I already
sent out “the short version” this time-
When last I
wrote a long update, I was rejoicing in the clear and specific answers to
prayer we had already received that day:
·
No
bad reaction to the drugs used during the MRI,
·
No
spinal cord damage found on the MRI,
·
Kurt,
my sister and I all had the same reaction to and were of one mind about the
appointment with Dr. Sacco, and
·
The
dates proposed for surgery were the ones I had been compelled to check my
calendar for, several days earlier, out of the blue...
Actually,
the way that entire day unfolded was a strong and peaceful answer to prayer.
When I left off, I was ready to begin researching dural grafts and learn what I
could from the second opinion, so we could move forward. The prayer requests I
left you with were:
·
For
·
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 would be successful in eliminating her Chiari malformation- or at
least successful in 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 would
continue to be provided for as miraculously as they already have been, and for
our willingness to accept whatever way He chooses to do so, and finally,
·
That
we would 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.
So the day
of the MRI and second appointment with Dr. Sacco was a mountaintop experience,
an experience in which I could absolutely sense the powerful presence of God
and perceive His hand upon me, guiding me. But, as often occurs immediately
following such a mountaintop experience, the next day I was assailed by
horrible, disquieting dreams in the night, continuing to build into doubts and
fears during the day. I have come to recognize and even expect this pattern to
occur, and to just bow my head and hold firm until the storm passes, but it is
never a fun process. The dreams included a recurrent nightmare of Dr. Sacco
entering the operating room's waiting area and saying "Mr. and Mrs. Ray,
I'm sorry, but…" and then me waking up in a cold sweat... The fear behind
such a dream was obvious. But other nightmares ranged into the truly
disconcerting and bizarre, such as Dr. Sacco making outrageous blackmail type
demands while Virginia was cut open, that he would not finish the surgery and
close her up until the demands were met, and our crisis at what to do in those
situations- causing me to wake up and think I must have lost my mind entirely-
I think Dr. Sacco is quirky, but not nefarious or evil! The aftermath of those
images cast such a pall over my day. I couldn’t shake the mental images or
emotional impression left by them, even once I was awake!
I realized,
after a long talk with Steph (which robbed the dreams
of much of their power- dark fears and images are always more powerful when
kept private- once shared, it is more possible to refute and release them),
that the dreams were really about control. Giving my permission for someone to
cut into my child, and in such a way, handing over control over my child's life
or death, to a person who I barely know, regardless of his skill set, was
terrifying... I needed to admit that feeling of vulnerability and not try to
ignore it or dismiss it, before I could move on from it.
I was able
to regain my equilibrium after two days of much prayer but little sleep (and
the little I had was not restful, but terrifying). I was partially helped along
in this “accepting surgery” process by Virginia having a not-so-good Chiari
day, where she had bad balance problems off and on all day and threw up a
couple of times with it as well... reminding me again of why we were doing
this!!! She only had two bad days and one bad night in the 2.5 weeks between
decision for incision and the surgery, and that was an answer to prayer, for
sure. Both the bad days came at times when I was wavering and needed the
reminder of what we were hoping to accomplish, what the benefits were that made
us willing to assume the risks. So, note to self: God is good ALL the time, and
brings good from every circumstance- including bad days when your child is
hurting, falling down, and/or throwing up.
After I got
past my "buyer's remorse" over agreeing to surgery, I began
researching dural grafts. A dural graft, remember, is the piece which would be
sewn into the membrane covering Virginia's brain to allow more space for the
cerebrospinal fluid (CSF) to flow, like a belly panel is sewn into maternity
jeans. The question was, what the panel would be made
of.
There are
several main types of dural grafts, some of which are not commonly used, so I
won't mention them (i.e. bovine, collagen, etc.). The three types I researched
were synthetic, AlloDerm (derived from donor tissue),
and auto graft. I had been under the mistaken impression that AlloDerm was synthetic, because I could have sworn that Dr.
Sacco initially said that he did not use cadaver derived graft, but I didn't
write that down, which mistake will teach me a lesson about not writing down
every single word, instead of only most of them!
So, first I
researched synthetic grafts and didn't like what I found... too many instances
of CSF leaks and late hemorrhage, possible rejection or bad reaction, etc.
Yuck! I sent those links to Dr. Sacco and asked why we were considering this
when there were all these problems, and he agreed that indeed we were not
considering the synthetic, because of all those problems, and sent me the
abstract of a study on AlloDerm, so I went back to
the research drawing board.
Calling on my resources (thanks, Tracey-molecular biologist friend, Ellen- medical journal researcher friend and Michelle- healthcare provider friend with access to medical library!), I got the full article Dr. Sacco had sent me the abstract of and read it. Next, I read the company's website that makes the AlloDerm, and then I began reading the research about cadaver derived grafts. I read a lot about prion-transmitted diseases (Mad Cow disease is an example of a prion transmitted disease- meaning not caused by a bacteria or a virus but by a diseased protein) and attempted to make sense of them. It was hard for me to determine from what I read, whether the process that rendered the donor (cadaver) graft material acellular would prevent prion transmission the way it would prevent bacterial or viral diseases, which infect cells. I read studies about the problems with autologous grafts (grafts using a piece of the person's own tissue) and incidences of complications from that. I read the paper that Dr. Sacco and Dr. Scott had written about patients who needed a revision (more than one Chiari surgery) and what factors seemed to have an impact on whether a single surgery would do the trick.
I essentially did not think about anything except such matters for about a week. Even when I was working at the kids' schools, going about my errands, running my household, paying bills or at Bible study, I mainly was pondering what I was learning and assimilating what I already know about the human body and medical science.
I have a lot of respect for scientific knowledge, but my worldview is that God is the one with the owner’s manual, the One Who designed it all… and that as we make our “discoveries” and figure out how things work together, our understanding is still imperfect. I sense that God is looking down at us with the same sort of pride that I feel when my four year old son figures out something and explains it to me with his enthusiasm in his new discovery… I already knew it, but it is new to him, and I love to hear him explain to me what he has learned, and hear the perspective he has on it. Even when it is not 100% accurate, I am still pleased that he is investigating and analyzing and trying, and I enjoy his “take” on things. But it isn’t as though he told me anything I didn’t already know! This is the relationship between God and science, to me. Even the most brilliant, innovative scientist/doctor/inventor is still “discovering,” with varying degrees/layers of accuracy, what God has intentionally designed, created, and knows. Certainly I do not know nearly as much as a scientist does, and I am aware of that lack, and I respect the greater knowledge of others. But I ONLY respect it- I do not worship science, nor do I put my full trust in it, because I am well aware of its limitations. So after researching what research studies and scientists and doctors had to say about grafts, I began praying over the issue. I had not come to any definite conclusions other than a certainty that I needed to step back from it for a couple of days and wait for an answer to be made clear to me.
Fortunately,
it was the Friday of Halloween weekend and I was taking the children to
Lori needed
a break too, because she had just returned from her bio father's bedside out of
state where he is on hospice from pancreatic cancer, to the news that her
mother's breast cancer is back and there seems to be a spot on her lung now as
well. I hope I was as good a distraction and joy to Lori that weekend as she
was to me. We loved seeing Grandma as well, and she even brought my children
trick-or-treat bags along with the ones for her own grandkids. Vanessa and
Isaac played with Miranda and Marcella without a harsh word all weekend long,
and
We went
trick-or-treating down their small town's main street,
Sunday, it
was raining as we packed up for home. I drove through heavy rain with little
visibility for a couple of hours and narrowly missed having a car accident with
an 18 wheeler on the turnpike, simply from not being able to see that it was
there, but by the grace of God, we arrived home safely. The rain in Dallas even
held off until after my children trick-or-treated through the neighborhood,
walking over a mile and collecting more candy than they will ever be allowed to
eat (including some chocolate this time, thank goodness!). It was a wonderful
“friends and family” weekend and I cherished it, storing up memories and taking
photos.
Monday, I
was re-energized and ready to take the next step. I reviewed all I had learned
from my research and identified what I still did not adequately understand,
prepared my questions for the second opinion appointment with Dr. Scott,
followed up with his staff that they had received our check, Virginia's files
and the clinical notes from Dr. Sacco’s office (my copy of which, incidentally,
showed up that day- over a month after I expected it, but I did finally get
it!), got us pre-certified for the surgery with insurance and with the hospital,
took care of birthday wishes for my five friends who had birthdays the first
week of November, led Vanessa's school Writers' Club, prepared food for Isaac's
school's Election Day bake sale, contacted one of my December clients, took
Virginia to Musikgarten, paid bills, went to the bank and post office and took
photos to be developed, did the laundry, dishes and made dinner, went to Monday
night Bible study, etc.
As I went
about my normal routine on autopilot, in my heart, I was struck by the conviction
of what God wanted of me. I was brought to mind of the story of Abraham and
Isaac- Isaac, the child of Sarah and Abraham's old age, brought forth from her
barrenness and to be his legacy, their son through whom God promised to bless
the nations. Then Abraham was asked to return Isaac to God- and his full trust
that God would be faithful to fulfill that promise even if it seemed
incomprehensible and impossible if he obeyed God, and Abraham’s willingness to
obey even to that point, was accounted to him as righteousness. And God
provided, and saved Isaac from the knife and fulfilled His purposes through
him, as He had promised.
