Avalon's Army of Angels
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| July 16, 2008 Temporal Decompression #1 and MRI of spine |
Subject: July 16, 2008 - Admit to NCH, MRI, then surgery
We started the day at what my sister would call the butt-crack of dawn. Avalon and I were supposed to
be at the hospital at 5:45 a.m.. They got us at 6 a.m. I figured they'd get over it.
When you go in for surgery at Nationwide Children's, you have two possible places to go. The
Surgery Center handles only outpatient procedures, while the Surgery Unit handles outpatient as well
as surgeries that will require hospitalization. Basically, I think the Surgery Center is only for simple
things. Of the two, I far prefer Surgery Center. Avalon has been there dozens of times for her Lumbar
Punctures, because she has them done under general anesthesia. We LOVE the S.C. staff - they've
become very dear friends. (as you will see in a little while...)
At each location, you sign in then take a seat in a waiting area. The S.C.'s waiting room is gigantic. It
has loft ceilings, tons of space, comfy chairs. The Surgery Unit's check-in waiting area is small,
because you only wait there long enough to get registered. You don't return there during surgery.
The hospital has a very gracious lounge for the wait during an operation. I know this all seems rather
non-important...but I'm getting to it!
So, here we were, signed in and waiting in the Surgery Unit's registration area. It didn't take too long,
and we were called over to sign the mountain of papers, and receive our matching medical bracelets. I
also got my parent ID badge, to tell the world my daughter was being sliced and diced. For some
reason, I hate those things. I've never really figured that one out.
After registration, Avalon was playing with a couple of other clueless kids. I was trying to prop my
eyelids open, resting on one of the wall-benches. Then...it happened. BBBWAAAA!!!, BBBWAAAA!!!,
BBWAAA!!!! The fire alarm went off. Now then, calling this demonic device a "fire alarm" seems quite
inappropriate to me. I think ear-splitting-migraine-inducing-inhuman-instrument-of-torture would be
more accurate. Take anything you think you know about fire alarms...and chuck it straight out the
window. Heck, take how awful hospital alarms usually are - and toss that worthless knowledge. We've
been in the hospital halls several times during fire drills, but NEVER have I heard an alarm like the
Surgery Unit's and most definitely, I have never, ever, EVER been shut in a small, low ceiling,
lots-of-hard-surfaces-that-magnify-sound room with the fire alarm going off directly above my head!
AAAAAACCCCKKKKK............. I was utterly convinced there would be two people needing temporal
decompression by the time it ended. Count this, as Def con #1. There's more.
It was actually during the fire alarm that the nurse came out to get Avalon. Any hopes of relief from the
agony were quickly destroyed when I realized the tile floors and glass fronts of the pre-op rooms were
excellent sound magnifiers as well. And, of course, the hallway's fire alarm unit was right outside of
Avalon's room. Why wouldn't it be? AAACCCKKKK.....
When the cacophony finally ended and the nurse and I could hear each other, she began the pre-op
exam and the 20 Question game that basically replicates the pre-admission phone call and paperwork
I've already filled out. I totally understand that the replication is for safety reasons, its just rather
mind-numbing when you've done it as often as we have. One of these times, I may act like a deaf
mute just to muck with these people. Maybe I'll choose to speak Mandarin. Or maybe....I'll just be an
obstinate child and cross my arms and say, "NO", just to see what they do..... C'mon, I've got to find
my joy somewhere.
So, pre-op repetitiveness was over, and it was finally time for Avalon's favorite part, the Fishy Room.
The Surgery Unit has "Nemos" (clownfish cut-outs) on the walls, with their noses pointing the direction
you need to go. When you follow Nemo, he leads you to a wonderful little ocean room - filled to the
brim with silly toys/gifts. The children are allowed to pick their own owie toy. Avalon LOVES this
place!! Each visit leads to the most serious "shopping" and decision-making you could imagine. She
ponders, studies, fingers, and muses over every single thing in the room. This time was excruciating.
She desperately wanted two toys, a clear squishy ball filled with worms - and a craft kit to make a
stickerific window cling. It was agonizing having to choose. She decided the window cling looked like
lots of fun to do during her stay - so it won. As we left the room, her nurse noticed she was glum.
Avalon explained about the horrible dilemma, and why she chose the craft kit - but that she really did
like that worm ball. Her nurse grinned, winked, and said, "Well, technically, you're having two
procedures today - an MRI and surgery...I think that means two toys are in order." Viola'! A happy
little girl bounced her way back to her room, squishing a wad of worms like it was her job.
No too long after we made it back to the room, a dear, smiling face appeared in the doorway. Our
friend, Doug, made another pre-op visit. He's such a ray of sunshine! Avalon grins like a monkey
every time he shows up. He'd better watch out, she's going to anticipate him as much as she does the
Fishy Room! As per usual, Doug spoiled Avalon rotten. He brought her this goofy toy that has
absolutely no purpose, but makes everyone laugh who sees it. Its a wand, with a slinky on the end of
it, and an eyeball attached to the end of the slinky. When you push a button, the bottom of the slinky
rotates - making the eyeball dance. Its the most ridiculous little hunk of plastic I've ever seen - and its
hysterical!
