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Our
Journey:
Journey:
Avalon's Army of Angels
| August 29, 2008 GI appointment and off to camp |
We leave this afternoon for Kids N Kamp Family Camp. Nick, myself, and all 4 kiddos are
going off to a weekend family camp. Think girlscout camp for the entire family. I'm in the
middle of frantic packing and organizing, hoping I'll manage to unearth everything we'll need.
In addition to my crazed pre-camp stuff, Avalon had one of her GI appointments today.
Basically, GI will be a part of her life forever. Since her gut no longer functions properly, she'll
always have to be checked, to make sure she doesn't have trouble brewing. If you don't
remember, Avalon's colon has very slow (nearly nonexistent) motility now. In other words,
waste doesn't move through it without help. Since she has central neuropathy, (the nerves in
the core of her body don't work properly) she can't feel when she has a problem. Typically,
fecal impaction causes astronomical pain before it becomes dangerous. Avalon had passed
the danger state, and never felt a thing. So...now we see GI on a regular basis.
I have to interject here how much I LOVE the GI department. GI is like Heme-Onc, they keep
their kids for a long time. They get to know kids and families. Also like Heme-Onc, they are
incredibly nice. I won't lie about being very disheartened about having to add another
department to Avalon's roster. But from the very first appointment, we felt welcome, and cared
for. Avalon's attending, Dr. Potter is a true gem. I wouldn't trade her for the world! We've
also met several other attendings while she's been in-house this Summer, and each one was
equally kind and caring. I particularly liked Dr. DeLorenzo (spelling?) who just happens to be
a world-renowned motility specialist. He'll be the one Dr. Potter will consult with if Avalon gets
any worse. In all, I'm a gigantic fan of the entire service, and that's a nice feeling.
So, today's appointment was one of Avalon's typical follow-ups. Also, its the first time we've
seen Dr. Potter since the two temporal decompressions. I was very honest about how the
neurosurgery nurse practitioner handled Avalon's GI issues the second time around - thinking
Dr. Potter would be as thrilled as we were that she got Avalon moving so quickly. I
was....ummmm...wrong. Dr. Potter didn't look pleased at all. I'm pretty sure the overdose of
Mirilax will not happen the next time we're in. Oops, lesson learned.
Dr. Potter was also not pleased with my answer to one of her questions. She asked me how I
felt about "X". I said, "I'm sorry, but I haven't the foggiest idea what "X" is?" Second sour look
from Dr. Potter. Apparently, "X" is a new motility drug that GI was supposed to try with Avalon
when she was in-house. The doctors on floor duty ignored Dr. Potter's request, and she was
not thrilled. Pretty sure someone was going to hear about that. "X" is a drug that has been
approved/dosed for children very recently. Its been approved for adults for a while, so its not
experimental, its just new for children. Dr. Potter wanted to try it for Avalon, in place of her
daily Dulcolax. However, she decided today to stick with the current plan for now. Kind of a "if
it ain't broke, don't fix it" approach.
Our discussion today was about Avalon's eating, and her absolute need of Dulcolax now. In
the beginning, we could occasionally skip a Dulcolax for a night or two. Sometimes, we would
need to - because she'd be a bit "loose". Now, no little yellow pill means NO output. Zero,
zilch - it is not happening. That's a pretty significant difference. Leave it to Avalon, she can't
ever manage to be boring.
The other issue is her intake. Avalon rarely eats more than a few bites. She'll pester the
pants off of you for food, then take a few bites and declare, "I'm full!" She always asks that
you leave her plate on the table, and she'll circle back periodically to take another few bites.
Basically, breakfast often leads into lunch, lunch into dinner, as she nibbles bit by bit over the
course of several hours. Dr. Potter confirmed what we were worried about, that the monkeying
in Avalon's brain this summer could be responsible for a new issue. Or, we could just have a
behavioral thing going on. So, she's scheduling a gastric emptying study to see how long it
takes Avalon's stomach to empty. Its a pretty benign test. Avalon will come to the hospital
hungry one morning, eat some form of breakfast food with radioactive isotopes in it (Dr. Potter
thinks its oatmeal), and then they'll scan her stomach after she eats and again 2 hours later.
