Our
Journey:
Journey:
Avalon's Army of Angels
| August 2, 2008 Home again, home again, jiggety jig... |
As with most other mornings, I woke up with a crooked,
bent, and mangled everything. Avalon fairs much better
in the hospital. She actually likes the bed! OK, I do
have to admit, this morning was better than the last
several - she actually let me sleep with her for part of
the night. Up until these past few hospitalizations, I
always slept with Avalon any time we were in-house.
PICU frowns heavily upon that - so that wasn't quite an
option down there. But, in truth, it didn't matter. Avalon
had made it perfectly clear I wasn't welcome in her
comfy little nest. I'm not sure if its an ages and stages
thing - or a pain thing. Considering she'll snuggle up
any other day, I'm pretty sure its just been a keep far
far away from my head issue.
Last night was OK, but, as per usual, not the most
restful. Face it, no night in a hospital is restful. The
stories of celebrities going to the hospital to "rest" are
so full of crappola - you can smell them through the
computer. Absolutely NO ONE rests in a hospital! They
do vitals all night, wake you up for meds, and my
personal favorite - wake Avalon up to shine a flashlight
in her eyes and check her pupils. I think its barbaric. I
know why its necessary - but I still think its a particular
form of cruelty.
Last night, we had a rather strict nurse. Yes, she's very
kind. And yes, she's very thorough and good at her
job. But cripes...waking a kid up and demanding that
she pee on command at 6 am, because you refuse to
not see her go to the bathroom at least once during
your shift....is just nuts. Not to mention, at the late
afternoon flush of Avalon's IV, it had been very difficult
to push any fluid. It was obvious that we were very
close to "losing" the line. (meaning, it was not going to
be a viable peripheral IV for much longer) It wasn't that
big of a deal, because we knew we were supposed to
be going home in the morning. Then, in the middle of
the night, (I'm talking 3 am here...) our industrious nurse
insists on flushing the IV again. I warned her that she'd
never get the full flush in - we'd had trouble earlier. No,
no - she can't listen. She goes and ahead and tries
forcing the saline...repeatedly... OK, imagine being
Avalon. You're sound asleep, comfy, resting - and
suddenly you have the sensation that someone is trying
to explode your hand from the inside out -
REPEATEDLY. I've had an IV develop a block like this.
Rather than do a new stick, nurses will "blow" the clot by
forcing a large amount of saline quickly through the line.
Its AWFUL! I'm not kidding when I say that it feels like
the entire back of your hand is coming off any second.
And yet...the nurse did this 4 or 5 times to my sleeping
munchkin. Finally, I'd had it. I said, "Listen! That's just
mean. We're going home in a few hours anyway...it
doesn't matter if she loses the line. Stop!!" By that
point, she'd managed to get a few cc's in, and she was
happy.
Moving on to the morning, and sure enough - we got
our walking orders. The nurse practitioner bribed
Avalon to eat at least a little breakfast, if she wanted to
be sprung. True to her word then, the nurse came in to
remove the IV, so we could walk around with no tubies,
while we waited for the doctors to round and the orders
to be drawn up. That's when we discovered it. The IV
that had tormented Avalon overnight, was missing! The
tape was perfectly in place...but the tube was gone!!
There was dried blood under the tape, and a VERY
sore spot - but no tubes. I found them a few hours
later, at the foot of the bed, draped over one of the
wheels... Weirdest thing we've had happen in a while.
From where the hole was on Avalon's wrist - no wonder
the thing drove her crazy the entire stay. The IV was
inserted very close to the bend of her wrist, on the back
of her hand. The internal shunt must have laid across
her bones and kind of kinked every time she moved.
Looked like more than enough to make me crazy.
But oh, I forgot to mention the most important part of the
morning...the unveiling. Poor Dr. ____. He once again
got stuck with the job of taking off the dressing. He's a
lovely young resident, and assisted in both temporal
decompression surgeries. He's very much a departure
from the normal neurosurgeon. He's bubbly and
friendly and seems far too young to be where he is.
While I posted his picture with the other resident and Dr.
Kosnik on yesterday's entry, the truth is - the picture
was taken today, Saturday. Dr. _____ came in to do
morning rounds, and grinned at Avalon in his usual
manner. She grilled him about being able to go home,
and asked if he was going to take her bandage off.