Very soon after Doug came, it was time to head down for Avalon's MRI. Dr. Kosnik ordered the MRI to
check Avalon's spine to make sure it wasn't still leaking spinal fluid. We were pretty sure it had sealed,
but he wanted to be absolutely certain before heading into surgery.
This MRI was to be a test. Dr. Kosnik requested that Avalon try to do it without sedation. He said, he
thinks she'll have to have several more through the years, and if she could learn to do it by herself - it
would make it a lot easier on her. MRI's require that a patient stay perfectly still....for several minutes
to several hours, so this request was not necessarily an easy one. Avalon's MRI was of her lower
spine - so I think it was 20-30 min or so. I'd actually have to ask Doug, who was kind enough to wait
for us while she did it. The entire thing seemed like an eternity, but I actually have no idea about time
frame.
Usually, children are sedated to be able to tolerate the MRI. The noise in the room is deafening.
Anyone in there has to wear earplugs - and I can testify - its still excruciatingly loud. Not to mention,
the patient is in a small tube. Seriously, just watching her go in it made my chest tight. (I'm horribly
claustrophobic) Oh, and if all of this doesn't sound joyful enough, Avalon had to be full-body strapped
down. From her shoulders to her rear, she was wrapped tightly, with her arms by her sides, unable to
move. She could see nothing but the inside of the tube, and only hear the nurse's voice, not mine, it
was too loud in the room.
Mind you, the nurse talked to her often. The nurse was kind, gentle, encouraging, and honest about
what was coming, and how long each cycle would take. She continuously asked Avalon if she was OK,
and reassured Avalon that I was, indeed, in the room with her. Avalon never complained, she always
answered, "I'm fine." What we found when we pulled her out - is the best explanation I will ever be able
to give you about how Avalon handles all of this insanity.
When we pulled Avalon from the tube, tears were streaming down her face. It was obvious she'd been
crying the entire time, her eyes were red and puffy. However, she had never, not even for a second,
hinted that she was anything but OK. She knew she had to get through it, and like all the needle
sticks, surgeries, chemo, and painful exams before this...she just muscled through - not one complaint.
The nurse was horrified. She said, "Avalon, you've been crying! You never told me you were scared.
I'm so sorry - you could have told me. Are you OK?"
Avalon simply answered, "I'm not crying. I just have something in my eye."
That, my friends, is Avalon. She's been piled sky high with bleck - and still fights to maintain her
"image" and dignity. And yes, the nurse and I both had tears in our eyes. The nurse went on to give
her one of every bribe toy they had: a sticker, a bracelet, a tattoo, "Oobie" eyes, and a small stuffed
dog. Quite the haul by hospital standards...but not even close to what she deserved.
And if you didn't figure it out - the unbelievably loud MRI is to be considered Def con #2. And yet,
there's more...
Post MRI, we headed back to the room for the 3 hour wait before surgery. Joy, rapture. Three hours,
in the early morning, with a hungry, sleep-deprived 5 year old. Oo hoo, it is to laugh.... Doug stayed
with us for quite a while. He's a fantastic distraction. However, eventually, he did have to return to his
normal life - and head off into the great big world. I talked to Nick a couple of times, telling him of OR
time, and how long he had to be able to drop the other kiddos off with our beloved friend, Marnita,
then get his keester to the Big House.
Mostly, we just watched TV and monkeyed with Avalon's new toys.
Then it happened. Def con #3. That #$@&*%^! fire alarm went off again!! Seven minutes, folks. I
timed it on the room's clock. Seven minutes......what flippin' fire alarm drill needs to happen for seven
minutes?! AAAACKKKKKKK!!
Nick arrived in the middle of the fire alarm. He was holding his ears (as was the entire human
population of the hospital) and whining. When the alarm ended, he agreed with me that the Surgery
Unit was miserable compared to the rest of the hospital. You see, he'd been walking through the
hallways when it started. He only ended in the unit. He wasn't there the whoooole time. He wasn't
there for the first one He only came in for the last 2 minutes. He dared to then complain he was sure
it was going to give him a headache....
I contemplated homicide.
He recanted.
Eventually, the anesthesiologist came in to do his pre-op exam and question session. We were
disappointed to see someone we didn't know, but he was nice enough. As he was finishing, the
neurosurgery residents and nurse practitioner came in. As I chatted with the residents, Nick and the
NP discussed Avalon's shunt. Sure enough, the MRI had changed its setting from .5 to 1.5.
Thankfully, the NP had brought the equipment with her to change it back. Criminy, the thing isn't doing
much at .5 - I can't imagine how miserable she'd be if it was closed down three more notches!
I had never met the residents before, but they were wonderful. Given my druthers, (is that even a
word?) I'd adopt the one resident as Avalon's permanent neurosurgeon. I think he has 4 more years
of residency left, but he's brilliant, kind, personal, and very helpful. If I could design a neurosurgeon -
I'm pretty sure it would be him. If there is any justice or kindness in the universe, either he or the
lovely female resident who saved Avalon in the last surgery - will someday be at our hospital as full
attending surgeons. I'll do my best to advocate for it.
