for her as she recovered from the anesthesia. It was really wonderful
how alert
By
Of course, this was not a
surprise, but there was always the remote possibility that there could have
been a miracle in the last month! However, I didn't see anything on the MRI
that looked to ME like a syrinx, which was good. On the other hand, I had only
ever seen one syrinx on an MRI before, so I couldn't feel particularly
confident until I heard Dr. Sacco say it. I told my sister that I had just
become fully aware that I didn't know how to recognize much of anything else on
an MRI except a Chiari Malformation, so we may as well go on in!
We made our way across several
sky-bridges and elevators to the main building, and sat down to wait for Kurt.
He had some difficulty finding us (again, who designs hospital layouts?), but
eventually we were all together and on the third floor (more and more elevator
buttons to push- the second best part of Virginia's day) to check in. We were
to be there at
At some point- I didn't notice
what time, if you can imagine that, how neglectful of me- Dr. Sacco came out
and ushered us in to his office. I tried to put him at ease by sitting on his
neat-o furniture, but really I didn't last a minute before I was peering at the
MRI up close and then seated on the floor. (He noted that I took my usual seat,
and appeared unsurprised to see my ubiquitous pen and green folder come out.)
We were delighted to hear and see, with his explanations to go with the MRI
films, that there indeed was no spinal cord damage and no scoliosis. After
viewing Virginia’s films, we saw a sample MRI with a syrinx so we could know
what one looked like, and then a sample MRI with scoliosis to be able to
recognize that, and then we looked at examples of “before and after” MRI images
of a child who had Chiari surgery done around the same age as Virginia.
After viewing the various MRI
images, I opened my green folder of questions- handwritten this time, because I
had not been home enough to do them in the computer and instead had compiled
the list when I was out and about, adding to it as I thought of things. When
Dr. Sacco saw my (very crude) handwritten list, he asked what the color-coding
was... ha ha! That question gave me entirely too much credit- the different
colors only indicated whichever pen I had available at the time I thought of
the question! But it reminded me of times past when I've been pregnant and
presented my care providers with my fertility chart indicating precisely when
conception occurred, those charts ARE in full color. I should have typed my
notes as per my usual custom, I could have kept my reputation of being well
prepared for appointments intact. Oh, well.
Delayna expertly entertained
As a childbirth educator, I
know how tricky using visual aids can be and yet how vital they are in making
clear what you have been explaining with words or flat charts. I was reminded
of the impact and power of explaining complicated matters using models as Dr.
Sacco showed us models of the skull and the spine, and which parts would be
removed, in addition to having already shown us the flat MRI films. Nothing
takes the place of a 3-D model. Without having the benefit of the model to show
you, I will try to describe the information we gained from the visual. Those of
you with more background in anatomy than I have, can feel free to correct me if
I am wrong in any detail, which I am sure you would have anyway. That’s okay
with me. I strive to remain always teachable. <wink>
C1 is connected to C2 and the
juncture of the two affects the mobility of turning one’s head side to side.
The vertebrae is roughly an oval shape, and the juncture connecting C1 and C2
is located on one of the “long” sides of the oval, the side towards the back of
the neck, where you can feel the ridge with your hand. The part of C1 that is
removed is a section on the other “long” side of the oval, the side interior to
the neck, where you cannot feel with your hand. Similarly, the segment of skull
to be removed is interior to the head as well, not an area that can be felt on
the outside. Because both areas where bone will be removed to allow more room
for the CSF flow are interior, normal living should not be impacted with regard
to stability. Avoiding head trauma is the main care needed long- term after the
immediate post-operative care with this surgery. Having taken a solid ring of
vertebrae and basically removed part of it to make it more of a “C” shape than
an oval, does cause it to be less sturdy in the event of trauma although stable
for normal living.
Given
We also discussed with Dr.
Sacco the pros and cons of using a synthetic material (Alloderm) for the graft
in the dura (again, to create more space for the CSF flow), versus using her
own tissue for the graft. His willingness to discuss the risks and benefits of
each method, and his offer to use whichever we prefer if it is an issue of
importance to us, was extremely reassuring and a telling example of why we have
confidence in him and our ability to work with him. I have not had the
opportunity to research the issue and discuss it with Kurt to determine what
our opinion is yet, but Dr. Sacco’s attitude towards explaining and allowing us
to be involved in making decisions about Virginia’s care, and being willing to
respect what we are comfortable with, even when he is clearly the expert and we
are clearly not, is endearing.
All was feeling very positive
to each of us so far with this session. But I had to ask- why hadn't I ever
“received my copy of the notes from the last visit, even when I had offered you
my <brandishing it again> self-addressed stamped envelope?” I was
concerned that if it takes this long to get transcription done, then who knows
how long it would take to get the information sent off for a second opinion,
who knows how long it would then take to get a surgery date, etc. That original
suggestion of the 30th of November for the spinal MRI, coupled with not having
received my copy of the appointment notes, had made me a little worried.
Although my shaken confidence had been largely restored by Dr. Sacco’s phone
call a couple of weeks prior and how our appointment was proceeding at that
moment, I was still further reassured by what happened next.