Sweetheart that he is, he said he'd be glad to. At least
this time, I knew what to expect. These are pretty
whopping incisions the first time you see them!
After the great "unveiling" and close inspection to make
sure everything looked good (which it did!), I asked Dr.
____ if I could take his picture with Avalon. I explained
that we needed him for our future Wall of Fame. He
easily agreed, and joked with Avalon about her silly new
haircut. Then he said, "You think you've got crazy hair!
Wait until you see mine!" He made a giant production
of pulling off his surgical cap - to reveal a bouncy,
untamed, pile of curls - that kind of sprang from
nowhere. Avalon gasped, giggled, and said, "Your hair
is kinda crazy! I like it!" Grinning like two cheshire cats
- they produced the adorable picture that was on
yesterday's entry.
No too long after our happy chat with Dr. ____, the
morning took an interesting turn. It happened that I saw
Voldemort making his way down the hall for rounds. No
big surprise - he is still a surgeon there. The SHOCK
came when he had the cahoonas to walk into our room
and ask if he could do anything for Avalon. I mean, are
you friggin' kidding me?!!!! I managed to squeak out
something on the order of, "No, thank you." But my
demeanor was so obvious, that even little Miss Clueless
caught on. As soon as he left, Avalon said, "Hey mom,
you didn't even look at him. Why were you so rude?"
Tee hee, it is to laugh. I thought I'd been pretty polite -
all things considered. I'm telling you, the man must
have elephant gonads to think A) he was welcome in my
room, and B) that I'd ever let him do anything for her,
ever again. Elephant balls and a flea brain...its the only
reasonable explanation...
After the "encounter", Avalon decided she simply had to
get dressed. Part of it was trying to will her way home
faster, and part of it was knowing there was a new bright
yellow dress burning a hole in her suitcase. (the dress
being the arguable LARGER portion of the equation)
Frankly, she'd have probably agreed to stay another
week, as long as I let her wear the new yellow dress for
the day. Avalon is allllllll girl. She loves dresses,
sparkles and princesses. And, she's absolutely sure
that everything in the world should be yellow. Give her
a yellow dress, with ruffles, sparkles, and Ariel - and
what few hairs she has left, nearly fell out in
anticipation. Way to go Angel Tammy! She loves it!!
Dress on, it was time to go for one last fishy hunt before
we were sent home. However, leaving the unit means
wearing a "Cran Cap". I should have explained these
long ago, considering you've seen them in several
pictures. Cran caps are sterile hats that brain surgery
patients wear to protect their incisions from germs, in
crowded situations. Patients are supposed to wear
them any time they leave the unit. They are also
supposed to wear them in public places after they go
home, until they are cleared by the surgeon. Think of a
Cran Cap as the brain surgery patient's equivalent of a
cancer kid's mask. Its a tool that helps keep them safe.
Weekends on T-3 are the best, because that's when
Kristin works. Kristin is the Cran Cap Queen. She's
Vera Wang, Dolce & Gabana, and Ralph Lauren all
rolled into one. She's the high priestess of Cran Cap
fashion...and well worth pestering for her infamous
creations. During Avalon's shunt surgery stay, Kristin
made a "Rapunzel" braid cap for Avalon. The braid was
so long, it could wrap around her neck, and protect the
neck sutures as well as the scalp ones. This time,
Kristin whipped up a straight Rapunzel wig - with nearly
floor-dragging hair. Every girls' dream come true! We
also have dredlocks, braided piggies, and several other
cool Kristin creations in our collection. She really is one
in a million.
New dress and fabulous hat in place, we were ready to
go on our fishy hunt. No sense going downstairs to hug
on Karen - she doesn't work weekends. So, we stuck to
the patient tower - and visited our favorite lobby fish
tanks. Avalon was feeling good enough, she even
opted to leave her wheelchair behind. She's one tough
cookie.
Up on the 5th floor, we got a wild hair and decided to
visit J-5 to see if we knew any of the nurses. Sure
enough, the first face we saw when we walked on the
unit was Natalie, a dear friend from years past. I had
teased her mercilessly during the last hospital stay,
because she hadn't recognized me in my bird costume
for the Kids N Kamp fundraiser. I was thrilled to be able
to bring Avalon to say "Hi!" Lo and behold, I also
thought I recognized the piggy tail sitting at the
computer behind Natalie. Sure enough, I did!
