Our
Journey:
Journey:
Avalon's Army of Angels
| July 20, 2008 Waiting for poo.... |
| Check out those freckles! |
Sent: July 20, 2008
Subject: Waiting for poo...
Avalon could quite possibly be considered the
poster child for negative chemotherapy side
effects. The high dose steroids damaged her
bones and joints. Some combination of
intrathecal (spinal) chemo, IV chemo, steroids,
and/or high dose antibiotics caused her pseudo
tumor cerebri. The IV chemo that often causes
temporary peripheral neuropathy, set off a chain
of events in her body that led to cascading
demyelination and extensive neuropathy, both
peripheral motor and central. And, as if that
wasn't a long enough list...the central neuropathy
has led to low motility.
What in the Sam Hill is low motility? It means that
food doesn't move through Avalon's gut at the
rate of speed it should. Somewhere, presumably
the colon, it slows to a near halt. The good
news/bad news is, thanks to the central
neuropathy that causes the slow motility, Avalon
can't feel pain in her gut either. In other words,
when we accidentally discovered that she was
fully fecal impacted a few months ago - she was
blissfully unaware of it. A normal child would have
been writhing in agony. Avalon was simply going
on through her days.
Avalon's issue is normally pretty easy to handle.
She takes a Dulcolax every night before bed. We
sometimes skip a dose if we know we're going to
be in public the next day (Dulcolax doesn't give
you a lot of warning as to when it will work), but
other than that - its a very simple fix. The real
challenge is when Avalon has surgery.
For a normal person, being under general
anesthesia can slow down digestion a bit. That's
why after an operation, nurses listen for bowl
sounds, and make such a fuss when you finally
make a "deposit". Four kids and four c-sections
later, I'm no stranger to the post-op cheer fest
when you've had your first official "movement".
Avalon's gut is already slow. Putting her under
general anesthesia brings snail progress, to rock
status. The whole system just quits. Therefore,
we end up spending the last several days of a
hospital stay, just waiting for her system to wake
up. I'm a bit finicky, I refuse to take a child home
until food is going in and coming back out in the
appropriate direction. I'm funny that way, I would
like to see that all systems are "go!" before I head
off into the great unknown by myself.
This surgery was no different. GI was called in to
consult and manage the parts of Avalon that are
foreign territory to neurosurgery. That means GI
rounds on Avalon (comes to visit her room once a
day), monitors her condition through abdominal
palpations, rectal exams, and x-rays, and
prescribes the increasing level of meds they feel
necessary to awaken the napping system. I have
found the GI docs to be the closest so far to
Heme-Onc in their friendliness, patient interest,
parent involvement, and general "Nice Guy"
status.
GI deals with Avalon's "back-up" much more
calmly than the neuro-surgery team does. The GI
docs are laid back, and have a slow-go, as few
meds as possible approach. They were far more
supportive of pain management than
neuro-surgery. You see, narcotics (morphine)
are well-known for slowing down digestion. Our
nurses were terribly worried about contributing to
her issues. So worried, in fact, we again
under-medicated her. GI said they were fine with
morphine, they'd rather have her pain-free. Face
it, a body that is seized up in pain, isn't conducive
to free-flowing feces.
So, the story of Sunday was basically hurry up
and wait. Avalon's pain was much better, and
after hooking her back up to IV's Saturday night,
she actually started producing a bit of liquid
again. PICU had discontinued fluids the night of
the operation, thinking she was fine to just drink.
After only one "output" per day for 4 days, the
nurse practitioners on T-3 agreed with me we'd
pushed that issue too far. The problem is, when
no solids are exiting, the poor little kid always
feels "full". Therefore, she doesn't drink, and has
no "output". 3-4 days of that, and we could end
up with kidney failure. And lordy me, doesn't she
have enough crap to deal with already? (OK, as
of today, maybe enough crap is not necessarily
the best choice of words....)