The resident was fully aware of Avalon's recent nightmare, and everything that entailed. He not only
grinned at a few comments we made, he joked about a portion of the day's events. In all, he handled
everything with grace and humor, and left us feeling very comfortable with him. As we were chatting,
"The Man" (Dr. Kosnik) stepped into the doorway. He truly is a man of few words. He shook hands
with Nick, asked Avalon if she was OK, and headed out. Its funny, I really thought he'd drive me crazy,
but I'm kind of finding his quirks humorous.
Nick agreed with me, Dr. Kosnik remarkably resembles Nick's father. Dr. Kosnik looks more like
Chuck, than Chuck's own brother does. I've wondered if Dr. K thinks I'm sweet on him. I'm always
staring at him. I can't get past the resemblance. Funny enough, they even have similar mannerisms.
Finally, it came time to take "the walk". Parents can walk with their children, back to the OR doors. In
front of the OR suites, you say goodbye, and head into the surgery waiting area. The last time we did
this, my mother's intuition was on high alert. I was nauseous, my chest was so tight I could barely
breathe, and there was literally screaming inside my head. It was the most difficult moment I've had in
her medical treatment.
This time, my heart, chest, and mind were calm. I knew we had made the right decision, because I
wasn't panicky. Avalon, however, was. Avalon used to cry whenever they took her to OR for an LP.
But, she hasn't done that in years. As she gets wheeled away, she's usually chatting amicably with the
nurse taking her - and barely wants to kiss us goodbye. This time, she was in tears. These weren't
manipulative tears, these were sheer terror. She's been to Hell and back recently, and I think it finally
hit her. It was agonizing walking away. Not because I didn't trust the surgeon, but because my baby
was terrified, and there wasn't one thing I could do to fix it. Yes, I think my heart shattered.
Once in the surgery waiting area, we began the ritual of distracting ourselves. The waiting area is a
giant lounge. There are comfy chairs, couches, fish tanks, a television, a small concession area, and
the almighty important, monitor. Each child has a number. As the child progresses through the
surgical stations, their initials and number are highlighted by a different color. Green means they are
still in OR. I believe pink is PACU, yellow is recovery, etc. When you check into the waiting area, you
are given a paper with your child's number, and the description of each of the steps of the process.
One of my favorite distraction techniques is the lovely woman who runs the waiting area. She used to
be the secretary for one of my NCH Foundation friends. We've known each other since early in
Avalon's diagnosis. She's always good for a giant hug (or 6) and lots of friendly chatting and catching
up. Its a great blessing to walk into that room and be greeted by a friend.
Our other favorite distraction is the coffee machine. Coffee is free to the parents of surgery patients.
There is a decadent French Vanilla Cafe setting on the coffee maker, that is seriously to-die-for. If it
wasn't for the fact that the sugar in it gives me a hideous headache...I could bathe in the stuff. Listen,
I've learned to look for the positives in life. If a cup of sweet joe makes me look forward to walking in
that room - I'll take it for what it is, survival.
The next two hours were spent quickly transferring email addresses to my yahoo account, then in idle
conversation and cross stitching comfort. When Avalon is in a procedure, or in-house, I become a
cross stitching fool. The rest of the time, I can't manage to set aside 5 minutes for 10 stitches. But put
me in a high stress environment, and I'm psychotic about my little x's. Hey, its a better coping
mechanism than my over-eating of comfort foods! Now then, if I could just manage to embrace it as
my only coping mechanism...maybe I wouldn't gain weight with every medical setback. Ahh....it is to
laugh.
Eventually, the hours passed, and I began to panic. I don't know why, but I presume it has to do with
the last fiasco. I can shamelessly admit I was working on a full-blown panic attack. They're ugly
beasts, those attacks. They sneak up on you, and completely destroy any semblance of calm. Nick
was doing his best to help, but eventually, you find yourself wanting to bitch-slap anyone who thinks
they know what to say to you. That's where I was when Dr. K. came in...
Dr. K assured us that everything went perfectly, just as expected. Then he nonchalantly added that
Avalon would spend the night in PICU. We flipped. Nick and I both stammered something about
PICU? What?!! Dr. K. said he wanted her closely monitored, then she'd be moved to the floor. We
were as horrified, as he was calm. Yet, even in the midst of our panic, we had to laugh. Dr. K. really is
his own man. The door the docs enter into the waiting area, automatically locks behind them. They
need their hospital IDs to open it. (its to keep parents from wandering out the wrong door - to the OR
hallway) Apparently, this concept irritates Dr. K. As we sat in our PICU stupor, we had to laugh. Out
strolled Dr. K, calmly pulling his surgical mask off of the door lock, as he walked through the door. He
doesn't "do" the badge thing, he jimmies the lock with his mask as he enters. You have got to love a
guy who makes the system work his way.
I desperately wanted to send out a quick "She's OK" email to everyone, but couldn't. A parent decided
he needed to surf the internet more than anyone else may need to contact people. As Nick and I
discussed it, the surfer's wife (who was sitting next to Nick) got up and walked over to her husband.
We figured she was going to remind him of the time limits. No, no, mon ami...she simply traded places
with him, and began her own time wasting. After waiting an eternity, I tried going down to the Family
Resource Center to send an email from there. Of course, the FRC computers would pick that very day
to malfunction. Arghhh....
