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Our
Journey:
Journey:
Avalon's Army of Angels
| July 30, 2008 Part B Description of the decompressions... Ewww... |
I know, its odd to have parts A, B, and C of the same "day". Truth be told, only Part A was
written on the actual day of July 30. Part B is exculpatory in nature. Its the description of the
actual procedure that Avalon went through on July 16, 2008, and again on July 30, 2008.
And Part C, actually talks about what happened on July 30, even though I'm writing it a full
week later. There's something about not being able to carry my desktop with me through
waiting rooms, hospital rooms, down the hall...you get the idea.
OK, you've heard me (well, actually...you've "read me" - but that just sounds weird...) talking
about "Temporal Decompression" surgery. I briefly described that the surgeon will be
removing two pieces of Avalon's skull, with hopes of reducing her intracranial pressure. What
I typed for the July 15, 2008 entry - is all we knew going into the procedure. We learned a
great deal more the morning of the R. side decompression, and in the days she was
hospitalized afterwards. I'll do my best to explain what we learned. For any nurses/docs out
there - forgive me for over-simplifying or incorrect spelling. I'm going to do my best to explain
what we were told.
Avalon has very small ventricles (vessels) in her brain. Repeated CT scans during periods of
known high intracranial pressure, have shown that Avalon 's ventricles do NOT dilate with
increased pressure. Normally, they should; but hers just don't. We have enough evidence
now to take that as a given, and officially label her with "Slit Ventricle Syndrome".
Slit Ventricle Syndrome is important to understanding some of Avalon's issues. Because her
ventricles are small, it makes it more difficult for her VP (ventriculo-peritoneal) shunt to
remove excess fluid from her brain. VP shunts have a catheter that sits within a ventricle
inside of the brain. The catheter draws fluid from within the brain and moves it ("shunts" it)
through a reservoir, a valve, and a series of tubes...down to an eventual dumping place within
the abdomen. Cerebral Spinal Fluid (CSF) is easily absorbed by the body within the
abdomen. No one has ever fully explained how the slit ventricle syndrome impedes the
uptake of fluid, but we've been told it does by several different sources. You'll just have to
take my word on it.
With Avalon's small ventricles, the type and placement of her VP shunt and its catheter are
very important. As I've referenced several times, the May 28, 2008 shunt surgery did not go
smoothly. Avalon's high ICP on July 9th, indicates that the new shunt is not operating in an
appropriate manner to sufficiently reduce her pressures. Without being able to open her
scalp and investigate the shunt, we have no ability to assess whether its working at all, or
what part of it is malfunctioning. That left us with few options.
After reviewing all possible data, Dr. Kosnik chose to recommend the older procedure of
temporal decompression. In a decompression, a piece of skull is removed from each side of
the face. The piece of skull is removed from behind the widest and strongest part of the jaw
muscle. The jaw muscle then takes the place of the removed bone, as a protective barrier for
the underlying brain. At the point of removal, the jaw muscle is extremely thick and very
strong, and acts as a very effective covering.
We had presumed that the surgeons simply cut a circle out of Avalon's skull. We learned we
were very incorrect in our assumption. The following paragraph is how the procedure was
explained to us. Warning - if you ick out easily...you might want to skip ahead...
The surgeon uses the same tool they always start with for any craniotomy or shunt surgery.
They first make a "bore hole" in her skull. After making the initial bore hole, they will use a
series of graduated tools. From the descriptions the nurse practitioner gave us, the "tools"
sound very much like a "tile nipper". Any of you home-improvement types will know what I
mean. A tile nipper has a tiny little set of jaws, that you use to "bite" off small pieces of
ceramic tile when you need to reshape tiles. However, unlike a hardware-store tile nipper -
the surgical tools retain the piece they bite off, within themselves.
Think about it. When you break tile, small shards shoot off in a zillion directions. Having
small pieces of bone shooting into the brain seems like a rather bad idea. So, the surgical
tools retain the pieces of bone they "bite" off. Apparently, there are several of these tools, in
graduated sizes. The surgeon starts in the middle of the hole, and slowly, meticulously, works
his way out - chipping away at the skull until he achieves a hole of the desired size. Lots of
you have asked if they kept the pieces of skull they harvested. Obviously not in this case -
the pieces were taken bit by bit. This surgery is different from a temporary decompression for
a major trauma - these holes were meant to be permanent.
After the hole has reached the desired size, a different tool is used to smooth the edge of the
opening. Once the edge is smooth, its treated with "bone wax". We presume that's to keep
the edge of the bone as smooth as possible. Again, that's logical. You wouldn't want any
rough edges to tear at the covering of the underlying brain. (bad...bad idea!)