In other words, we spent the day...waiting. We
walked, we played, we laughed with nurses, and
we waited. Then, we waited some more. Every
staff member did their level best to coach some
poo. They did pro-poo chanting, begged to be
stunk out of the room with rancid poo, offered any
number of bribes if she'd come up with
something, and generally speaking - were an
absolute laugh riot about her needing to be a
Poopinator. I'm here to report, a bunch of nurses
with good senses of humor and a short person
who needs to poo - is a match made in Comic
Relief Heaven. I can't begin to describe the
ridiculous things we did and said.
Finally, at about 10 pm, we hit paydirt!! Short
and cute finally made a deposit! Darn shame
though, the Sunday night crew wasn't nearly as
much fun as the day shift had been. Day shift
would have had a Mardi-Gras-esque parade
(they promised it). Night shift merely said, "oh
good." Slightly anti-climatic after what all we'd
done during the day...
With my little pooper once again in go-mode, its a
sure bet we're home again, home again
tomorrow! Wahooooooo!!!!
Subject: Waiting for poo...
Avalon could quite possibly be considered the
poster child for negative chemotherapy side
effects. The high dose steroids damaged her
bones and joints. Some combination of
intrathecal (spinal) chemo, IV chemo, steroids,
and/or high dose antibiotics caused her pseudo
tumor cerebri. The IV chemo that often causes
temporary peripheral neuropathy, set off a chain
of events in her body that led to cascading
demyelination and extensive neuropathy, both
peripheral motor and central. And, as if that
wasn't a long enough list...the central neuropathy
has led to low motility.
What in the Sam Hill is low motility? It means that
food doesn't move through Avalon's gut at the
rate of speed it should. Somewhere, presumably
the colon, it slows to a near halt. The good
news/bad news is, thanks to the central
neuropathy that causes the slow motility, Avalon
can't feel pain in her gut either. In other words,
when we accidentally discovered that she was
fully fecal impacted a few months ago - she was
blissfully unaware of it. A normal child would have
been writhing in agony. Avalon was simply going
on through her days.
Avalon's issue is normally pretty easy to handle.
She takes a Dulcolax every night before bed. We
sometimes skip a dose if we know we're going to
be in public the next day (Dulcolax doesn't give
you a lot of warning as to when it will work), but
other than that - its a very simple fix. The real
challenge is when Avalon has surgery.
For a normal person, being under general
anesthesia can slow down digestion a bit. That's
why after an operation, nurses listen for bowl
sounds, and make such a fuss when you finally
make a "deposit". Four kids and four c-sections
later, I'm no stranger to the post-op cheer fest
when you've had your first official "movement".
Avalon's gut is already slow. Putting her under
general anesthesia brings snail progress, to rock
status. The whole system just quits. Therefore,
we end up spending the last several days of a
hospital stay, just waiting for her system to wake
up. I'm a bit finicky, I refuse to take a child home
until food is going in and coming back out in the
appropriate direction. I'm funny that way, I would
like to see that all systems are "go!" before I head
off into the great unknown by myself.
This surgery was no different. GI was called in to
consult and manage the parts of Avalon that are
foreign territory to neurosurgery. That means GI
rounds on Avalon (comes to visit her room once a
day), monitors her condition through abdominal
palpations, rectal exams, and x-rays, and
prescribes the increasing level of meds they feel
necessary to awaken the napping system. I have
found the GI docs to be the closest so far to
Heme-Onc in their friendliness, patient interest,
parent involvement, and general "Nice Guy"
status.
GI deals with Avalon's "back-up" much more
calmly than the neuro-surgery team does. The GI
docs are laid back, and have a slow-go, as few
meds as possible approach. They were far more
supportive of pain management than
neuro-surgery. You see, narcotics (morphine)
are well-known for slowing down digestion. Our
nurses were terribly worried about contributing to
her issues. So worried, in fact, we again
under-medicated her. GI said they were fine with
morphine, they'd rather have her pain-free. Face
it, a body that is seized up in pain, isn't conducive
to free-flowing feces.