Pretty simple. Although, the concept of radioactive oatmeal cracks me up.
One of the reasons I like Dr. Potter so much is because she's very real. She has several kids
of her own, including a medically fragile son. She's "been there, done that" so she often is
very funny in how she sees things, very mom-to-mom. The stomach emptying test is the
epitome of that. After Dr. Potter explained how simple the test is (non-invasive), she said this.
By doing this, we'll know if she really has a problem, or if you just need to tell her to suck it up,
and eat! Ha! That's hysterical!! No pulling punches there. And truthfully, she summed up
perfectly what we've been wondering. Should we take a hard line on meal time - or does she
have a reason to be such a pain in the neck? I ADORE Dr. Potter for seeing it exactly the
same way we do.
As per usual, Anam was a royal pain in the butt for the appointment. He was obnoxious in the
exam room, so Aurora tried taking him out to the waiting area to play and watch TV. He
pitched such a fit, she ended up bringing him back halfway through our discussion with Dr.
Potter - because he was so loud and disruptive. I'm telling you, I love Picklehead, but there
are days that a padded cell doesn't seem like such a bad idea...
Thankfully, GI is significantly faster than Heme-Onc or neuro-surgery, so this wasn't too long
of a hospital day. Good thing, I had too many things to do on the home front.
Overall, Its been a rough day of crying about Malachi, feeling like dreck, trekking to the
hospital, and still trying to get my stuff together to make this weekend a success. But, as with
all things, I'm learning to let go of ideas of perfection, and just try to enjoy it. I'm hoping to
come back with tons of stories and loads of pictures to share with you.
Meanwhile, I hope you all have a glorious, fun-filled weekend. Even if your plans are just to sit
on the couch and relax - may you do that with abandon. Enjoy your time, each minute is
valuable.
Love to all!
going off to a weekend family camp. Think girlscout camp for the entire family. I'm in the
middle of frantic packing and organizing, hoping I'll manage to unearth everything we'll need.
In addition to my crazed pre-camp stuff, Avalon had one of her GI appointments today.
Basically, GI will be a part of her life forever. Since her gut no longer functions properly, she'll
always have to be checked, to make sure she doesn't have trouble brewing. If you don't
remember, Avalon's colon has very slow (nearly nonexistent) motility now. In other words,
waste doesn't move through it without help. Since she has central neuropathy, (the nerves in
the core of her body don't work properly) she can't feel when she has a problem. Typically,
fecal impaction causes astronomical pain before it becomes dangerous. Avalon had passed
the danger state, and never felt a thing. So...now we see GI on a regular basis.
I have to interject here how much I LOVE the GI department. GI is like Heme-Onc, they keep
their kids for a long time. They get to know kids and families. Also like Heme-Onc, they are
incredibly nice. I won't lie about being very disheartened about having to add another
department to Avalon's roster. But from the very first appointment, we felt welcome, and cared
for. Avalon's attending, Dr. Potter is a true gem. I wouldn't trade her for the world! We've
also met several other attendings while she's been in-house this Summer, and each one was
equally kind and caring. I particularly liked Dr. DeLorenzo (spelling?) who just happens to be
a world-renowned motility specialist. He'll be the one Dr. Potter will consult with if Avalon gets
any worse. In all, I'm a gigantic fan of the entire service, and that's a nice feeling.
So, today's appointment was one of Avalon's typical follow-ups. Also, its the first time we've
seen Dr. Potter since the two temporal decompressions. I was very honest about how the
neurosurgery nurse practitioner handled Avalon's GI issues the second time around - thinking
Dr. Potter would be as thrilled as we were that she got Avalon moving so quickly. I
was....ummmm...wrong. Dr. Potter didn't look pleased at all. I'm pretty sure the overdose of
Mirilax will not happen the next time we're in. Oops, lesson learned.