Our description of the operation ended there. Obviously, they have to put back the jaw
muscle, close the skin, blah, blah, blah. I guess we really never questioned that part,
because it seemed pretty much like any other surgery. It was the hacking out of the bone that
was unique.
We learned that the purpose of the temporal decompression is to "increase the cranial vault".
In other words, its like suddenly making her skull bigger. Think of it like this, if you had a room
with an 8 foot ceiling, it would hold X amount of shaving cream. If you raise the ceiling to 10
feet - the shaving cream could expand a bit. So, the decompressions don't remove any of
Avalon's excess fluid - they merely give the fluid a larger space to fill. More space equals less
pressure, and hopefully, less negative side effects. Time will tell.
I won't lie, its been a daunting proposition knowing that there is no going back. The sections
of skull are gone - now and forever. I'm as sad as I am freaked out. I mean, basically - the
surgeons are kind of dismembering my baby. Its all pretty graphic.
I did find myself laughing a few times, though. I don't know if anyone else on the planet will
remember this - but this whole operation reminds me of a scene from the second Star Trek
Movie. (the one with the whales) In the movie, Chekov falls and sustains a brain injury. The
20th century docs are going to cut holes in his skull to relieve the pressure on his brain.
"Bones" is absolutely horrified - and calls the entire concept "barbaric". A few passes of the
magic twirly thing, and Chekov is as good as new. Yep, I'm a trekkie. I couldn't help but hear
Bones in my head...chastising me for agreeing to such nonsense. I'm not sure which is
worse...the fact that I remember such an obscure scene, or the fact that my kid is now living it!
But no matter what, the fact is, you do what you have to do - to keep her here. Every time I
catch myself in the I-can't-believe-this loop, I remind myself of a dear cancer friend, Joe. I can
only imagine what went through his mother's head when the doctors said his leg would have
to be amputated to save him from cancer. Joe is an amazing, funny, genuine young man -
whom we adore. I've never heard him complain or even remotely muse over his missing leg.
Quite the contrary, he enjoys showing his "bionic" leg to the little cancer kids. I suppose
that's the outlook I need to aspire to. Avalon hasn't lost anything but some random pieces of
bone. What we need to focus on is what she's gained....Life.
The rest of the nonsense is pretty inconsequential.
written on the actual day of July 30. Part B is exculpatory in nature. Its the description of the
actual procedure that Avalon went through on July 16, 2008, and again on July 30, 2008.
And Part C, actually talks about what happened on July 30, even though I'm writing it a full
week later. There's something about not being able to carry my desktop with me through
waiting rooms, hospital rooms, down the hall...you get the idea.
OK, you've heard me (well, actually...you've "read me" - but that just sounds weird...) talking
about "Temporal Decompression" surgery. I briefly described that the surgeon will be
removing two pieces of Avalon's skull, with hopes of reducing her intracranial pressure. What
I typed for the July 15, 2008 entry - is all we knew going into the procedure. We learned a
great deal more the morning of the R. side decompression, and in the days she was
hospitalized afterwards. I'll do my best to explain what we learned. For any nurses/docs out
there - forgive me for over-simplifying or incorrect spelling. I'm going to do my best to explain
what we were told.
Avalon has very small ventricles (vessels) in her brain. Repeated CT scans during periods of
known high intracranial pressure, have shown that Avalon 's ventricles do NOT dilate with
increased pressure. Normally, they should; but hers just don't. We have enough evidence
now to take that as a given, and officially label her with "Slit Ventricle Syndrome".
Slit Ventricle Syndrome is important to understanding some of Avalon's issues. Because her
ventricles are small, it makes it more difficult for her VP (ventriculo-peritoneal) shunt to
remove excess fluid from her brain. VP shunts have a catheter that sits within a ventricle
inside of the brain. The catheter draws fluid from within the brain and moves it ("shunts" it)
through a reservoir, a valve, and a series of tubes...down to an eventual dumping place within
the abdomen. Cerebral Spinal Fluid (CSF) is easily absorbed by the body within the
abdomen. No one has ever fully explained how the slit ventricle syndrome impedes the
uptake of fluid, but we've been told it does by several different sources. You'll just have to
take my word on it.
With Avalon's small ventricles, the type and placement of her VP shunt and its catheter are
very important. As I've referenced several times, the May 28, 2008 shunt surgery did not go
smoothly. Avalon's high ICP on July 9th, indicates that the new shunt is not operating in an
appropriate manner to sufficiently reduce her pressures. Without being able to open her
scalp and investigate the shunt, we have no ability to assess whether its working at all, or
what part of it is malfunctioning. That left us with few options.