Dr. Sacco tracked down the
problem- apparently an entire day's dictation had not gone out for
transcription, or had gone out and not come back, it was not clear which, and
that day included ours. However, he opened the dictation file manager on the
computer, found the entries for the date of our first appointment, and
remarked, “Here is the dictation that is over 8 minutes long, that has to be
yours!” (The others were around 2 minutes apiece. Apparently, I am even
long-winded when I am not the one doing the writing!) At once he began playing
it for us- and after listening to a minute or so of the dictation, it was
clearly evident that he had indeed gotten all the instructions just as I
wanted- from sending me a copy, sending out the chart for a second opinion,
etc. Dr. Sacco even offered for us to sit and hear the entire 8 minutes, if I
needed to do that for my peace of mind. (Although he may have thought I was
half cracked for that need. However, he hasn’t had my previous experiences with
Medical Records, so I am quite unapologetic for my insistence.)
Taking all eight minutes of
his time to listen to the full dictation was then not necessary- I had heard
enough to feel confident both that my original assessment of his reliability
had been accurate, and that I would be getting the notes as soon as they come
back from the transcriber. One of Dr. Sacco's assistants, whose name I did not
catch but who was quite engaging and very friendly, assured me it would be back
ASAP now that we had found the problem. While Dr. Sacco had stepped out of the
room to solve “the mystery of the missing transcription” problem, Kurt
indicated that he liked Dr. Sacco, and felt like we were getting information he
could feel good about and could trust.
At this point, Dr. Sacco
returned and assured us that how long it had taken for the transcription on
this one isolated strange incident was not indicative of how long it would take
for the records to be sent out for the second opinion nor was it suggestive of
how long it would take to get surgery scheduled if we desired to make that
decision at this time. Kurt asked if we could go ahead and get a date now, with
the understanding that in the unlikely even that Dr. Scott were to say
something radically different, then we would be postponing surgery while we got
yet another opinion, but assuming that Dr. Scott's opinion was roughly the
same, we would have secured a date rather than waiting even longer. We had
decided to look for our second opinion from Dr. Scott, the neurosurgeon in
One of the other neurosurgeons
in the practice called Dr. Sacco while we were in our appointment, and
listening to the end of the conversation that we could hear was fascinating. I
found that I could follow quite a bit of it, which was interesting, given that
3 months ago I knew absolutely nothing about pediatric neurosurgery, not even
the rudiments from a layman’s point of view. As I listened to Dr. Sacco going
over cases, I discovered that I had at least heard of and had a fairly good
idea of what most every diagnosis he mentioned involved, and had spoken with a
parent or two who were dealing with just about all of them. (Before you ask,
let me answer. NO, this does not give me the least interest in going into
medicine. I am increasingly profoundly grateful for those who feel this call,
but I do not, and look forward to when I will no longer need to remember much
about conditions requiring brain surgery.)
All our questions answered,
Kurt, Nane and Virginia went to the waiting room, and I followed Dr. Sacco over
to his assistant’s desk and had the opportunity to meet Nasia in person. She is
as warm and gentle in person as she is on the phone. That's a good thing, since
I suppose I will be working with her a lot for the next couple of months! Dr.
Sacco showed her the MRI films and the other information to be sent to Dr.
Scott ASAP "so she <indicating me> can make sure that I'm not
crazy" (I assured Dr. Sacco, that if I thought he were crazy, I wouldn't
be setting up surgery dates). Then he asked her to pull up what dates were
available for surgery. She asked, how about pre-op on the 8th and surgery on
the 9th of November? <Twilight Zone musical interlude>
(You should have seen Kurt's
face when I told him that, a few minutes later in the waiting room... it
solidified the overall positive impression we had from the day’s events and the
peace we felt regarding our next step. Really, an answer couldn’t have been
much clearer.)
We arrived home to find that
Isaac and Vanessa had had a wonderful time with my friend Debbie who had picked
them up from school for me, and that my mother had thoughtfully arrived at our
home to make us dinner and get the update. Thank you so much, Mom and Debbie.
All my prayers were answered
today. I prayed that
Now we will prepare for what's
ahead, and hope that in the coming year, all of this will be behind us. Please
continue to pray:
*For Virginia's comfort (more
good days and few or no bad days leading up to the surgery) and healing during
and after the surgery- specifically for no infection from being in the germy
hospital, no spinal fluid leaks or reaction to the graft or any other
complication, and that the surgery will be successful in eliminating her
Chiari- or at least eliminating all of her symptoms,
*For the wisdom, discernment,
and skill of Dr. Sacco and his team as they work on
*For guidance, direction and
strength for Kurt and me, and that our needs will continue to be provided for
as miraculously as they already have been, and our willingness to accept
whatever way He chooses to do so, and finally,
*That we will continually open
ourselves to the work of the Holy Spirit that God might draw us near to Him
through this trial, bring ultimate good from this situation, and use the entire
experience to His glory.
Short version:
I am thankful to report
Love,
Delilah
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