I traipsed back up to the waiting room, in a less-than-stellar mood. When I got there, sure enough Mr.
and Mrs. Selfish-pants were off the computer, but someone else had already sat down. I nearly
croaked. Thankfully, there are kind, thoughtful people left in the world who can completely override
the actions of selfish-pants. When the people at the computer saw me, they came and offered the
computer to me - they said they knew I'd been waiting. How sweet is that? I promised to only take a
few minutes, no eternal selfish-pants surfing.
As I began typing the quickie facts, I could feel the panic returning. I'd had a momentary respite from
it, thanks to anger at the Selfish-pants duo and frustration at the FRC computers. Yet it did manage to
find me, and extract revenge for temporarily forsaking it.
About the time panic was starting to pummel me, three beautiful warriors arrived to beat it back into
permanent submission. My warriors were part of our beloved Surgery Center family. These three
glorious women, Sarah, Tina, and Suzi, came on their lunch time to check on Avalon, and give us the
hugs they knew we'd need. Each of them hugged me while I finished typing, and let me sob like it was
my job. They hugged and smooched on Nick, with all the love of old family friends. When I finished
the email, they hugged some more - and truly squeezed about 85% of the stress right out of me. Then
they did what they do best...they made me laugh.
Before I knew it, I was in complete hysterics. These lovely ladies are as goofy funny, as they are dear.
We hooted and hollered, laughed and guffawed. I'm quite sure we made the spectacle of ourselves
in the notoriously-serious surgery waiting area. Ask me if I care? Those giggles were worth 10,000
times what any anti-anxiety med would have been. When they had to fly back to work, I couldn't
believe the difference in myself. I realized I was actually smiling, enjoying life again. It was like a 200
ton weight had been ripped from my shoulders, and I'd suddenly been taught how to walk on air.
Never, ever, even for a millisecond, doubt the truth of "Laughter is the Best Medicine". Giggling like a
fool with people I love was priceless. They gave me a better gift than I could have ever dreamed up on
my own.
Not too long after our gigglefest, Nick and I were sent up to PICU to meet Avalon. Because of some
crossed communications, she actually beat us to the unit. When we checked in at the ICU waiting area
(serves NICU, PICU, CICU), they were thrilled to see us, and said she was waiting for us. We were met
in the hall by a nurse who said Avalon was looking for us. We assumed she was scared/sad/etc.
Wow, were we wrong!
As we walked into the room, we were greeted by laughing nurses and docs. The attending was
snickering as he introduced himself, and the nurses were battling over who would get to keep Avalon.
They were completely smitten with her, before we even got there! Apparently, she wasn't nearly as
concerned with seeing us, as she was with arranging for food. She had them in hysterics because she
was bartering for food...now. She had also introduced herself, said it was nice to meet them, and
asked them lots of questions. Not exactly the typical PICU patient. It was great to see my happy,
friendly, little bug charming the staff like normal. That's the Avalon I'm used to.
The rest of the day was pretty uneventful. Lots of vital signs, pain medication, and hours upon hours
of arguing with a VERY hungry little girl, that PICU has rules about food and anesthesia. By evening, I
thought Avalon was going to start searching for weaponry, if they didn't let her eat. Eventually they
caved, and she ate like the post-op champ she is. The attending was sure to come and chat with her
a few more times, just for fun.
Mainly, the first night was spent learning to get over our PICU paranoia. They are wonderful, kind,
VERY conscientious people who care deeply about their work, but still have grand senses of humor.
We did, however, have a rather rude awakening to PICU particulars. It seems that some Nazi-wannabe
had their hand in choosing PICU furniture. There is no bed! The "cute" (read that with dripping
sarcasm) little loveseat is just that - a loveseat. It DOES NOT pull out into a bed. Of course, the arms
of said loveseat look exactly like those of the chinese-torture-devices on the floors that do, actually,
pull out into beds. So, as Nick and I are herniating ourselves yanking on the hunk-o-crap, a nurse had
to come in and drop the bomb that this particular "couch" (I'm sorry, couches are 6 feet long, not 4!)
didn't make into a bed. But, "there are some rooms where we're testing pull-outs. This just isn't one of
them." Fan-friggin'-tastic. Its bad enough you just told me I'm doomed to sleeping purgatory, you just
had to make it worse by letting me know somewhere on the unit someone might be sleeping? That was
unnecessary cruelty....
Eventually, my 1 1/2 hours of sleep from the night before surgery, caught up to me. I had no choice
but to attempt to catch a few elusive zzzzzz's. Nick headed home to pick up munchkins from Marnita,
and I began the Battle of the Bend. To fit myself onto said "couch", I had to fold my knees at a 90
degree angle, and wedge them at the end. All I can say is its a good thing I was past exhausted, any
less sleep deprivation, and I'd never have made it. My rest did not come without a price, however.
After several hours of being forced into an unnatural, unrelenting bend, my knees decided to revolt.
When I woke up the next morning and attempted to stand up...I instantly sucked floor. It would seem
that my knees are opposed to that particular position for that extended length of time. Duly noted.
I hope you enjoy the pre-op pictures below. ;-)
We started the day at what my sister would call the butt-crack of dawn. Avalon and I were supposed to
be at the hospital at 5:45 a.m.. They got us at 6 a.m. I figured they'd get over it.