Dr. Potter was also not pleased with my answer to one of her questions. She asked me how I
felt about "X". I said, "I'm sorry, but I haven't the foggiest idea what "X" is?" Second sour look
from Dr. Potter. Apparently, "X" is a new motility drug that GI was supposed to try with Avalon
when she was in-house. The doctors on floor duty ignored Dr. Potter's request, and she was
not thrilled. Pretty sure someone was going to hear about that. "X" is a drug that has been
approved/dosed for children very recently. Its been approved for adults for a while, so its not
experimental, its just new for children. Dr. Potter wanted to try it for Avalon, in place of her
daily Dulcolax. However, she decided today to stick with the current plan for now. Kind of a "if
it ain't broke, don't fix it" approach.
Our discussion today was about Avalon's eating, and her absolute need of Dulcolax now. In
the beginning, we could occasionally skip a Dulcolax for a night or two. Sometimes, we would
need to - because she'd be a bit "loose". Now, no little yellow pill means NO output. Zero,
zilch - it is not happening. That's a pretty significant difference. Leave it to Avalon, she can't
ever manage to be boring.
The other issue is her intake. Avalon rarely eats more than a few bites. She'll pester the
pants off of you for food, then take a few bites and declare, "I'm full!" She always asks that
you leave her plate on the table, and she'll circle back periodically to take another few bites.
Basically, breakfast often leads into lunch, lunch into dinner, as she nibbles bit by bit over the
course of several hours. Dr. Potter confirmed what we were worried about, that the monkeying
in Avalon's brain this summer could be responsible for a new issue. Or, we could just have a
behavioral thing going on. So, she's scheduling a gastric emptying study to see how long it
takes Avalon's stomach to empty. Its a pretty benign test. Avalon will come to the hospital
hungry one morning, eat some form of breakfast food with radioactive isotopes in it (Dr. Potter
thinks its oatmeal), and then they'll scan her stomach after she eats and again 2 hours later.
Pretty simple. Although, the concept of radioactive oatmeal cracks me up.
One of the reasons I like Dr. Potter so much is because she's very real. She has several kids
of her own, including a medically fragile son. She's "been there, done that" so she often is
very funny in how she sees things, very mom-to-mom. The stomach emptying test is the
epitome of that. After Dr. Potter explained how simple the test is (non-invasive), she said this.
By doing this, we'll know if she really has a problem, or if you just need to tell her to suck it up,
and eat! Ha! That's hysterical!! No pulling punches there. And truthfully, she summed up
perfectly what we've been wondering. Should we take a hard line on meal time - or does she
have a reason to be such a pain in the neck? I ADORE Dr. Potter for seeing it exactly the
same way we do.
As per usual, Anam was a royal pain in the butt for the appointment. He was obnoxious in the
exam room, so Aurora tried taking him out to the waiting area to play and watch TV. He
pitched such a fit, she ended up bringing him back halfway through our discussion with Dr.
Potter - because he was so loud and disruptive. I'm telling you, I love Picklehead, but there
are days that a padded cell doesn't seem like such a bad idea...
Thankfully, GI is significantly faster than Heme-Onc or neuro-surgery, so this wasn't too long
of a hospital day. Good thing, I had too many things to do on the home front.
Overall, Its been a rough day of crying about Malachi, feeling like dreck, trekking to the
hospital, and still trying to get my stuff together to make this weekend a success. But, as with
all things, I'm learning to let go of ideas of perfection, and just try to enjoy it. I'm hoping to
come back with tons of stories and loads of pictures to share with you.
Meanwhile, I hope you all have a glorious, fun-filled weekend. Even if your plans are just to sit
on the couch and relax - may you do that with abandon. Enjoy your time, each minute is
valuable.
Love to all!