I named my
son Isaac because of this story. A friend named Tamar had led a group that I
was a member of long ago in a discussion of the meaning of the story, years
before I conceived Isaac, and it moved me to the point of deciding to name my
child Isaac if I ever had a son. Isaac brings me joy and laughter, as his name
suggests, every day. But it was now, with
I know
without question that our having Virginia was not our idea, or our petition
granted by God (as Vanessa and Isaac were- gracious gifts and answered prayers,
both of them), but rather His plan for our good even when we had no idea of
what was best for us, and the control didn't belong to us. I know that she belongs
entirely to Him and it is His purpose that she exists. But now I was to submit
her to the knife, and submit myself to the outcome that God chose.
People
tried to assure me that as we prayed for her and they prayed for her and so
many people prayed for her, and Dr. Sacco was skilled and we had been led to
him and to this point by the Lord's guidance, that this guaranteed us a
"good outcome", but that was not the message I felt from the Spirit.
Not that I anticipated a bad outcome- I had no reason to feel doomed or
negative about her prognosis, or I would have been a complete wreck! But the
point was, I was to let go of the outcome and be
willing to accept whatever God had for us, and trust Him completely, without
regard for the outcome and accept the lack of a “guarantee”. I had that message
very clearly, and understood what was asked of me, but it was hard to “get
there” in spirit and in truth. I asked for prayer in moving toward this from my
Disciple group.
Don’t
misunderstand me- I certainly never stopped praying that the outcome would be
that my child would be returned to me from the knife as Isaac was to Abraham.
But to truly submit my will to God’s would be to relinquish the idea that there
was some action or bribe or control that I had, that guaranteed me what I
wanted to happen… “If only we pray enough” or “if only enough people pray with
us”, or “if only we choose the right doctor or the right procedure”, or “if
only the planets are in alignment or you don’t cross the path of a black cat”,
or whatever illusion of control we try and trust for a guarantee that the
future will hold what we want it to hold. What God was asking me was to have
faith that He had led me to where He wanted me to be, and to trust Him in any
outcome without doubting Him. I certainly wanted to do what was within my power
to place
Tuesday, I
played phone tag with Dr. Scott some more but we never did get the opportunity
to have our phone conference. Wednesday, I determined not to miss him, choosing
never to leave the house again after taking Isaac to preschool and running the
morning errands.
Michelle
stopped by and brought the money her children had collected for
That
afternoon, Dr. Scott and I finally connected over the phone. I think Dr. Sacco had probably
"briefed" Dr. Scott on my tendencies- because as soon as we
introduced ourselves, he said something like, "So what questions do you
have for me today?" rather than starting out remarking anything about
Virginia's records or such. However, later in the conversation he mentioned her
CSF blockage and he clearly had read the chart, even though he didn't start out
on that point.
The main
issue I wanted to discuss was the dural graft material, so we discussed dural
graft options, at some length. He shared why he felt comfortable with the
allograft; I shared why I felt uncomfortable with it. My main reasons were that
it had only ~8 years in use/safety record and I know from my background as a
childbirth educator how many times something has "seemed" like a good
idea and been common practice for years... until problems were discovered after
it was used a number of times. There is so much we don't know in medicine, and
every choice has risks and benefits, so the question is never "which is
safe" and "which is dangerous" but more, which set of risks are
you more willing to accept for which set of benefits- which risks are you
comfortable taking?
AlloDerm
is still foreign material, even acellular as it has
been rendered, and it is still cadaver derived, so my concerns about
contamination could not be fully assuaged. The risk of donor tissue being
placed in
Dr. Scott
acknowledged the situation as I see it, remarking that he knew how I felt on
that issue, and that he knew I had done my homework, thus reinforcing my belief
that Dr. Sacco had discussed me and my green folder (and the 8x10 color glossy
pictures with the circles and arrows and the paragraph on the back of each one
telling what each one was… oh, wait, sorry, that was from Alice’s Restaurant,
but you get the idea…) with him in advance, but whatever. That is okay, since I
have surely talked enough about him behind his back!
If there were no other material available, I would be willing to risk the AlloDerm for the benefit it offers with the safety information that is currently available. I understand its good track record thus far. But since auto graft is a possibility, I just felt more sanguine about that option. Whatever can be "natural" about brain surgery, I am more comfortable with pursuing, rather than introducing a new set of risks from a foreign material. The known, up-front risks of auto graft vs. the unknown "down the road" risks of allograft were more palatable to me.
When we
were discussing pericranial auto graft, Dr. Scott offered "to email David
about it, I am sure he would be willing to do it if you would be more
comfortable". I assured him that I also thought Dr. Sacco would be open to
it, I just wanted his (Dr. Scott's) opinion on the
pros/cons of it before I requested it. I wanted to be sure it was, in fact,
what I preferred, and that there were no additional risks associated with auto
graft of which I was unaware, which might tip the balance of my comfort level
with the relative risks of each option.
The main
risk with using auto graft, other than the additional incision and thus the
increased possibility of infection, is that it can more readily form scar
tissue. And if it did, I asked, what impact would that have? He answered- the
surgery could have to be redone, because the scar tissue could take up the
space created by the decompression for the CSF to flow freely, and then we are
back to obstructed flow.
Also, in a
child as young as
Of the risk
factors associated with needing reoperation,
We talked
about the growth hormone connection. He said they see a lot of Chiari patients
and a lot of endocrine patients at the Boston Children's Hospital there at
Harvard, but they haven't seen a lot of kids having trouble with Chiari
seemingly because of the growth hormone. Neither is a terribly common problem
to have, but there is some sort of connection because a greater proportion of
children with one have the other, than the incidence of either problem in the
general population. But, there aren't likely that many cases out there of kids
with both GHD (growth hormone deficiency) and who have had the ACM1
decompression, at
I asked if
the growth hormone would likely stimulate more than usual scar tissue, which
might be a compelling argument against the auto graft, and he didn't anticipate
that to happen. The point of the rGH is to replace only what Virginia's body
isn't making but should be, thus to cause her to grow like most people would/do
without the supplementation, and linear growth doesn't impact scar tissue
growth, it's not apples to apples.
I asked if
he had found some people to be worse off from having the surgery than they were
before, and he said that in his thirty years as a neurosurgeon, he has lost one
patient from this surgery. The child developed a fungal infection "the
likes of which <he> had not seen before or since" and they tried
everything, but the child died. It is a tragedy, but I am not terribly worried
about that- one in thirty years is RARE, and it doesn't strike me as something
Virginia is at a great risk for, and besides, there is NOTHING to be done about
that. Infection is always a risk, when you do any sort of surgery, much less
brain surgery. Truly that is the kind of outcome that is only in God’s hands. I
was, however, glad that she is still breastfeeding, and generally has a strong
immune system!!!
Finally,
Dr. Scott mentioned that when Dr. Sacco left
I was
satisfied with this conversation and felt I had gotten my money's worth from
our second opinion, and was ready to discuss it with Kurt, who agreed that we
would pursue the auto graft option.
Thursday
morning, we went to
From this
appointment, we learned that
We
discussed the upcoming Chiari surgery and Dr. Ham said she would stop by to
check in with us the next week while we were in the hospital. We will get the
ball re-started rolling on obtaining insurance approval for the growth hormone
therapy once we get the green light from Dr. Sacco at Vi’s
post-op follow up appointment. We also talked about whether or not antibiotics
would be a good idea since
After our
appointment with Dr. Ham, we took two more loaves of pumpkin bread over to the
other building to Dr. Sacco's office, and I asked to see Nasia. She came out
and got her pumpkin bread, and I asked her to please give Dr. Sacco his loaf
and let him know three things:
1) Dr.
Scott and I have talked, and even though Dr. Scott thinks Dr. Sacco is a
complete whack job and said we should not pass go or collect $200 but should
get on the next plane to Boston and asked how I could even consider letting
that bozo cut open my kid’s head, I'm going to go ahead with the surgery.
(Nasia and I both laughed, since Dr. Sacco had told her I was getting a second
opinion from Dr. Scott to find out whether or not he was crazy),
2)
3) I need
to discuss dural grafts with him prior to the surgery at his convenience.
Nasia
suggested that she see if he were available, and I told her I was sure he was a
very busy man, and email or a phone call would be fine, but she went and
checked and then ushered me right into his office. She also talked with me
about how if
Then she
left, and a few minutes later Dr. Sacco came in wearing scrubs, so probably he
was available because he was between surgeries, is my best guess. I told him I
had been going to email him the above joke but that my husband didn't think it
would be a good idea to offend the guy who was going to cut open
He was,
however, curious to hear my account of what Dr. Scott said. I think probably he
had already spoken or emailed with Dr. Scott about the content of our second
opinion conversation but was just curious as to what I had taken from it.