When you go in for surgery at Nationwide Children's, you have two possible places to go. The
Surgery Center handles only outpatient procedures, while the Surgery Unit handles outpatient as well
as surgeries that will require hospitalization. Basically, I think the Surgery Center is only for simple
things. Of the two, I far prefer Surgery Center. Avalon has been there dozens of times for her Lumbar
Punctures, because she has them done under general anesthesia. We LOVE the S.C. staff - they've
become very dear friends. (as you will see in a little while...)
At each location, you sign in then take a seat in a waiting area. The S.C.'s waiting room is gigantic. It
has loft ceilings, tons of space, comfy chairs. The Surgery Unit's check-in waiting area is small,
because you only wait there long enough to get registered. You don't return there during surgery.
The hospital has a very gracious lounge for the wait during an operation. I know this all seems rather
non-important...but I'm getting to it!
So, here we were, signed in and waiting in the Surgery Unit's registration area. It didn't take too long,
and we were called over to sign the mountain of papers, and receive our matching medical bracelets. I
also got my parent ID badge, to tell the world my daughter was being sliced and diced. For some
reason, I hate those things. I've never really figured that one out.
After registration, Avalon was playing with a couple of other clueless kids. I was trying to prop my
eyelids open, resting on one of the wall-benches. Then...it happened. BBBWAAAA!!!, BBBWAAAA!!!,
BBWAAA!!!! The fire alarm went off. Now then, calling this demonic device a "fire alarm" seems quite
inappropriate to me. I think ear-splitting-migraine-inducing-inhuman-instrument-of-torture would be
more accurate. Take anything you think you know about fire alarms...and chuck it straight out the
window. Heck, take how awful hospital alarms usually are - and toss that worthless knowledge. We've
been in the hospital halls several times during fire drills, but NEVER have I heard an alarm like the
Surgery Unit's and most definitely, I have never, ever, EVER been shut in a small, low ceiling,
lots-of-hard-surfaces-that-magnify-sound room with the fire alarm going off directly above my head!
AAAAAACCCCKKKKK............. I was utterly convinced there would be two people needing temporal
decompression by the time it ended. Count this, as Def con #1. There's more.
It was actually during the fire alarm that the nurse came out to get Avalon. Any hopes of relief from the
agony were quickly destroyed when I realized the tile floors and glass fronts of the pre-op rooms were
excellent sound magnifiers as well. And, of course, the hallway's fire alarm unit was right outside of
Avalon's room. Why wouldn't it be? AAACCCKKKK.....
When the cacophony finally ended and the nurse and I could hear each other, she began the pre-op
exam and the 20 Question game that basically replicates the pre-admission phone call and paperwork
I've already filled out. I totally understand that the replication is for safety reasons, its just rather
mind-numbing when you've done it as often as we have. One of these times, I may act like a deaf
mute just to muck with these people. Maybe I'll choose to speak Mandarin. Or maybe....I'll just be an
obstinate child and cross my arms and say, "NO", just to see what they do..... C'mon, I've got to find
my joy somewhere.
So, pre-op repetitiveness was over, and it was finally time for Avalon's favorite part, the Fishy Room.
The Surgery Unit has "Nemos" (clownfish cut-outs) on the walls, with their noses pointing the direction
you need to go. When you follow Nemo, he leads you to a wonderful little ocean room - filled to the
brim with silly toys/gifts. The children are allowed to pick their own owie toy. Avalon LOVES this
place!! Each visit leads to the most serious "shopping" and decision-making you could imagine. She
ponders, studies, fingers, and muses over every single thing in the room. This time was excruciating.
She desperately wanted two toys, a clear squishy ball filled with worms - and a craft kit to make a
stickerific window cling. It was agonizing having to choose. She decided the window cling looked like
lots of fun to do during her stay - so it won. As we left the room, her nurse noticed she was glum.
Avalon explained about the horrible dilemma, and why she chose the craft kit - but that she really did
like that worm ball. Her nurse grinned, winked, and said, "Well, technically, you're having two
procedures today - an MRI and surgery...I think that means two toys are in order." Viola'! A happy
little girl bounced her way back to her room, squishing a wad of worms like it was her job.
No too long after we made it back to the room, a dear, smiling face appeared in the doorway. Our
friend, Doug, made another pre-op visit. He's such a ray of sunshine! Avalon grins like a monkey
every time he shows up. He'd better watch out, she's going to anticipate him as much as she does the
Fishy Room! As per usual, Doug spoiled Avalon rotten. He brought her this goofy toy that has
absolutely no purpose, but makes everyone laugh who sees it. Its a wand, with a slinky on the end of
it, and an eyeball attached to the end of the slinky. When you push a button, the bottom of the slinky
rotates - making the eyeball dance. Its the most ridiculous little hunk of plastic I've ever seen - and its
hysterical!
Very soon after Doug came, it was time to head down for Avalon's MRI. Dr. Kosnik ordered the MRI to
check Avalon's spine to make sure it wasn't still leaking spinal fluid. We were pretty sure it had sealed,
but he wanted to be absolutely certain before heading into surgery.