The pigtail belonged to Mandy, a much-loved nurse
from Avalon's diagnosis days. If you go back to the
beginning of Avalon's cancer journey - you'll see a
favorite picture of mine of Avalon with Mandy. Mandy
will always hold a special place in my heart - for the
pure emotion she was willing to share with us - as
Avalon touched her heart one day. She's a part of us,
even if we haven't seen her in years. She actually
didn't even recognize Avalon! She saw me, then
realized who that little girl next to her had to be. Too
funny! It made for lots of laughs and even more hugs.
Its nice to know how many loving, caring people we
have counted through the years as part of Avalon's
care team.
After hugs and fishy grins, we headed back to the room
to finish packing up. Thankfully, I'd been smart enough
to bring poster boards to the hospital to hang cards on.
It was easy to untape and stack the posters, ready for
the trip home. Actually, I laughed as I packed up. For
the mountain of stuff I bring - its pretty easy to toss it all
back in, when we know we're close to freedom!
It didn't take too long, and we were on our way. I didn't
even take time to call home and warn the troops, I just
thought we'd surprise them. Then, on the way home, I
had the awful thought of, "What if Grammo and Pappo
take the kids to the park...and we come home to an
empty house?" I hurried up and made the call then.
Good thing too, Grammo and Ambrosia were still at
Aunt Nettie's. We very nearly made a grand entrance
without Fric being there to greet Frac. That would have
been disastrous....
Once home, it was like feeding Miss Avalon a dose of
puppy uppers. The quiet, forlorn kid of the hospital was
suddenly bouncy and bubbly. She couldn't stop
chatting, and flitting from one toy to the next. Better yet,
my mother got her to eat more in one evening, than
she'd had in several days! Go Grammo Go! Grandmas
have secret ninja powers of persuasion in the food
department.
Avalon spent the afternoon eating, playing, eating, and
playing some more. We all marveled at her sudden
burst of energy, then realized what was really
happening. Avalon was, once again, "playing through
the pain" - choosing to set aside what ailed her in the
name of fun. While its an admirable trait, its not terribly
conducive to healing. Grammo and Pappo decided to
call it a short night, and headed off pretty early, to
encourage Avalon to rest a bit. I'm pretty sure they
hadn't even rounded the corner yet - before she was a
lump of goo on the couch. Once the magical
grandparents left - so did her gusto. Ahh....the joys of
childhood and being able to pretend you feel better
than you do. Darn shame we can't learn how to
replicate that.
The other joy of the day was returning to a pile of mail
from Avalon's well-wishers. The mountain of cards was
absolutely unbelievable! Considering we hadn't even
managed to open all of them we'd had at the hospital -
we couldn't fathom we had more waiting on her. We all
decided we would make building her "Maps of Love" a
family project. It was the greatest gift we could have
hoped for - oodles of proof that pure, generous love is
abundant in the universe. I can't imagine a better
homecoming gift...
OK, I did have one better homecoming present....my
own bed. My very own,
I-love-it-so-much-it-should-be-criminal bed.
Ahhhh.....the simple joys in life. Sleeping. Sleeping in a
bed. Sleeping in a bed with no beeps, nurses, lights, or
interruptions. Ahhhhhh.....life is going to be good
again.......
bent, and mangled everything. Avalon fairs much better
in the hospital. She actually likes the bed! OK, I do
have to admit, this morning was better than the last
several - she actually let me sleep with her for part of
the night. Up until these past few hospitalizations, I
always slept with Avalon any time we were in-house.
PICU frowns heavily upon that - so that wasn't quite an
option down there. But, in truth, it didn't matter. Avalon
had made it perfectly clear I wasn't welcome in her
comfy little nest. I'm not sure if its an ages and stages
thing - or a pain thing. Considering she'll snuggle up
any other day, I'm pretty sure its just been a keep far
far away from my head issue.
Last night was OK, but, as per usual, not the most
restful. Face it, no night in a hospital is restful. The
stories of celebrities going to the hospital to "rest" are
so full of crappola - you can smell them through the
computer. Absolutely NO ONE rests in a hospital! They
do vitals all night, wake you up for meds, and my
personal favorite - wake Avalon up to shine a flashlight
in her eyes and check her pupils. I think its barbaric. I
know why its necessary - but I still think its a particular
form of cruelty.