Dr. Sacco
then, without ceremony, agreed to proceed with the auto graft if it made me
more comfortable- a "reasonable" alternative, he described it. I was
a little taken aback that he agreed without batting an eye, discussing my
reasons, or going over the relative risks/benefits of auto vs. allograft, but
grateful. Perhaps it seemed unnecessary to him to rehash them, if he were aware
of Dr. Scott's and my conversation, and Dr. Sacco’s and my correspondence re:
the studies. Or, perhaps he didn’t care much one way or another and wanted to
be accommodating, or perhaps he figured I was too pigheaded to change my mind whether
or not I had reasons, so why waste his breath or his time discussing it. It’s
hard to say, really. <Shrug> and "’S okay" and "’S all
right" are Dr. Sacco's frequent remarks in conversations with me, I have
noticed. But since we were on the same page, I was not going to question or
wonder about how or why.
He showed
me on a plastic model (after attempting on Virginia, who did NOT want to be
touched, what a surprise) where the incision sites would be, etc. We visited
about
After the
morning at the hospital, picking up the kids at their schools, making dinner
for the family and typing up my mother's lesson plans for two weeks since I
might be unable to do it the weekend after Virginia's surgery, Laura and I went
out to dinner for her birthday on Thursday night, since on her actual birthday
we would be preparing for surgery early the next morning.
She asked
me if I had come to the point of being able to surrender
While I
could not say that I was 100% where I was meant to be in acceptance, I told her
that I had made it to the point that, as crushed and despondent beyond words I
would be if Virginia's surgery had a bad outcome, I believed I could have
turned to God for comfort and thrown myself into His arms and asked Him to find
some meaning or purpose or good from my pain and reveal it, rather than turning
away from Him in anger or lashing out at others (i.e. the doctor, myself for
letting her have the surgery, etc.), because finally the outcome was not ours
to control but God's. That was as far as I made it along the path I was meant
to be growing towards.
It is an
important distinction to make that I don't think that the outcome of
I never
doubted that
In
retrospect, I could see that I had been given gentle signs that it was time to
let go of whatever it was, but had ignored or refused to respond to the gentle
instructions. I had stubbornly held tight and not been gracious in
relinquishing back to Him what God had given me, until damage or pain had
convinced me to let go.
That night,
Friday, I
worked all morning at Isaac's school getting everything taken care of since I
wouldn't be there for a week, getting caught up on Bible study prep, errands,
etc. and filing all insurance and financial information for the year to date,
clearing my desk- overall trying to leave things in order so I would not come
home to a mess. Mimi and PopPop kindly entertained
all three kids at their house for a couple of hours so that Kurt and I could
have a little downtime before the surgery. None of the children wanted to leave
when I came to pick them up- you should have heard Isaac and Virginia on the
full-sized drum set Jerry has... oh, wait, you probably DID hear them. That
noise you heard all across the nation was the two of them, jamming out!
Saturday
after working out and Bible study with Julie, we had a nice family day, with
time in the park at a birthday party, haircuts, etc. Sunday, we went to
After
church, we took Vanessa to a friend's house and had a quick lunch, then went to
my stepsister's birthday party, and straight from that to choir and Bible study
at
Monday
morning, after the normal morning routine, my mother and I headed over to the
hospital for pre-op. I was careful to show Mom how to get where we were going
because she is apt to get turned around- navigationally challenged! I assumed
that Nasia's estimate of an hour and a half was
optimistic and told Mom to plan on at least two hours, if not longer. We
received excellent service from Helen at the registration desk of Pre-Surgical
Assessment, and after a long wait, eventually were well taken care of by Nurse
Practitioner Joyce.
We did
spend a LONG time waiting, however... my friend from last year's Disciple
course, Cristy, who works in Oncology, came down to
visit us while we waited, and that was very comforting. She had some good tips
for us as far as coping with our hospital stay, and it was nice to see a
friendly face while we waited.
Finally it
was time for
If I had
brought a printed copy of the position paper with me, I might have fought it
longer, but since I was stupidly ill prepared to defend my position, I dropped
it. The paper does, however, clearly state that human milk is considered a
clear liquid and can be safely consumed up to four hours, or even in small
amounts, up to two hours, before anesthesia for surgery. However, it was not a
fight worth having at that point, because it wasn't Joyce's call, and
When we
finally finished the assessment, we headed for the lab for blood work, which
was as unpopular as you might imagine. Fortunately the nurse (whose name I wish
I had gotten, because she was very good) was able to get enough blood from
Virginia in one fell swoop (while I held her down and she thrashed and
screamed) before Vi blew out the vein- we thought we were going to have to
start over. From the lab, we went to the pharmacy to pick up the two doses of
steroids we would need to administer to Virginia at intervals that evening, to
help with inflammation from the surgery, but our order wasn't ready yet, so we
played on the playground for half an hour first.
I visited
there with a lady who had come to visit a 13-year-old girl named Veronica, who
was in a coma from a car accident with head trauma. I wondered who her
neurosurgeon was, and in my heart I said some prayers for that poor girl and
her family. I wish I knew her last name so that I could get an update on how
she's doing, but of course with HIPPA regulations, since I didn't think of it
at the time, I can't now. This conversation reminded me of how grateful I was
that my child was only going in for “scheduled” and “uncomplicated” brain
surgery. My heart just goes out to that family.
By the time
we finally got Virginia's prescription filled and bought some parking passes to
hand out to people when they came to the hospital to visit (which we then only
sporadically remembered to do, in our distraction, sigh), we had been at the
hospital for over four hours. Yikes! I was very grateful that my mother had
come with me, because entertaining
When we got
home, I packed up Vanessa’s and Isaac's things so they would be ready to go
visit grandparents during our hospital stay, and packed Virginia's and my
things for the hospital. I prepped for Monday night Disciple and got household
things in order for being gone. In the middle of this, the phone rang and it
was a lady from the hospital letting us know that our surgery time had been changed.
(Four hours at the hospital and all those timing instructions,
and now they are all different?! Argh.) Since surgery
had been moved from
Kurt and I
took the kids to CiCi's Pizza for dinner, since that
is Virginia's favorite- and it was quite a treat to go out to eat, much less on
a school night. After dinner, Kurt dropped me off at Disciple and the big kids
off at my mother's house, and took
At
Disciple, we were discussing God's calling- the call on Moses, on Ezekiel, on
Jeremiah, and on Isaiah, and their responses to those calls. When reading
Ezekiel 2-3 and discussing it, what really struck me was that Ezekiel's job was
to obey God. Whether or not he was "successful" in his job as a
prophet was not the point, whether or not people liked him or his message was
not the point, and it was no reflection on Ezekiel or his calling, what the
outcome was. If people heard his message and didn’t respond to it, that didn’t
mean that Ezekiel wasn’t called or hadn’t said the words given to him to say,
it didn’t mean he had done it wrong. All that Ezekiel was held responsible for
was obeying God. Sometimes with my human eyes, I judge a person's efforts, or a
situation, or a circumstance, based on my perception of whether or not it was
successful, but Ezekiel was pleasing to God (which is my ultimate definition of
success) when he obeyed Him, regardless of how the outcome looked.
So I was
finally able to take comfort from this and rest in the knowledge that up to
this point, I had followed the path laid out for me to take with
When I
released
Meanwhile,
back at the ranch… ha ha…
So Kurt and
I had succeeded in giving
We arrived
at Children's
At
Dr. Sacco
started to go over them with me, but he remarked that the form was information
"we have already covered ad nauseum." I
told him, I had already looked up the consent forms and read them anyway, to
which he replied that he was sure I had, so I signed quickly after only a
cursory scan to verify that it didn't say anything different than what I had
already read. The risks were all lined out there, including stroke and death,
but I was not afraid then, and the form contained no surprises. He quickly went
over what the surgery was going to consist of (yes, yes, I know) and Kurt asked
me if I thought I would be assisting, after all the research I had done- Dr.
Sacco remarked that I probably could! I assured both of them- NO, THANK YOU! He
said it would take about an hour to get her sedated and then the surgery would
be another 3.5 hours, and he would talk to us afterwards. I told Dr. Sacco that
I knew he could do this surgery properly, and I expected that he would.
Then he
left and Dr. Ortega came in and went over the drugs she would be administering
and in what order.
1- Versed
(sedative/amnesiac, to reduce anxiety)
2- Nitrous
Oxide (analgesic/laughing gas)
3- Sevo (general anesthetic)
4- Fentanyl (narcotic analgesic)
5- Vecuronium (paralytic)
<Then
they would intubate her.>
6- Isoflurane (general anesthetic)
7- Morphine
(narcotic analgesic)
8-Hydrocodone
(narcotic analgesic)
And after
surgery, gradually stepping down from Morphine, to Tylenol with codeine, and
then down to just Motrin and Tylenol.