So, the story of Sunday was basically hurry up
and wait. Avalon's pain was much better, and
after hooking her back up to IV's Saturday night,
she actually started producing a bit of liquid
again. PICU had discontinued fluids the night of
the operation, thinking she was fine to just drink.
After only one "output" per day for 4 days, the
nurse practitioners on T-3 agreed with me we'd
pushed that issue too far. The problem is, when
no solids are exiting, the poor little kid always
feels "full". Therefore, she doesn't drink, and has
no "output". 3-4 days of that, and we could end
up with kidney failure. And lordy me, doesn't she
have enough crap to deal with already? (OK, as
of today, maybe enough crap is not necessarily
the best choice of words....)
In other words, we spent the day...waiting. We
walked, we played, we laughed with nurses, and
we waited. Then, we waited some more. Every
staff member did their level best to coach some
poo. They did pro-poo chanting, begged to be
stunk out of the room with rancid poo, offered any
number of bribes if she'd come up with
something, and generally speaking - were an
absolute laugh riot about her needing to be a
Poopinator. I'm here to report, a bunch of nurses
with good senses of humor and a short person
who needs to poo - is a match made in Comic
Relief Heaven. I can't begin to describe the
ridiculous things we did and said.
Finally, at about 10 pm, we hit paydirt!! Short
and cute finally made a deposit! Darn shame
though, the Sunday night crew wasn't nearly as
much fun as the day shift had been. Day shift
would have had a Mardi-Gras-esque parade
(they promised it). Night shift merely said, "oh
good." Slightly anti-climatic after what all we'd
done during the day...
With my little pooper once again in go-mode, its a
sure bet we're home again, home again
tomorrow! Wahooooooo!!!!
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| Kristin and Shauna. Kristin makes the best surgical hats ever. She also sings a mighty fine cartoon theme song. Shauna has a twinkly smile and is a tad frog-obsessed. Any wonder why I love these people? |
| Cecil - my beloved Coffee Fairy!!! |
| Shiner is getting a bit better. |
| The rooms all have whiteboards to remind you of the date, and to tell you who your current nurse/PCA are. I love the fact that they leave messages up too. Our friends Liz and Ryan wrote that message days ago. |
| Grammo and Pappo, posing before they had to go home to Dayton, and back to work. |
| These pictures are easy to label... |
| ...And the Ugly! The large vertical scar is from this operation. The moon shaped red scar above it, is from her last shunt surgery. See how "pretty" (all things are relative) the new scar is? In a few weeks, it should be nothing but a thin line. The shunt scar is horrible. During the procedure, Avalon's scalp was opened, closed, then re-opened. The second closing, was merely done with steri-strips. That didn't create a good healing field. The shunt scar is wide and red. We fear the shunt isn't working properly, but her current surgeon is concerned with opening the scalp right now. His fear is there isn't enough skin integrity to allow him to close an incision. Therefore, working or not - she's stuck until she's healed enough. We've been told maybe 2 or 3 months. |
| The Bad |
| The Good |
| This is the Pappo frog. The frog was delivered earlier in the week. Avalon had a froggie birthday this year, and has become rather smitten with the little buggers. This one is now infamous in family lore. When Pappo arrived for a visit Friday night, he asked where Avalon's frog was. Thinking he'd suddenly gone blind, I incredulously pointed out the furry frog with the wad of balloons coming out of his rear. Apparently, Pappo had called the gift shop and requested mylar balloons, "a frog if you have one". He intended to request a mylar frog balloon, not a bunch of balloons with a stuffed frog. While Avalon was thrilled, Pappo required a few deep breaths over what he knew would be a much larger bill than a single balloon - thank you gift shop extortion-prices. As with lamp genies, it appears you must choose your words very carefully when dealing with gift shop clerks. |