Last night, we had a rather strict nurse. Yes, she's very
kind. And yes, she's very thorough and good at her
job. But cripes...waking a kid up and demanding that
she pee on command at 6 am, because you refuse to
not see her go to the bathroom at least once during
your shift....is just nuts. Not to mention, at the late
afternoon flush of Avalon's IV, it had been very difficult
to push any fluid. It was obvious that we were very
close to "losing" the line. (meaning, it was not going to
be a viable peripheral IV for much longer) It wasn't that
big of a deal, because we knew we were supposed to
be going home in the morning. Then, in the middle of
the night, (I'm talking 3 am here...) our industrious nurse
insists on flushing the IV again. I warned her that she'd
never get the full flush in - we'd had trouble earlier. No,
no - she can't listen. She goes and ahead and tries
forcing the saline...repeatedly... OK, imagine being
Avalon. You're sound asleep, comfy, resting - and
suddenly you have the sensation that someone is trying
to explode your hand from the inside out -
REPEATEDLY. I've had an IV develop a block like this.
Rather than do a new stick, nurses will "blow" the clot by
forcing a large amount of saline quickly through the line.
Its AWFUL! I'm not kidding when I say that it feels like
the entire back of your hand is coming off any second.
And yet...the nurse did this 4 or 5 times to my sleeping
munchkin. Finally, I'd had it. I said, "Listen! That's just
mean. We're going home in a few hours anyway...it
doesn't matter if she loses the line. Stop!!" By that
point, she'd managed to get a few cc's in, and she was
happy.
Moving on to the morning, and sure enough - we got
our walking orders. The nurse practitioner bribed
Avalon to eat at least a little breakfast, if she wanted to
be sprung. True to her word then, the nurse came in to
remove the IV, so we could walk around with no tubies,
while we waited for the doctors to round and the orders
to be drawn up. That's when we discovered it. The IV
that had tormented Avalon overnight, was missing! The
tape was perfectly in place...but the tube was gone!!
There was dried blood under the tape, and a VERY
sore spot - but no tubes. I found them a few hours
later, at the foot of the bed, draped over one of the
wheels... Weirdest thing we've had happen in a while.
From where the hole was on Avalon's wrist - no wonder
the thing drove her crazy the entire stay. The IV was
inserted very close to the bend of her wrist, on the back
of her hand. The internal shunt must have laid across
her bones and kind of kinked every time she moved.
Looked like more than enough to make me crazy.
But oh, I forgot to mention the most important part of the
morning...the unveiling. Poor Dr. ____. He once again
got stuck with the job of taking off the dressing. He's a
lovely young resident, and assisted in both temporal
decompression surgeries. He's very much a departure
from the normal neurosurgeon. He's bubbly and
friendly and seems far too young to be where he is.
While I posted his picture with the other resident and Dr.
Kosnik on yesterday's entry, the truth is - the picture
was taken today, Saturday. Dr. _____ came in to do
morning rounds, and grinned at Avalon in his usual
manner. She grilled him about being able to go home,
and asked if he was going to take her bandage off.
Sweetheart that he is, he said he'd be glad to. At least
this time, I knew what to expect. These are pretty
whopping incisions the first time you see them!
After the great "unveiling" and close inspection to make
sure everything looked good (which it did!), I asked Dr.
____ if I could take his picture with Avalon. I explained
that we needed him for our future Wall of Fame. He
easily agreed, and joked with Avalon about her silly new
haircut. Then he said, "You think you've got crazy hair!
Wait until you see mine!" He made a giant production
of pulling off his surgical cap - to reveal a bouncy,
untamed, pile of curls - that kind of sprang from
nowhere. Avalon gasped, giggled, and said, "Your hair
is kinda crazy! I like it!" Grinning like two cheshire cats
- they produced the adorable picture that was on
yesterday's entry.
No too long after our happy chat with Dr. ____, the
morning took an interesting turn. It happened that I saw
Voldemort making his way down the hall for rounds. No
big surprise - he is still a surgeon there. The SHOCK
came when he had the cahoonas to walk into our room
and ask if he could do anything for Avalon. I mean, are
you friggin' kidding me?!!!! I managed to squeak out
something on the order of, "No, thank you." But my
demeanor was so obvious, that even little Miss Clueless
caught on. As soon as he left, Avalon said, "Hey mom,
you didn't even look at him. Why were you so rude?"