Being a
natural-minded, crunchy granola kind of mother, the list was enough drugs to
make me choke- to make me think what the heck am I DOING here, letting them
pump my baby full of drugs and cut her open... but I took a deep breath, gave
her another hug, and carried on. Dr. Ortega had clearly not been warned
about me, she appeared to be somewhat impatient at having to tell me the names
of all the meds, and spell the two I was unfamiliar with so I could write them
down to find out about later.
I bet she
wasn't nearly as irritated, though, as she would have been if I had whipped out
the printed page from the American Society of Anesthesiologists stating that
human milk is a clear liquid and asking why she was considering it a solid? Fortunately for Kurt’s nerves and the pleasantries of
the situation, I was too tense and it was too late for it to matter anyway,
since it was almost time for the surgery, so I let it go. I may still send her
a screen shot of that policy position, when I send her a thank you note for
taking such good care of my baby. Perhaps it will help the next mother and baby
who have to deal with this situation, and since I am unlikely to run across her
path again, I have nothing to lose.
At
We took off
her socks and she didn't balk (thank you, Versed- obviously some had absorbed
before she puked it), but when we started to take away the little photo album
of our family that she had been looking at, she began shrieking. The staff very
considerately let her take the album into the OR with her and told us they
would bring it to us in the waiting room once she was under and didn't need it
anymore. That kind of deviating from routines for the benefit of the individual
patient's needs, rather than insisting on "doing it how we do it because
this is how we do it", is a good example of what makes Children's an
excellent (and in my experience, unusual) hospital.
The nurse
explained to us that they would call us every hour or so (but don't set your
watch by it, because it's more on an "as we have opportunity" basis)
during the surgery to update us, then Dr. Sacco would come talk to us, then
after they got Virginia to the recovery area from the operating room, we would
be allowed to come see her as she was coming around, and then we would move to
the ICU. We took her photo there in the hall, and then at
We looked
up and realized we did not know where Chris had gone, so Kurt went to the
reception desk so the nurse could direct us to the surgery waiting room. I,
however, went directly to the nearest bathroom, and bawled my eyes out in
privacy. I just cried and cried, wrenching sobs, until I heard someone at the
door trying to come in to use the facilities. Then I composed myself, quickly
washed my face, and went to go find Kurt and Chris.
As soon as
we were all reunited in the waiting room, Chris immediately opened his Bible
and we had a prayer for health for
Around
At
Mom found
her way to us at
At
It was a
joy to me to do the introductions all around, so many loved ones present, all
having decided to take the time off to come and sit vigil with us, when Kurt
and I had asked no one to come, not even our parents! The sheer numbers of
people who loved us enough to insist on coming, even when I had thought that I
didn't need them there so I hadn't made the request, and the love and support
palpable in the room, just kept us all borne up. I will be eternally grateful
to each and every one, for their not taking no for an
answer and being present for us without waiting to be asked. I have personally
had to learn, grow, and stretch a lot, in many ways, through this experience,
and one of the main areas I have been getting a lot of practice in, is learning
to let go of my pride and be a gracious receiver of love and gifts and
service, rather than only being comfortable in my preferred position as giver,
volunteer, and one who serves. Kurt and I are blessed, humbled by, and grateful
for, the many people who love us and have shown that love so freely.
Finally at
Surrounded
as we were by so many loved ones, there were several conversations going at all
times, and that was a boon to me, since I couldn't be still or focus on small
talk. I had brought a book, I don’t know what I was
thinking?! As though I could have read a word and taken it in! It occurred to
me, as I listened to the conversations swirling around me, that this was what I
had envisioned for Virginia’s birth, but had labored too quickly to have- we
were surrounded by family and friends waiting with us for good news. And, in a
way it was even better than I had dreamed for
I was
grateful to my granddad, Chris, and David for an engaging discussion about
diaconal vs. elder ordination and the complementary but separate roles of
teaching vs. preaching in the church, and later for a fascinating discussion
about infant vs. believer's baptism (Chris, I want to discuss this some more
when I am able to more fully attend and participate in the conversation, I was
too distracted to absorb all of what you said... I guess I should have gotten
out my green folder and taken notes, for future pondering purposes!), the
Nicene Creed, and David's paper on doctrinal standards (which, by the way,
David, I am still waiting to receive my copy of, do you need the self-addressed
stamped envelope Dr. Sacco declined? I still have it available…).
As long as
I was involved in this discussion, my anxiety stayed at bay, theology proving a
much better distraction for me than the small talk going on around me (which
ordinarily I would have enjoyed). At
About ten
minutes later, Jamie needed to go back to work but she offered to show me where
ICU was so I would know where
However,
all’s well that ends well and no one had to wait long for the news on my
account, since I was back in the room before Dr. Sacco had gotten all the way
out, so he came back and gave me the rundown. (I later heard Kurt tell someone something
like, "Delilah was nodding like she understood what all he said, so I am
sure she did, but I was just glad to hear it had gone well, the rest of it went
straight by me.") You could have heard a pin drop in the room, even with
all these people present, hanging as we were on every word.
Everything
had been, when Dr. Sacco opened her up, as it had appeared to be from the MRI,
which is a very good thing. There were no nasty surprises that would possibly
complicate matters. The cerebellar tonsils had actually extended down to C2,
not only C1, and the right side was somewhat more herniated than the left, but
overall, everything had gone exactly as it was expected and planned to, without
complication or deviation from the plan. I wrote down what Dr. Sacco said, and
he paused to give me time to write it all down, more from habit than because he
was saying anything unexpected that I needed to note.
A couple of
family members asked questions I already knew the answer to, which Dr. Sacco
patiently answered, and Kurt asked about her ability to travel in two weeks.
Cautioning us against, for instance, a deep sea fishing trip, Dr. Sacco said
that just a normal visit a couple of hours’ drive away for Thanksgiving would
be fine, as long as she felt up to it. My granddad was delighted to know he had
the go ahead to buy the turkey!
As soon as
Dr. Sacco left, we spontaneously began to rejoice and broke into prayers of
thanksgiving, led by Chris and completed by my granddad. My mother remarked
later that she had never, in over 15 years of knowing him, seen Kurt cry
before. Then everyone except Kurt and me left, to go home or to get lunch,
while Kurt and I waited to be called to the recovery room. I ate half a chicken
breast I had brought from home, which tasted like sand and I couldn’t have
cared less about. Mainly Kurt and I just stood alone, embracing, and feeling
too grateful to need to speak.
The hour
between when Dr. Sacco left us at 12:20 and when Kurt and I were able to go to
Virginia in the recovery room passed by very slowly. It seemed particularly
slow since the dadgum clock in the waiting room was
off by between 6-7 hours, so while it always drew my eye to see if time really
WAS standing still or if it was just me, it never enlightened me as to what
time it was, unless I wanted to do the math. We even tried to remove it from
the wall and set the time properly, but couldn’t find the controllers. Anyway, a little while later, everyone
returned with lunch and the atmosphere felt like a party!
My mother
in law cracked me up when she remarked that Dr. Sacco clearly found me
“tedious”- no, no, Laura contradicted, not tedious- THOROUGH! No, no, insisted
my mother in law- definitely tedious. He respects you but finds you tedious. My
turn to <shrug> and say “’S okay.” As long as
1:20 p.m.
Finally, at long last, Kurt and I were called to the recovery room and only
allowed to go in one at a time. The recovery room was a large ward with only
curtains separating the beds of children recovering, each with their own nurse.
Virginia was just coming out of the anesthesia and looked quite awful. I took a
photo and then began talking softly to her. When she heard my voice, she began
to respond by crying, which was NOT the effect I was going for. I got as close
to her as I could (the beds have metal rails and were high enough that I
couldn’t reach her cheek to cheek without being on my toes) and started singing
in her ear. She calmed down from that, and the nurse told someone on the phone
that Virginia was agitated but that hearing her mother sing was calming her
down. When she was quiet again, I went out and let Kurt come in and see her,
and he was in there for what seemed like eternity. Later I found out it was
only five minutes, but that was just crazy too long for me, as I stood in the
hall and couldn’t see her, even when I peeked through the window, because of
the curtain. Finally I told a passing nurse to please send my husband out
because he was hogging the baby. LOL
I went back
in to Virginia while Kurt went back out to the waiting room to tell everyone to
gather their things, to prepare to move to our room in ICU. Karen and Betty
arrived around then, so I never got to visit with them or give them a hug. When
I got back to Virginia’s partition, she was more conscious and agitated than
before. Emily, her nurse, suggested I sing to her some more since that had
worked to calm her a few minutes prior, so I began singing “This is the Day
that the Lord Has Made” again, which we sing in the car on the way to take
Isaac to preschool each day. Unfortunately, this time, instead of calming her,
she began crying out “Maaaa!” in this terrible, raspy
voice (from having been intubated) and she got up on
all fours- an hour after brain surgery!- to try and climb out of the bed and
get to me. This was heart-wrenching and nerve-wracking to me, and I called
Emily back over to please try and help me get her laying back down, while I was
murmuring quietly to her that I was there, etc. She kept crying “Maaa!” and breaking my heart.