This MRI was to be a test. Dr. Kosnik requested that Avalon try to do it without sedation. He said, he
thinks she'll have to have several more through the years, and if she could learn to do it by herself - it
would make it a lot easier on her. MRI's require that a patient stay perfectly still....for several minutes
to several hours, so this request was not necessarily an easy one. Avalon's MRI was of her lower
spine - so I think it was 20-30 min or so. I'd actually have to ask Doug, who was kind enough to wait
for us while she did it. The entire thing seemed like an eternity, but I actually have no idea about time
frame.
Usually, children are sedated to be able to tolerate the MRI. The noise in the room is deafening.
Anyone in there has to wear earplugs - and I can testify - its still excruciatingly loud. Not to mention,
the patient is in a small tube. Seriously, just watching her go in it made my chest tight. (I'm horribly
claustrophobic) Oh, and if all of this doesn't sound joyful enough, Avalon had to be full-body strapped
down. From her shoulders to her rear, she was wrapped tightly, with her arms by her sides, unable to
move. She could see nothing but the inside of the tube, and only hear the nurse's voice, not mine, it
was too loud in the room.
Mind you, the nurse talked to her often. The nurse was kind, gentle, encouraging, and honest about
what was coming, and how long each cycle would take. She continuously asked Avalon if she was OK,
and reassured Avalon that I was, indeed, in the room with her. Avalon never complained, she always
answered, "I'm fine." What we found when we pulled her out - is the best explanation I will ever be able
to give you about how Avalon handles all of this insanity.
When we pulled Avalon from the tube, tears were streaming down her face. It was obvious she'd been
crying the entire time, her eyes were red and puffy. However, she had never, not even for a second,
hinted that she was anything but OK. She knew she had to get through it, and like all the needle
sticks, surgeries, chemo, and painful exams before this...she just muscled through - not one complaint.
The nurse was horrified. She said, "Avalon, you've been crying! You never told me you were scared.
I'm so sorry - you could have told me. Are you OK?"
Avalon simply answered, "I'm not crying. I just have something in my eye."
That, my friends, is Avalon. She's been piled sky high with bleck - and still fights to maintain her
"image" and dignity. And yes, the nurse and I both had tears in our eyes. The nurse went on to give
her one of every bribe toy they had: a sticker, a bracelet, a tattoo, "Oobie" eyes, and a small stuffed
dog. Quite the haul by hospital standards...but not even close to what she deserved.
And if you didn't figure it out - the unbelievably loud MRI is to be considered Def con #2. And yet,
there's more...
Post MRI, we headed back to the room for the 3 hour wait before surgery. Joy, rapture. Three hours,
in the early morning, with a hungry, sleep-deprived 5 year old. Oo hoo, it is to laugh.... Doug stayed
with us for quite a while. He's a fantastic distraction. However, eventually, he did have to return to his
normal life - and head off into the great big world. I talked to Nick a couple of times, telling him of OR
time, and how long he had to be able to drop the other kiddos off with our beloved friend, Marnita,
then get his keester to the Big House.
Mostly, we just watched TV and monkeyed with Avalon's new toys.
Then it happened. Def con #3. That #$@&*%^! fire alarm went off again!! Seven minutes, folks. I
timed it on the room's clock. Seven minutes......what flippin' fire alarm drill needs to happen for seven
minutes?! AAAACKKKKKKK!!
Nick arrived in the middle of the fire alarm. He was holding his ears (as was the entire human
population of the hospital) and whining. When the alarm ended, he agreed with me that the Surgery
Unit was miserable compared to the rest of the hospital. You see, he'd been walking through the
hallways when it started. He only ended in the unit. He wasn't there the whoooole time. He wasn't
there for the first one He only came in for the last 2 minutes. He dared to then complain he was sure
it was going to give him a headache....
I contemplated homicide.
He recanted.
Eventually, the anesthesiologist came in to do his pre-op exam and question session. We were
disappointed to see someone we didn't know, but he was nice enough. As he was finishing, the
neurosurgery residents and nurse practitioner came in. As I chatted with the residents, Nick and the
NP discussed Avalon's shunt. Sure enough, the MRI had changed its setting from .5 to 1.5.
Thankfully, the NP had brought the equipment with her to change it back. Criminy, the thing isn't doing
much at .5 - I can't imagine how miserable she'd be if it was closed down three more notches!
I had never met the residents before, but they were wonderful. Given my druthers, (is that even a
word?) I'd adopt the one resident as Avalon's permanent neurosurgeon. I think he has 4 more years
of residency left, but he's brilliant, kind, personal, and very helpful. If I could design a neurosurgeon -
I'm pretty sure it would be him. If there is any justice or kindness in the universe, either he or the
lovely female resident who saved Avalon in the last surgery - will someday be at our hospital as full
attending surgeons. I'll do my best to advocate for it.
The resident was fully aware of Avalon's recent nightmare, and everything that entailed. He not only
grinned at a few comments we made, he joked about a portion of the day's events. In all, he handled
everything with grace and humor, and left us feeling very comfortable with him. As we were chatting,
"The Man" (Dr. Kosnik) stepped into the doorway. He truly is a man of few words. He shook hands
with Nick, asked Avalon if she was OK, and headed out. Its funny, I really thought he'd drive me crazy,
but I'm kind of finding his quirks humorous.