Tee hee, it is to laugh. I thought I'd been pretty polite -
all things considered. I'm telling you, the man must
have elephant gonads to think A) he was welcome in my
room, and B) that I'd ever let him do anything for her,
ever again. Elephant balls and a flea brain...its the only
reasonable explanation...
After the "encounter", Avalon decided she simply had to
get dressed. Part of it was trying to will her way home
faster, and part of it was knowing there was a new bright
yellow dress burning a hole in her suitcase. (the dress
being the arguable LARGER portion of the equation)
Frankly, she'd have probably agreed to stay another
week, as long as I let her wear the new yellow dress for
the day. Avalon is allllllll girl. She loves dresses,
sparkles and princesses. And, she's absolutely sure
that everything in the world should be yellow. Give her
a yellow dress, with ruffles, sparkles, and Ariel - and
what few hairs she has left, nearly fell out in
anticipation. Way to go Angel Tammy! She loves it!!
Dress on, it was time to go for one last fishy hunt before
we were sent home. However, leaving the unit means
wearing a "Cran Cap". I should have explained these
long ago, considering you've seen them in several
pictures. Cran caps are sterile hats that brain surgery
patients wear to protect their incisions from germs, in
crowded situations. Patients are supposed to wear
them any time they leave the unit. They are also
supposed to wear them in public places after they go
home, until they are cleared by the surgeon. Think of a
Cran Cap as the brain surgery patient's equivalent of a
cancer kid's mask. Its a tool that helps keep them safe.
Weekends on T-3 are the best, because that's when
Kristin works. Kristin is the Cran Cap Queen. She's
Vera Wang, Dolce & Gabana, and Ralph Lauren all
rolled into one. She's the high priestess of Cran Cap
fashion...and well worth pestering for her infamous
creations. During Avalon's shunt surgery stay, Kristin
made a "Rapunzel" braid cap for Avalon. The braid was
so long, it could wrap around her neck, and protect the
neck sutures as well as the scalp ones. This time,
Kristin whipped up a straight Rapunzel wig - with nearly
floor-dragging hair. Every girls' dream come true! We
also have dredlocks, braided piggies, and several other
cool Kristin creations in our collection. She really is one
in a million.
New dress and fabulous hat in place, we were ready to
go on our fishy hunt. No sense going downstairs to hug
on Karen - she doesn't work weekends. So, we stuck to
the patient tower - and visited our favorite lobby fish
tanks. Avalon was feeling good enough, she even
opted to leave her wheelchair behind. She's one tough
cookie.
Up on the 5th floor, we got a wild hair and decided to
visit J-5 to see if we knew any of the nurses. Sure
enough, the first face we saw when we walked on the
unit was Natalie, a dear friend from years past. I had
teased her mercilessly during the last hospital stay,
because she hadn't recognized me in my bird costume
for the Kids N Kamp fundraiser. I was thrilled to be able
to bring Avalon to say "Hi!" Lo and behold, I also
thought I recognized the piggy tail sitting at the
computer behind Natalie. Sure enough, I did!
The pigtail belonged to Mandy, a much-loved nurse
from Avalon's diagnosis days. If you go back to the
beginning of Avalon's cancer journey - you'll see a
favorite picture of mine of Avalon with Mandy. Mandy
will always hold a special place in my heart - for the
pure emotion she was willing to share with us - as
Avalon touched her heart one day. She's a part of us,
even if we haven't seen her in years. She actually
didn't even recognize Avalon! She saw me, then
realized who that little girl next to her had to be. Too
funny! It made for lots of laughs and even more hugs.
Its nice to know how many loving, caring people we
have counted through the years as part of Avalon's
care team.
After hugs and fishy grins, we headed back to the room
to finish packing up. Thankfully, I'd been smart enough
to bring poster boards to the hospital to hang cards on.
It was easy to untape and stack the posters, ready for
the trip home. Actually, I laughed as I packed up. For
the mountain of stuff I bring - its pretty easy to toss it all
back in, when we know we're close to freedom!