She
couldn’t even suck her thumb because she had tape, tubes, and wires on both
hands (and both feet, and her chest, and a bladder catheter in and strapped to
her leg, etc. not to mention she was naked so they had covered her with a
blanket, but being covered in a blanket always annoys her), and I was at a loss
as to how to help her. All she wanted was for me to pick her up- when I asked
her if she wanted to nurse and go night-night, she nodded her head, which made
me wish I hadn’t asked… it didn’t seem like it could possibly be good for her
to be nodding her head an hour after brain surgery, and to make matters worse,
I couldn’t actually nurse her and put her to bed, so my asking and her assent
was fruitless.
2:30 p.m.
She was pretty upset and nothing much was helping, including a quick dose of
Demerol, so Emily figured that getting up to the ICU where I could hold her as
soon as possible would be better than trying to wait to go until she was calm
(since calm did not appear to be on the horizon), not to mention that maybe the
movement of the bed would help, so she and a tech and I surrounded the bed and
pushed it out into the hall to the elevators. Everyone got their first look at
her as we did this, which was not terribly reassuring, since she was making the
pitiful “Maaa Maaa” cries,
was still coming out of the anesthesia, and was covered in tubes, wires, etc.
We took the elevator to the 11th floor ICU, and the family and
friends took a different elevator.
As we
arrived at the doors to ICU, Emily instructed everyone to go to the ICU family
waiting room and get ID badges and orientation, while they got Virginia settled
into her room, and then in 10 or 15 minutes, people could visit, no more than
two at a time. I tried to go get my badge, but when I let go of her and stopped
talking to her, Virginia got completely hysterical and was shrieking in her
hoarse little voice, so I asked if maybe someone could go and get a badge for
me? I wouldn’t have had orientation though, Emily said. Well, okay, how long
does orientation last? Just a few minutes… hmmm, okay, can you and the orderly
stand here, with my mom or Kurt staying with Virginia, while I run get my badge
and get oriented, and then I can go in with her while everyone else goes and
gets their badge and orientation, so she is not alone with strangers? Emily
agreed to that, so I tried to tell Virginia that Mommy would go potty and be
right back (usually this is effective, because she understands the “gone for
one minute and then back” timeframe of it) but the moment I let go of her and
stepped back and my mother stepped forward and started murmuring to her,
Virginia started screaming “Maaa! Maaa!,”
again. At this point, Emily said whatever, forget the badge, come on in.
So in we
went, to E11 room 419, and I stayed with Virginia while they did the intake
routines. Dr. Sheehan and Lisa, Virginia’s day ICU nurse, and other assorted
people checked her out and she was quite miserable through it all. When they
had done their procedures and assessments and asked me if I had any questions
or concerns, I just told them that my only concern was my child (who was still
wailing) and asked what needed to happen for me to be able to pick her up and
nurse her as soon as possible, because that was what was going to make the
difference in getting her to calm.
Dr. Sacco
had told me that as soon as she wanted to post-op, she could nurse, as long as
I was aware that she would probably just throw up. I told the nurses he had
said this, but they needed to get orders regarding it before I could proceed,
so we waited while they contacted him. Virginia plaintively cried, “Maaa!” the entire time. Mercifully, they were back with
consent quickly, and helped me get Virginia situated in my lap in the wooden
rocking chair with all her tubes and wires. She stepped down from screaming to
only whimpering once she was in my arms, and as soon as she began to nurse, she
relaxed and quit even the whimpering. We all breathed a sigh of relief at that,
because it had been excruciating to hear her up to that point!
2:55 p.m.
Laura came in to see us before going home, while Kurt went to the car to bring
in our things, now that we had a place to bring them. Dr. Sheehan came in to
check Virginia’s heart rate (while she continued nursing- and had not thrown
up, praise God!), and she remarked that with babies Virginia’s age, the comfort
was more important than the pain management, so she was very supportive of
Virginia’s continuing in my lap and nursing, which was a relief. Hearing those
pitiful “Maa Maa!” cries
was too high a price to pay to be able to stand up, and I was prepared to sit
motionless in that hard wooden rocker until the next day, if need be!
3:35 p.m.
Julie and Charlie left, after taking a photo of Virginia’s incision covered by
the dressing, which was stapled to her head. (There was a lot of speculation
about what sort of device is used to staple a dressing to someone’s head. I
will have to find out about that when next I see Dr. Sacco.) It was about this
time that I discovered the small plastic bag with Virginia’s hair in it- Dr.
Sacco had saved it for me, without my having asked! This made me unreasonably
happy, to have the lock of hair from her first haircut. I certainly would have
asked if I had thought of it, but I hadn’t, so it was wonderful to have
received what I hadn’t even thought to ask for.
4:05 p.m.
Dr. Sacco came in to check on her (and dismissed my gratitude for his
thoughtfulness about the hair, saying that he isn’t the only one who does that…
um, okay, but you’re the only one who did it for MY kid, so my gratitude
stands!), and said he’d be back to check on her in the morning. She was
sleeping peacefully at that point, and wasn’t fighting being covered in the
blanket. A friend whose son Dr. Sacco had operated on for complications from
his Chiari decompression called to check on Virginia, which was very
thoughtful.
4:25 p.m.
Virginia was calm enough for Kurt to hold her. I went to the waiting room and
(belatedly) got my ICU badge, and saw that Jamie and Jerry had brought us
dinner, Karen had brought cookies, and Betty had brought snacks… we were well
taken care of! Ray and Penelope also came to visit.
5:00 p.m.
My sister brought Vanessa and Isaac to see Virginia. It was so good to give my
big kids a hug! Unfortunately, due to hospital policy, they were not allowed in
to see Virginia until Child Life had talked to them first, and it took 45
minutes for Child Life to show up. By that point, the kids were hungry, tired,
bored, and not in the best mood. I think their visit with Virginia would have
gone much differently without the long delay. We finally got in to see her, and
they were going to make cards for her, since she was asleep. A squabble broke
out and Isaac began to cry, at which point Virginia roused and began to cry,
and it took a few minutes to get everyone calm again. Virginia did open her
eyes and look at her siblings briefly and we took a family photo, an
opportunity for which I was so grateful and did not at all take for granted.
6:00 p.m.
My mother took the kids home, Kurt went to eat so that I could then take a
turn- no food allowed in the ICU room. We briefly discussed that if we ever win
the lottery, we should provide a more comfortable chair for each ICU room than
the hard wooden rocker.
7:00-8:00
p.m. is shift change and Lisa mentions that generally they ask the parents to leave,
go eat dinner and take a break at that point, etc. When I tried to put Virginia
in the bed to follow these instructions, she got hysterical and Lisa suggested
that I just stay put after all. After shift change, we met our night ICU nurse,
Mandy.
8:00 p.m.
Kurt finished eating dinner, so he came to hold Virginia while I went to the
ICU waiting room to eat. I visited with my sister and the other family in the
waiting room, another of Dr. Sacco’s patients, named Dylan. Dylan’s
circumstance is a very sad one, and the photos his grandparents showed me of
him just broke my heart. He was in ICU for an unexplained head injury that
occurred while he was in the care of a babysitter. He had been in ICU for days
at that point and was still not conscious. I wish I had gotten their contact
information as well, for updates on him. He was so precious in the photos I
saw. I prayed for his full recovery, and again thanked God that if I had to be
in the ICU with Virginia, at least it was for what it was and not other circumstances
even harder.
9:00 p.m.
My brother-in-law Chris arrived and visited with Kurt, while my sister and I
visited with Dylan’s family, and then Kurt and Chris went home while Nane and I
went back to Virginia’s room. I asked Linde, the ICU
nurse shift leader, about what we could do with the fold out bed. I was trying
to determine how to get the couch close enough to Virginia’s monitors that I
could spend the night holding her on a padded surface, rather than the infamous
hard wooden rocking chair. Bless Linde’s heart, she
went above and beyond my request, offering me a regular hospital bed instead of
the crib (which Virginia had yet to be in, since arriving in ICU, because if we
tried to lay her in it, she went into hysterics). We were all tucked in- Mommy,
Virginia and the wires- by 9:45 p.m. Comfortable, it was not, but better than
the wooden rocker, it most decidedly was!!!
10:30 p.m.
My sister left to go home, after surreptitiously bringing me a drink of water
to the hospital bed. Once I was in the bed with Virginia, I was really trapped,
because if I moved at all to where Virginia was not in full-body contact with
me, she roused and began crying. It was a bit claustrophobic, actually, but I
was so grateful to be there, with her aware enough to know whether I was with
her or not, that I was not complaining! I had a book, my pen and notebook, and
photos to occupy me and give my mind a path on which to wander away, even if my
body was captive in the bed.