Nick agreed with me, Dr. Kosnik remarkably resembles Nick's father. Dr. Kosnik looks more like
Chuck, than Chuck's own brother does. I've wondered if Dr. K thinks I'm sweet on him. I'm always
staring at him. I can't get past the resemblance. Funny enough, they even have similar mannerisms.
Finally, it came time to take "the walk". Parents can walk with their children, back to the OR doors. In
front of the OR suites, you say goodbye, and head into the surgery waiting area. The last time we did
this, my mother's intuition was on high alert. I was nauseous, my chest was so tight I could barely
breathe, and there was literally screaming inside my head. It was the most difficult moment I've had in
her medical treatment.
This time, my heart, chest, and mind were calm. I knew we had made the right decision, because I
wasn't panicky. Avalon, however, was. Avalon used to cry whenever they took her to OR for an LP.
But, she hasn't done that in years. As she gets wheeled away, she's usually chatting amicably with the
nurse taking her - and barely wants to kiss us goodbye. This time, she was in tears. These weren't
manipulative tears, these were sheer terror. She's been to Hell and back recently, and I think it finally
hit her. It was agonizing walking away. Not because I didn't trust the surgeon, but because my baby
was terrified, and there wasn't one thing I could do to fix it. Yes, I think my heart shattered.
Once in the surgery waiting area, we began the ritual of distracting ourselves. The waiting area is a
giant lounge. There are comfy chairs, couches, fish tanks, a television, a small concession area, and
the almighty important, monitor. Each child has a number. As the child progresses through the
surgical stations, their initials and number are highlighted by a different color. Green means they are
still in OR. I believe pink is PACU, yellow is recovery, etc. When you check into the waiting area, you
are given a paper with your child's number, and the description of each of the steps of the process.
One of my favorite distraction techniques is the lovely woman who runs the waiting area. She used to
be the secretary for one of my NCH Foundation friends. We've known each other since early in
Avalon's diagnosis. She's always good for a giant hug (or 6) and lots of friendly chatting and catching
up. Its a great blessing to walk into that room and be greeted by a friend.
Our other favorite distraction is the coffee machine. Coffee is free to the parents of surgery patients.
There is a decadent French Vanilla Cafe setting on the coffee maker, that is seriously to-die-for. If it
wasn't for the fact that the sugar in it gives me a hideous headache...I could bathe in the stuff. Listen,
I've learned to look for the positives in life. If a cup of sweet joe makes me look forward to walking in
that room - I'll take it for what it is, survival.
The next two hours were spent quickly transferring email addresses to my yahoo account, then in idle
conversation and cross stitching comfort. When Avalon is in a procedure, or in-house, I become a
cross stitching fool. The rest of the time, I can't manage to set aside 5 minutes for 10 stitches. But put
me in a high stress environment, and I'm psychotic about my little x's. Hey, its a better coping
mechanism than my over-eating of comfort foods! Now then, if I could just manage to embrace it as
my only coping mechanism...maybe I wouldn't gain weight with every medical setback. Ahh....it is to
laugh.
Eventually, the hours passed, and I began to panic. I don't know why, but I presume it has to do with
the last fiasco. I can shamelessly admit I was working on a full-blown panic attack. They're ugly
beasts, those attacks. They sneak up on you, and completely destroy any semblance of calm. Nick
was doing his best to help, but eventually, you find yourself wanting to bitch-slap anyone who thinks
they know what to say to you. That's where I was when Dr. K. came in...
Dr. K assured us that everything went perfectly, just as expected. Then he nonchalantly added that
Avalon would spend the night in PICU. We flipped. Nick and I both stammered something about
PICU? What?!! Dr. K. said he wanted her closely monitored, then she'd be moved to the floor. We
were as horrified, as he was calm. Yet, even in the midst of our panic, we had to laugh. Dr. K. really is
his own man. The door the docs enter into the waiting area, automatically locks behind them. They
need their hospital IDs to open it. (its to keep parents from wandering out the wrong door - to the OR
hallway) Apparently, this concept irritates Dr. K. As we sat in our PICU stupor, we had to laugh. Out
strolled Dr. K, calmly pulling his surgical mask off of the door lock, as he walked through the door. He
doesn't "do" the badge thing, he jimmies the lock with his mask as he enters. You have got to love a
guy who makes the system work his way.
I desperately wanted to send out a quick "She's OK" email to everyone, but couldn't. A parent decided
he needed to surf the internet more than anyone else may need to contact people. As Nick and I
discussed it, the surfer's wife (who was sitting next to Nick) got up and walked over to her husband.
We figured she was going to remind him of the time limits. No, no, mon ami...she simply traded places
with him, and began her own time wasting. After waiting an eternity, I tried going down to the Family
Resource Center to send an email from there. Of course, the FRC computers would pick that very day
to malfunction. Arghhh....
I traipsed back up to the waiting room, in a less-than-stellar mood. When I got there, sure enough Mr.
and Mrs. Selfish-pants were off the computer, but someone else had already sat down. I nearly
croaked. Thankfully, there are kind, thoughtful people left in the world who can completely override
the actions of selfish-pants. When the people at the computer saw me, they came and offered the
computer to me - they said they knew I'd been waiting. How sweet is that? I promised to only take a
few minutes, no eternal selfish-pants surfing.