It didn't take too long, and we were on our way. I didn't
even take time to call home and warn the troops, I just
thought we'd surprise them. Then, on the way home, I
had the awful thought of, "What if Grammo and Pappo
take the kids to the park...and we come home to an
empty house?" I hurried up and made the call then.
Good thing too, Grammo and Ambrosia were still at
Aunt Nettie's. We very nearly made a grand entrance
without Fric being there to greet Frac. That would have
been disastrous....
Once home, it was like feeding Miss Avalon a dose of
puppy uppers. The quiet, forlorn kid of the hospital was
suddenly bouncy and bubbly. She couldn't stop
chatting, and flitting from one toy to the next. Better yet,
my mother got her to eat more in one evening, than
she'd had in several days! Go Grammo Go! Grandmas
have secret ninja powers of persuasion in the food
department.
Avalon spent the afternoon eating, playing, eating, and
playing some more. We all marveled at her sudden
burst of energy, then realized what was really
happening. Avalon was, once again, "playing through
the pain" - choosing to set aside what ailed her in the
name of fun. While its an admirable trait, its not terribly
conducive to healing. Grammo and Pappo decided to
call it a short night, and headed off pretty early, to
encourage Avalon to rest a bit. I'm pretty sure they
hadn't even rounded the corner yet - before she was a
lump of goo on the couch. Once the magical
grandparents left - so did her gusto. Ahh....the joys of
childhood and being able to pretend you feel better
than you do. Darn shame we can't learn how to
replicate that.
The other joy of the day was returning to a pile of mail
from Avalon's well-wishers. The mountain of cards was
absolutely unbelievable! Considering we hadn't even
managed to open all of them we'd had at the hospital -
we couldn't fathom we had more waiting on her. We all
decided we would make building her "Maps of Love" a
family project. It was the greatest gift we could have
hoped for - oodles of proof that pure, generous love is
abundant in the universe. I can't imagine a better
homecoming gift...
OK, I did have one better homecoming present....my
own bed. My very own,
I-love-it-so-much-it-should-be-criminal bed.
Ahhhh.....the simple joys in life. Sleeping. Sleeping in a
bed. Sleeping in a bed with no beeps, nurses, lights, or
interruptions. Ahhhhhh.....life is going to be good
again.......
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| I might be going home, but it still hurts. |
| This is what Avalon looked like most of the week. The smiles were usually just for the camera. |
| Opening is fun... |
| Typical - lots of food, cut up and ready to go...and she just picks at it. |
| One potato triangle for an entire day is not enough! |
| Poster board of cards |
| Avalon's door with her banners and her staff "Hall of Fame" Avalon's Room sign. |
| A few of the cards from the Card Storm. Also, you can see the door to Avalon's room on the right. These rooms are soooooo small - that the room door doubles as the door to the bathroom. In this picture, the door to the room is open, because its shut for the bathroom. Insane, isn't it? |
| Hawgs the monkey, ready to go home - Cran Cap and all. Dig the flowers on Avalon's wheelchair. |
| Bad, bad, multi-days-in-bed hair. |
| Thinking she's all that and more in her new sparkly, yellow Ariel dress. Oh, and the comfy recliner chair - that doesn't fit in the pregnant closet they call a "room". |
| Avalon watching Kristin making her latest fashion marvel... |
| Looking out Avalon's door, down the hall on T-3. I don't know why I took this. I suppose - just because... |
| Kristin, PCA on 3 Tower, the maker of the "Very Best Cran caps ever!!" Avalon is modeling a Rapunzel number... |
| Natalie and Mandy,two of Avalon's former Heme-Onc nurses - we visited them on J-5 during a fishy hunt |
| The new incision. The third brain surgery of the Summer of 2008. Other kids collect bug bites, tan lines, souveniers. Avalon? Well, by golly, she collects "zippers". Neat. |
| Avalon Mirabelle Havan. Princess lover, yellow worshiper, and owner of a fabulous new hairstyle. We call it "Hair by Jason". For those of you too young to get how funny I am - ask an old fogey about Friday the 13th movies. After you ask, feel free to smack yourself for me! BTW, in case you're wondering, the line you see above the neckline of her dress is a "zipper" from her port removal surgery. She's chuck-a-muck full of those magic zippers. And you know what else she's full of? CUTE! |