The hardest
thing about being in the hospital for me (other than worries for Virginia’s
health and wellbeing, obviously) is my discomfort and how vulnerable I feel
from the lack of privacy. I am pretty much unfazed and completely unconcerned
by anyone else’s bodily functions, but with regard to my own, I am quite
modest. (My sister might say prudish.) I couldn’t sleep through someone being
in and out of the room, I couldn’t bear the idea of taking a shower in the
bathroom in the hall of the ICU, it was even stressful to me to take a shower
in the bathroom in the private room once we got moved, because the door to the
bathroom doesn’t latch- if someone had walked in and bumped it, it would have
swung right open. Having to announce my need to use the necessary facilities
because I had to ask a nurse to hold Virginia so I could go to the ladies’
room, represented a complete lack of privacy which was difficult for me. Maybe
it’s a control thing… it usually is, with me! I don’t know how people stand it
for long periods of time… well, having said that, actually, I guess I DO know.
When your child needs you to do something, however uncomfortable it is, you
just do it. That’s it. There is no heroism to it, really- what they need, if it
is in your power to do, you do. What is the other alternative?
In ICU,
Virginia was checked by her nurse every hour for temperature, her eyes, bladder
output, blood pressure, listening to her breathing, etc. in addition to being
on the continuous monitors for blood oxygen levels, heart rate, etc. and
periodic blood draws for lab work. When she was on the morphine, she sometimes
only fussed from being checked, and other times screamed. It got to where we
tried to do the checks while she was nursing, when possible, because she would
be the least upset that way. However, that did mean she was nursing most of the
night and I was wedged into the same cramped position for long stretches to
allow her to do it. The monitors went off every so often, if Virginia shifted
her position causing a reading outside the acceptable parameters, and they
continued to go off even once the reading returned to normal until someone came
in to reset them. Mandy was taking care of Virginia and one other child, and
could not hear the monitors in our room from the other child’s room, so this
was an ongoing “hit the call button” process all night, keeping the alarm bells
off. I hated to bother her with it, because I think that the other child she
was monitoring wasn’t doing as well or wasn’t as stable as Virginia, but the
beeping was loud and grating and I had a migraine.
From 11:15
p.m. until 1:15 a.m. we were watching Virginia more closely because she had a
reading that could have indicated acidosis. Mandy also asked if she had ever
been diagnosed with a heart murmur. I said she had not, and she said she wasn’t
sure if what she had heard had been a heart murmur, or if it were just hard to
get a good reading because Virginia was screaming so much when she listened
that time. I tried to get out of the bed at midnight, but this agitated
Virginia terribly and even when I immediately cuddled back up to her and nursed
her, she was still whimpering while nursing. We gave her more morphine, and by
12:35 she was sleeping. By 1:20 a.m. her blood work had come back low normal,
and Mandy hadn’t heard anything else that sounded suspicious while listening,
so I was relieved by that, and slept for about 40 minutes.
At 2:10
a.m. she was upset again and so tangled in all the tubes and wires from her
fitful thrashing that we had to detach much of it and start over. Mandy stayed
with us, chatting with me and keeping an eye on Virginia, until 2:40 that time,
because it took that long before everything was calm again. I was then able to
sleep for almost an hour and a half, out of sheer exhaustion.
4:00 a.m. I
actually felt sort of rested when I awoke with a start, thinking Virginia felt
a little warm to me. Her temperature was 100.1, which was under the threshold
at which point they have to treat it (100.9), so we were just keeping an eye on
that.
At this
point, I really needed to use the facilities and asked Mandy if she could stay
with Virginia so I could go. I tried to sneak out of the bed, but that didn’t
work, so then I tried to whisper to Virginia that I would “go potty and come
right back”, but she screamed. Mandy said probably if I were out of the room,
Virginia would adjust and do just fine, so I hurried away down the hall, but I
could still hear her screaming until I got out of the ICU and into the main
corridor. I rushed back as quickly as I could, and as soon as the ICU doors
opened for me, I could hear her still screaming. When I dashed back to
Virginia’s room, less than two minutes after leaving, I found Mandy covered in
vomit. She had to call for someone to bring her new scrubs and Virginia took
about twenty minutes of soothing talk, nursing, and cuddling before she stopped
with the shuddering sobs and sighs. That’s a lot of effort required to recover
from my bathroom foray- I regretted sneaking the bedtime water by that point!
Mandy
probably regretted thinking that I was exaggerating Virginia’s extreme
separation anxiety, too! (Truly, folks, I AM able to separate from her -it is
she who can’t handle separation when she is hurting or in pain. I am not
neurotic. Really. No, really!) Although much to her credit, Mandy and I did
laugh and agree that if it is necessary to be covered in bodily fluids of some
kind, breastmilk vomit is the one we would each pick, so no big deal, at least
for the adults.
At 5:30
a.m. Virginia’s temperature was still 100.2 and she was still crying off and on
between nursing, so I asked for her to be given more morphine. They did a 6
a.m. blood draw in preparation for morning rounds, and her labs were all right,
plus her temperature was back down to 98.5, which was good. Dr. Wruble (sp?) came in briefly at 6:50 a.m. and Virginia was
the most out of it she had been, so I was able to get out of the bed without
her doing more than just stirring but then calming when I spoke to her.
7:15 a.m.
Kurt arrived, making it feel like it was officially Wednesday morning, rather
than just a continuous long extension of a never-ending Tuesday night, and went
for coffee, which Lisa kindly did not take notice us drinking in the room with
Virginia.
7:30 a.m.
Dr. Sacco arrived with his entourage and asked if I were making it okay, (I am
sure I must have looked pretty ragged, but of course I assured him that I was
doing mighty fine, all things considered!), and he asked if Virginia had been
nursing. I said she had been nursing almost non-stop and had only thrown up
once, when I left the room.
“She throws
up when you leave the room?”
“No, she screams
when I leave the room, and she throws up when she screams like that.”
We talked
about her fever, which he said might come back over the next couple of days, but
that as long as it is low, this is normal and all right; that today we could
take the bladder catheter and arterial line out and move out of ICU to the
floor; and that he would take the dressing off her wound the next day. All of
that was very welcome news!
Kurt and I
enjoyed about 20 minutes of coffee and quiet (and I enjoyed some migraine
meds), and Jamie arrived with breakfast Jerry had cooked for us, which Lisa
kindly did not see that we ate. Then Virginia woke up and was distressed that I
was not holding her, so we reassumed our previous day’s position in the wooden
rocker. At 8:30 a.m. she got her catheter and arterial line taken out, which
was not at all a fun process to accomplish, but we were all very glad when it
was done- the fewer wires and tubes, the better. It was a quiet morning,
visiting with people on the phone and in person, while we waited for the okay
to move to the floor.
Around
10:00 a.m., Virginia really seemed to awaken for the first time since surgery,
and took an interest in us reading her books and showing her the photo album
and the little balloon Julie had brought her. She wasn’t very animated, but she
was watching and saying an occasional word, and it was wonderful to see her
interacting with us and communicating about anything besides pain! She even
consented to eat about a third of a banana, which we found encouraging. My
mother arrived at noon and Virginia let GrandDottie hold her, which was balm to
my mother’s soul, not to mention greatly appreciated by my aching back! I also
discovered that Dr. Ham’s nurse Dawn had dropped by a little something for me
that was exactly what I would most appreciate, but when I called to thank her,
she just told me that she was under the weather so she could not come in to
visit us. It was so thoughtful of her and I greatly appreciated her gesture.
She knows me well, to know what I would most want!
At 1,
Virginia was no longer satisfied with anyone holding her but Mama, so my mother
and I traded places. I quickly learned why Vi wanted Mama, when she got sick
and lost most of the banana all over me, so we had to get tidied up from that.
Then there was a bit of confusion over getting the orders so we could leave
ICU, and Virginia refused to be transported in the bed, so we had to detach her
monitor and all that she was connected to, for the orderly to carry by hand.
Finally it was all worked out and we asked Virginia if she were ready to go,
and she perked right up and said plaintively, “SHOES!” Poor thing, she thought
we meant we could go home- but at least the change of scenery was a good change
for her and she felt well enough to push the elevator buttons, which cheered
her up.
By 1:40
p.m. we had moved to E9411 and it was wonderful to be out of ICU! Our cheerful
nurse Heather came and did all the usual review of orders, vital signs, etc.
Because the rest of the banana returned from whence it came at this point, the
process took a little extra time. Virginia only vomited twice (other than the
middle of the night screaming episode), which was great since we had been
prepared for her to vomit a lot for the first couple of days post-op, and we
assumed that the unaccustomed difficulty of trying to digest while moving from
floor to floor was maybe a little much for her recovering system.
Getting situated
also took a little extra time since I had to re-obtain new approval for
Virginia to have a regular bed instead of a crib with the new set of staff
members. I explained to the supervising nurse that yes, I understand that it is
not usually allowed, yes, I understand I might have to sign a waiver, not a
problem- I would be happy to sign a waiver, yes, I understood that the hospital
does not recommend regular beds for patients under three, yes, I know that it
is not the way you have found it to be better in most cases but since I know
our situation best I would still like you to bring the regular bed, yes, yes,
yes, where is the waiver, let me just sign it and let’s be done, shall we? (I
was very polite, but this is the kind of conversation, putting procedures/
policies/ liability fears above patient needs, that drives me crazy when I am
supporting a woman in labor and I certainly was not going to put up with it for
Virginia. There was no reason for me to spend the night in the rocking chair
because of “procedure”.)