As I began typing the quickie facts, I could feel the panic returning. I'd had a momentary respite from
it, thanks to anger at the Selfish-pants duo and frustration at the FRC computers. Yet it did manage to
find me, and extract revenge for temporarily forsaking it.
About the time panic was starting to pummel me, three beautiful warriors arrived to beat it back into
permanent submission. My warriors were part of our beloved Surgery Center family. These three
glorious women, Sarah, Tina, and Suzi, came on their lunch time to check on Avalon, and give us the
hugs they knew we'd need. Each of them hugged me while I finished typing, and let me sob like it was
my job. They hugged and smooched on Nick, with all the love of old family friends. When I finished
the email, they hugged some more - and truly squeezed about 85% of the stress right out of me. Then
they did what they do best...they made me laugh.
Before I knew it, I was in complete hysterics. These lovely ladies are as goofy funny, as they are dear.
We hooted and hollered, laughed and guffawed. I'm quite sure we made the spectacle of ourselves
in the notoriously-serious surgery waiting area. Ask me if I care? Those giggles were worth 10,000
times what any anti-anxiety med would have been. When they had to fly back to work, I couldn't
believe the difference in myself. I realized I was actually smiling, enjoying life again. It was like a 200
ton weight had been ripped from my shoulders, and I'd suddenly been taught how to walk on air.
Never, ever, even for a millisecond, doubt the truth of "Laughter is the Best Medicine". Giggling like a
fool with people I love was priceless. They gave me a better gift than I could have ever dreamed up on
my own.
Not too long after our gigglefest, Nick and I were sent up to PICU to meet Avalon. Because of some
crossed communications, she actually beat us to the unit. When we checked in at the ICU waiting area
(serves NICU, PICU, CICU), they were thrilled to see us, and said she was waiting for us. We were met
in the hall by a nurse who said Avalon was looking for us. We assumed she was scared/sad/etc.
Wow, were we wrong!
As we walked into the room, we were greeted by laughing nurses and docs. The attending was
snickering as he introduced himself, and the nurses were battling over who would get to keep Avalon.
They were completely smitten with her, before we even got there! Apparently, she wasn't nearly as
concerned with seeing us, as she was with arranging for food. She had them in hysterics because she
was bartering for food...now. She had also introduced herself, said it was nice to meet them, and
asked them lots of questions. Not exactly the typical PICU patient. It was great to see my happy,
friendly, little bug charming the staff like normal. That's the Avalon I'm used to.
The rest of the day was pretty uneventful. Lots of vital signs, pain medication, and hours upon hours
of arguing with a VERY hungry little girl, that PICU has rules about food and anesthesia. By evening, I
thought Avalon was going to start searching for weaponry, if they didn't let her eat. Eventually they
caved, and she ate like the post-op champ she is. The attending was sure to come and chat with her
a few more times, just for fun.
Mainly, the first night was spent learning to get over our PICU paranoia. They are wonderful, kind,
VERY conscientious people who care deeply about their work, but still have grand senses of humor.
We did, however, have a rather rude awakening to PICU particulars. It seems that some Nazi-wannabe
had their hand in choosing PICU furniture. There is no bed! The "cute" (read that with dripping
sarcasm) little loveseat is just that - a loveseat. It DOES NOT pull out into a bed. Of course, the arms
of said loveseat look exactly like those of the chinese-torture-devices on the floors that do, actually,
pull out into beds. So, as Nick and I are herniating ourselves yanking on the hunk-o-crap, a nurse had
to come in and drop the bomb that this particular "couch" (I'm sorry, couches are 6 feet long, not 4!)
didn't make into a bed. But, "there are some rooms where we're testing pull-outs. This just isn't one of
them." Fan-friggin'-tastic. Its bad enough you just told me I'm doomed to sleeping purgatory, you just
had to make it worse by letting me know somewhere on the unit someone might be sleeping? That was
unnecessary cruelty....
Eventually, my 1 1/2 hours of sleep from the night before surgery, caught up to me. I had no choice
but to attempt to catch a few elusive zzzzzz's. Nick headed home to pick up munchkins from Marnita,
and I began the Battle of the Bend. To fit myself onto said "couch", I had to fold my knees at a 90
degree angle, and wedge them at the end. All I can say is its a good thing I was past exhausted, any
less sleep deprivation, and I'd never have made it. My rest did not come without a price, however.
After several hours of being forced into an unnatural, unrelenting bend, my knees decided to revolt.
When I woke up the next morning and attempted to stand up...I instantly sucked floor. It would seem
that my knees are opposed to that particular position for that extended length of time. Duly noted.
I hope you enjoy the pre-op pictures below. ;-)
| Hamming it up for silly Mommy. |
| The goofy eyeball toy I described. |
| Am I cute..... |
| ...or what? |
| Check out those freckles! |
| This is the hair growth from May 28th. And yes, she was totally bummed to be losing it again. |
| Incision from last operation on May 28, 2008. See how its not healing nicely? That's the skin integrity that Dr. K is worried about. |
| Direct translation: "Back off mom! I'm bored, hungry, sleepy, and downright grumpy...." |
| Behind the ear is an incision site from May 28th. The neck is the suture site from the misguided tool. |