After reviewing all possible data, Dr. Kosnik chose to recommend the older procedure of
temporal decompression. In a decompression, a piece of skull is removed from each side of
the face. The piece of skull is removed from behind the widest and strongest part of the jaw
muscle. The jaw muscle then takes the place of the removed bone, as a protective barrier for
the underlying brain. At the point of removal, the jaw muscle is extremely thick and very
strong, and acts as a very effective covering.
We had presumed that the surgeons simply cut a circle out of Avalon's skull. We learned we
were very incorrect in our assumption. The following paragraph is how the procedure was
explained to us. Warning - if you ick out easily...you might want to skip ahead...
The surgeon uses the same tool they always start with for any craniotomy or shunt surgery.
They first make a "bore hole" in her skull. After making the initial bore hole, they will use a
series of graduated tools. From the descriptions the nurse practitioner gave us, the "tools"
sound very much like a "tile nipper". Any of you home-improvement types will know what I
mean. A tile nipper has a tiny little set of jaws, that you use to "bite" off small pieces of
ceramic tile when you need to reshape tiles. However, unlike a hardware-store tile nipper -
the surgical tools retain the piece they bite off, within themselves.
Think about it. When you break tile, small shards shoot off in a zillion directions. Having
small pieces of bone shooting into the brain seems like a rather bad idea. So, the surgical
tools retain the pieces of bone they "bite" off. Apparently, there are several of these tools, in
graduated sizes. The surgeon starts in the middle of the hole, and slowly, meticulously, works
his way out - chipping away at the skull until he achieves a hole of the desired size. Lots of
you have asked if they kept the pieces of skull they harvested. Obviously not in this case -
the pieces were taken bit by bit. This surgery is different from a temporary decompression for
a major trauma - these holes were meant to be permanent.
After the hole has reached the desired size, a different tool is used to smooth the edge of the
opening. Once the edge is smooth, its treated with "bone wax". We presume that's to keep
the edge of the bone as smooth as possible. Again, that's logical. You wouldn't want any
rough edges to tear at the covering of the underlying brain. (bad...bad idea!)
Our description of the operation ended there. Obviously, they have to put back the jaw
muscle, close the skin, blah, blah, blah. I guess we really never questioned that part,
because it seemed pretty much like any other surgery. It was the hacking out of the bone that
was unique.
We learned that the purpose of the temporal decompression is to "increase the cranial vault".
In other words, its like suddenly making her skull bigger. Think of it like this, if you had a room
with an 8 foot ceiling, it would hold X amount of shaving cream. If you raise the ceiling to 10
feet - the shaving cream could expand a bit. So, the decompressions don't remove any of
Avalon's excess fluid - they merely give the fluid a larger space to fill. More space equals less
pressure, and hopefully, less negative side effects. Time will tell.
I won't lie, its been a daunting proposition knowing that there is no going back. The sections
of skull are gone - now and forever. I'm as sad as I am freaked out. I mean, basically - the
surgeons are kind of dismembering my baby. Its all pretty graphic.
I did find myself laughing a few times, though. I don't know if anyone else on the planet will
remember this - but this whole operation reminds me of a scene from the second Star Trek
Movie. (the one with the whales) In the movie, Chekov falls and sustains a brain injury. The
20th century docs are going to cut holes in his skull to relieve the pressure on his brain.
"Bones" is absolutely horrified - and calls the entire concept "barbaric". A few passes of the
magic twirly thing, and Chekov is as good as new. Yep, I'm a trekkie. I couldn't help but hear
Bones in my head...chastising me for agreeing to such nonsense. I'm not sure which is
worse...the fact that I remember such an obscure scene, or the fact that my kid is now living it!
But no matter what, the fact is, you do what you have to do - to keep her here. Every time I
catch myself in the I-can't-believe-this loop, I remind myself of a dear cancer friend, Joe. I can
only imagine what went through his mother's head when the doctors said his leg would have
to be amputated to save him from cancer. Joe is an amazing, funny, genuine young man -
whom we adore. I've never heard him complain or even remotely muse over his missing leg.
Quite the contrary, he enjoys showing his "bionic" leg to the little cancer kids. I suppose
that's the outlook I need to aspire to. Avalon hasn't lost anything but some random pieces of
bone. What we need to focus on is what she's gained....Life.
The rest of the nonsense is pretty inconsequential.
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