Our new
orders only included a vital signs check and neurological exam every four hours
instead of hourly, only Tylenol with codeine instead of morphine (upon request,
for pain), and only Toradol
(analgesic/anti-inflammatory) and Zantac (to protect her stomach against the
steroids she had been taking- I was glad of this, since one girl I know of had
a perforated stomach following Chiari decompression and had a really dreadful
recovery) at scheduled intervals through her IV. Once Virginia was settled in
from all this “being messed with” and being sick from the banana, she was okay
with sitting in GrandDottie’s lap again so that I
could take a long-awaited shower. Kurt promised not to let anyone bump the door
(which doesn’t latch), and I wanted to be clean badly enough to deal with the
stress of no privacy!
Alexandra
(one of our pastors from FUMC) arrived for a visit at 3, and Dr. Ham came to
visit Virginia at 3:15. It was a pleasure to have company, and we appreciated
Dr. Ham’s warm and personal care as always. We had a steady but not
overwhelming stream of visitors and phone calls throughout the afternoon, just
enough to pass the time and stay busy, but not too many. Since the nursing
staff no longer had to come and “do things” to Virginia every hour, she rested
pretty well in Kurt’s, my mother’s, or my lap all afternoon, nursing off and
on, but without much interest in interacting (books, talking, balloons, photos,
food) like she had shown in the morning, which was to be expected but a little
disappointing to me.
At 4, she
began shivering, so I took her temperature (and she didn’t like it just a whole
lot better when I did it, compared to the nurses, unfortunately), and it was
back to 100.2.
By 4:30,
her temperature was actually up to the 100.9 degree threshold, so I called for
Heather to come and Virginia had some Tylenol with codeine. That worked out
very well, because my sister arrived with the children at 5, closely followed
by Ray from Tyler Street, Marcie and Sydney from Isaac’s preschool, and Julie.
I sent Kurt
and the kids to the gift shop to choose helium balloons for Virginia, and by
the time they got back, the meds were kicking in and Virginia could smile at
her big siblings and grab for the strings of the balloons and show pleasure at
seeing them. This was a much better visit than the previous day’s family time
in the ICU, for all three kids! Isaac was THRILLED that “one of my teachers
from my school” and “Braden’s mom” had come to see his baby sister. (Marcie
suggested to Isaac that perhaps one day he could grow up and be a neurosurgeon
and help other kids like Virginia, and he replied that he did “not know how to
do brain surgery yet”- as though it were merely just a matter of time!)
Virginia even sat up for a few minutes and sang a little and did the hand
motions to “Sing Hello” from Musikgarten. Wonderful! That’s more like it!
By 6, her
fever had broken, my mother had taken the big kids home, and most of our guests
had left, but Julie and my sister were still there, and Nane started to eat one
of the chocolate chip cookies that Karen had brought for us the day before. We
were delighted when Virginia sat up in my lap and demanded a bite of it! (I was
less delighted when my sister actually GAVE her the bite- no solid food kept down
for two days and we start with a chocolate chip cookie?!) However, Vi also ate
some black-eyed peas and green beans off of Nane’s
plate, and drank some whole milk that the hospital room service brought. She
ate one bite of a PB&J sandwich, and even a couple of bites of corn
casserole and chicken Parmesan that our friend Leslie stopped by to bring us!
We were thrilled that she was feeling well enough to want all this “normal
food” and even more so that she kept it all down. What a change from that
morning, or even the afternoon!
By 9:15
p.m. I was completely exhausted, after about 2.5 hours of sleep in the last 40,
so Kurt stayed for another hour while I dozed. When I woke up at 10:30 p.m., I
was refreshed enough from the hour of rest to resume “duty”. Virginia had a far
better night than the night in ICU, in large part because I had asked one of
our nurses, either Sarah or Heather, to turn off the sound of the monitor in
the room. Whenever her wires were jostled and the alarm would go off, saying
that the reading was not within normal parameters, it would sound at the
nurse’s station, but only flash in our room. This was so much better than ICU!
I got 3.5
hours of sleep in one stretch from 12:45 until 4:15 a.m. and thought to myself
when I woke up, this is as much sleep as I have gotten at home on any number of
occasions!
I was up
and feeling perky by 6 a.m. Kurt had arranged it so I could check my email on
our laptop in the room- and Virginia slept through my doing so, for TWO HOURS!
It was reassuring and fun to read all the messages of support people had sent
and to know that I had good news I would be able to share about Virginia’s
recovery as soon as I had an opportunity.
Virginia
woke up at 8 a.m. to a beautiful new day. I could tell right off the bat that
she felt far better than she had the previous day. We decided to try only
Tylenol instead of the Tylenol with codeine, because I knew that the sooner she
could tolerate this, the sooner we could go home, and since she was acting so
chipper, we thought it was worth a try. We were also delighted to get the
oxygen saturation monitor off her toe, and all the leads off her chest, leaving
her with only the saline lock (IV port) in her foot, and the dressing over her
incision. Being attached to so many less machines was great, although as
always, the process of having the nurse touching her to get the things off was
traumatic. By this point, Virginia screamed whenever anyone wearing scrubs
walked into the room, even if they did not come near her or touch her- like for
instance, the janitor who was emptying the garbage and completely minding her
own business, while Virginia shrieked at her presence. However, once each
scrubs-clad person began to walk out the door, she would stop screaming and
start waving “bye-bye!” (Along the lines of, good riddance, get thee gone,
don’t let the door hit you on the way out!)
Virginia
started the day by refusing to be covered in the blanket, which is much more
like her, than her laying around in my lap in a diaper and a blanket like she
did the entire previous day, and only occasionally having the energy to kick it
off or get annoyed by it. Poppy arrived with a blankie
bear, which she consented to snuggling in for an hour or so before refusing it
as well.
She felt so
much better, as was evidenced in so many ways… she ate two bites of Daddy’s
chocolate muffin (Argh! Chocolate muffin, honey?! But of course, we were so
glad she had an appetite, that chocolate muffin it was…) and drank some milk,
she wanted to draw and did so, at length… she tattled for the first time since
surgery- it’s funny the behaviors we get excited about our convalescent
children resuming, eh? (“Mommy. No-no. Notes!” “That’s right, honey, Mommy said
you may draw on your paper but not on my notes... Hey, look, Kurt, she feels
enough better to tattle!”)
She looked
at her photo album and called Kurt’s parents by name, clear as a bell, for the
first time ever- two new words! She was happy to play, “I throw, you fetch the
ball” with me for twenty minutes straight, and then she ate a healthy portion
of scrambled eggs and insisted that they were not eggs, but couscous (?!)… She
even felt well enough to try and rip out the dressing over her incisions, from
which I distracted her by letting her put her regular pajamas from home on. All
of this by 10:30 a.m.!!
10:45 a.m.
Dr. Sacco stopped in with the entourage, dressed in a very spiffy suit, which I
remarked on- he joked that it was to impress that guy, indicating another man
in another spiffy suit. We were not introduced, but I think it was Dr. Weprin, another neurosurgeon in the practice. It must have
been spiffy suit day. Personally, I was just grateful that he wasn’t wearing
scrubs, so that Virginia didn’t start screaming at his mere presence in the
room. I mentioned that she had been trying to rip out the dressing, and he said
he would come back to remove it for her, in a more standard way, in a few
minutes. I passed the time waiting for his return by fetching the ball for
Virginia some more, and taking more Advil for yet another migraine. I think
that I really must make time to go to acupuncture ASAP.
11:05 a.m.
Dr. Sacco came back sans entourage. I held Virginia down while he removed the
staples and dressing, and checked her incisions. We talked about how she was
doing, and he told me that the nurse would come in to wash her hair and do the
wound care, etc. I was concerned that it would hurt her to rub on the
incisions, but he assured me that infected dissolvable stitches would be much
more painful. (Quite!)
Then a
nurse came in and Virginia began screaming, and we remarked on her extreme
distaste for the whole scrub-wearing population of the world. I told him about
how she had wanted to put her shoes on and leave the hospital the day before,
straight from the ICU. He asked what we were doing about pain relief, and I
told him we were on regular Tylenol (no codeine) and still the IV Toradol, but doing fine. He questioned me about how she was
eating, on which I was delighted to report, starting with the banana and what I
considered the marvelous progress she had made from that point in the last 24
hours. Then Dr. Sacco began telling me about how to watch for signs of
infection or neurological complications, and a little more about care of her
incision.
Gradually,
it dawned on me that he had shifted gears and now was talking about me doing
all these things, rather than the nurses coming to do them, and I said, “Wait,
do you mean we are going home TODAY?” (I wish we had taken a photo of my face
at that moment- I was so shocked and thrilled, I could have kissed him!)
He looked a
bit taken aback and said we certainly didn’t have to go home today, he
was fine with us staying at least another day or two, but hadn’t I just said I wanted
to go home today?! (Oh, yes! If we are okay to go home today, we definitely
want to!)
He said
there was nothing magical about the hospital for healing, especially not for us
(either meaning how much Virginia hated it there, or how meticulous I was about
the monitoring process, not sure which- or maybe both), and that I could do
everything for her at home that they were doing for her at the hospital, as
long as she was eating/voiding okay and her pain could be managed on Tylenol
and Motrin. After assuring me that I should call if I had any concerns at all
and that he would see us at any time if we needed to be seen, and that he knew
that I knew where to find him, he left to go sign release orders for us.
I thought
my heart would burst from joy! Getting to remove the IV from Virginia’s foot
and replace it with her beloved shoes, packing up the room, and waiting for
Kurt to come around with the car and the nurse (Anna) to escort us down with a
cart, I was so overcome with relief and loaded down by my blessings, there are
no words to describe it really. And how rare is it for me to have no words?
Both Virginia and I were giddy, beaming and glowing, I am sure.
We piled
into the car and set off for home. Virginia fell asleep in her car seat before
we were even out of the parking lot, so relieved to be on her own turf. Kurt
drove and I called and left a message for my stepdad that we were on our way
home, and then called to spread the good news to my sister (who wanted to go
surprise Vanessa with the news), Julie, and Kurt’s parents.
I just had
to go tell my mother in person, though, so we made a brief detour to her house
and I ran up and rang the doorbell. She was shocked to see me standing at the
door, and tearful and overcome with joy just as I was. It was a beautiful gift
for me to be able to offer her, after her steadfast and many-faceted help over
the course of this ordeal. At times I had felt like she was trying to do too
much for me, and had been uncomfortable to be at the receiving end of so much
assistance- but when I looked at my Virginia and how much, as her mother, I
felt the need to be able to help her in any and every way possible, and
considered that my mother feels the same way about HER daughter- me- I was able
to relax into her free gifts of love with only gratitude. What a thrill, to be
able to surprise her with the wonderful news that we were going home!
I enjoyed
that surprise so much, and Virginia was still sleeping so peacefully in the
car, that I told Kurt we had to stop by Isaac’s school so I could surprise him
too. He and his friends were eating lunch, and were pleased to see me but so
accustomed to me being around, that they were not overwhelmed in any way! Dr.
Lilly, the teachers, and the other parents who were picking their children up,
however, were beyond surprised to see me, and overjoyed to hear about
Virginia’s wonderful progress. Many people came out to the car to peek through
the window at my sweet girl and we were just all tearful and jubilant.
After this
wonderful visit, we went home, and Virginia woke up to find herself at her very
own house. You cannot imagine how excited she was! She wanted to pet each kitty
cat, read every book, etc. We tried letting her down a bit, but she was not at
all steady on her feet, and could not walk more than part of the way across the
room without falling, which both Kurt and I found very nerve-wracking, so we
didn’t let her walk much. She didn’t mind, and was still quite happy to stay in
our arms.
One of the
first orders of business was to start the wound care of her dissolvable
stitches over the incisions. I asked Virginia if she would like a bath, and she
immediately began disrobing, albeit with more enthusiasm than skill! She played
in the bathtub at length, smiling and splashing, and then I shampooed her hair,
gently massaging the incision sites for the first time. The back of her head
had a different shape/feel for now, (maybe due to swelling?) but the difference
was only noticeable in profile when her hair was wet. The stitches felt knotty
and rough (but I must say, very neat, tidy and even- good job, Dr. Sacco!) in
contrast to her baby fine, haystack hair and the tender baby skin of her scalp.
Neither Virginia nor I particularly enjoyed this process, but compared to her
level of hysteria that I had witnessed every time someone wearing scrubs
entered the room (even without them touching her at all, much less hurting
her), her protests were not nearly as vehement, so I have to assume that my
touching the surgery sites felt more uncomfortable than truly painful.
We started
out alternating Tylenol and Motrin doses every three hours, and now have
gradually reduced that schedule down to only three doses per day of Motrin at
only a week post-op. Since we came home, Virginia’s balance has improved to
about the point where it was before surgery. She is still being somewhat
cautious and her movements are a bit stiff, but far less than I would have
anticipated, given that she had surgery only a week ago. Her appetite is still
a bit off from pre-surgery levels but not to a degree that is worrisome. We
even plan to attend church this Sunday, just less than two weeks after surgery,
if her wounds are healed enough that the possibility of infection is not too
risky for our comfort.
The three
most marked positive changes in her are:
1) Interestingly enough, she has begun
saying many more words, mimicking our language more, many words that she was
saying before have become more recognizable, and she has started singing two
identifiable tunes (Old McDonald Had a Farm and Twinkle Twinkle),
all in the last week. I didn’t at all expect this result from surgery, so
perhaps she is just no longer distracted by her intracranial pressure and all
this language has been just waiting to burst forth. For whatever reason it is
occurring now, we will take it!
2) Her demeanor is just indomitable.
She has always been quite ornery when she was feeling well- contrary and very
entertained by naughtiness! But she has also spent a lot of time sitting in my
lap sucking her thumb, and being clingy and subdued. Since coming home from the
hospital, she has only behaved in this way twice and each time was when she
needed pain meds. While still shy of being touched by strangers, she has been
really just effervescent in her energy and demeanor, and has even been friendlier
to visitors from the vantage point of my hip, smiling and interacting with them
much more freely. Her siblings are not quite sure how to manage these new
levels of enthusiasm for being a stinkpot!
3) I am so relieved and grateful to
announce that Virginia’s sleeping is extraordinarily better! For at least the
last six months, she has rarely slept without thrashing around, whimpering, and
sometimes shrieking, in her sleep, every few hours. “Bad nights” were when I
couldn’t comfort her and easily get her back to sleep and we had several hours
in the middle of the night of screaming. Normal nights, I was able to comfort
and soothe her back to sleep by helping her change her position, nursing and
comforting her. But for her to sleep peacefully and quietly without thrashing
or making a peep, for five and six hours at a time, has simply not happened,
almost ever, in recent memory- until now! Ever since two days out of the
hospital, Virginia has slept a stretch of at least five hours every night.
Although I have not been sleeping well still, it is no longer due to Virginia’s
being uncomfortable or in pain from sleeping. I have high hopes that as soon as
I finish journaling this experience, I will be able to “let it go” and stop
dreaming of brain surgery, hospitals, Dr. Sacco, and being faced with choices
of what I was willing (or not) to do to help Virginia, and be able to sleep
well, myself!
From
Thursday afternoon on, we have received many visitors, both expected and
unexpected (many bearing gifts, food, and in the case of Isaac’s preschool,
even a love offering from all his schoolmates!), phone calls, cards, and emails
of love and support. I am not exaggerating when I say that when I finish
writing this journal, I will be able to turn my attention to the over forty
thank you notes I need to write to all the many people who God has used to
bless, support and provide for us in material ways. I will write every single
one with joy and gratitude, and pray for every person as I write.
Unfortunately, I will never be able to individually answer (though I dearly
wish I could), all the people who have upheld us in their prayers and thoughts
and assured us of their emotional support. How wonderful it is to be, and to
know that we are so very loved! My heart has been warmed and touched, and my
life has been blessed by and through so many people that I cannot list them all
here. I must, however, specifically mention just a couple.
First, I
want to take this opportunity to thank my husband Kurt, for almost fifteen
years of marriage, and almost nine years of sharing the joys and challenges of
parenting with me. If I had to choose only one reason to praise my husband, it
would be to for the incalculable value and blessing I have, of being married to
a man I know I can rely upon to rise to any occasion required of him. I have
heard of couples whose marriages have crumpled under the stress of dealing with
a medical crisis in their child, and I marvel that my appreciation, love, and
respect for my husband and father of our children, has only grown-
exponentially- through this experience. I chose wisely when I married, by the
grace of God! (Those of you who knew me when, know that it was surely by the
grace of God and not that I was wise!) Thank you, Kurt, for being a husband and
father that I will give thanks for every day of my life.
I must also
say a special thanks to Dr. Sacco (“You’re my hero!”
“I am? Why?” Well, let me count the ways!), first and foremost for using his
excellent training and skill to treat my
Finally, in
reviewing all we prayed for at the beginning of this saga, you will understand
that I must give all glory and praise to God for the healing work He has done
in Virginia, and for His answers to all of our prayers- every one of
which was answered, by He “who is able
to do immeasurably more than all we ask or imagine.” I have a renewed awareness of, and a deeper feeling of singularity with,
Paul’s words to the Ephesians when he exhorts them, “May your roots go down deep into the soil of
God’s marvelous love. And may you have the power to understand, as all God’s
people should, how wide, how long, how high, and how deep His love really is.”
Like the
psalmist, I cry out from my heart:
1 Praise the LORD ,O my
soul; all my inmost being, praise his holy name.
2 Praise the LORD,O my soul, and forget not all his benefits-
3 who forgives all your sins and heals all your diseases,
4 who redeems your life from the pit and crowns you with love and
compassion,
5 who satisfies your desires with good things so that your youth is
renewed like the eagle's.
-Psalm
103:1-5
Amen!
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