Cameron loves this song by Katy Perry, he plays it
nonstop and it's a perfect summary for how he's doing post his 5th brain
surgery. WIDE AWAKE! (yes occasionally my son listens to Katy Perry, go ahead judge me if you must)
We have high hopes he will show us in the
coming weeks (and months) how well this shunt is going to work for him, and how
wide awake he can be in school, camp, and at home when his brain is cooperating
with him.
Here's the deal, he is a rock star, brain surgery
#5 was by far the BEST recovery he's ever had. I know he had so many pulling for him, thank you!!!
If you like to read and have time to kill, here's the full back story.
Cameron has been struggling for the better part of
this year, it's subtle things; being sleepy, irritable, gait
disturbances, more distracted at school and home, shorter fuse and then some
episodic headaches, all of this up and down for months. The minute we would think he’s “ok” signs
would appear and you just go crazy thinking you are making something of
nothing?
We had actually gotten to a point where I
felt as though no physician was getting my concerns, so I just backed off the
idea it was his shunt and two months ago we booked an appointment to see a
psychiatrist to rule out ADHD.
It was Tuesday morning, June 26th and we met with the team of
psychiatrist's at Lurie Children's to review their thoughts on our first
appointment and all data we presented. In 20 minutes they summed up
while sure he has some signs of ADHD, he’s also a 6 year old boy and he’s
allowed to have some of these signs, throw temper tantrums, be distracted and
so on. As I listened to this and Cameron
dozed off to sleep in my arms (it was 9:30am) I thought here we go again, another
“non-answer”. The physician told me to
just let him be and try not to figure out they why’s and what’s.
As I began to speak my voice started cracking, I worked hard to hold
back the tears, I can’t stand NON-ANSWERS.
I’ve worked in vain for many years to try and get answers about many of
Cameron’s conditions.
· Dandy
Walker Variant (I gave up years ago and I’m ok with it)
· Cyclic
Vomiting Syndrome-how could my child really have this? Even traveling to Milwaukee
to speak with the expert.
MD is not behind my name,
although I’ve been asked. I am not I tell them, I have been doing “this” for 6 years and I am
his mother and I know when something is wrong with my child. I am officially going to add MD to my name
(Mother Dammit) they’ll love my use of slang, don’t ya think ?!?!
Of course I didn't want to add ADHD on our list, I also didn't want someone to not address what's been going on, as I have been saying for months something is wrong with him, as have his teachers at school and therapists.
Ok moving back to the psychiatrist, I spoke about my frustrations and
then finally came around to their suggestion, maybe I should just stop worrying
about this and chalk it up to his age. Eventually
starting to guilt myself into thinking this up and down life Cameron’s been
leading for the last 4 months was all made up in my head. We walked out of Children’s and onto Michigan
Avenue for a day of fun with cousins Brooke and Lauren who are staying with us
for the week.
I pushed it all out of my head…until 6pm that same night. Cameron got sick, within 30 minutes of having
the time of his life, laughing and playing with Brooke, Lauren and Connor. Matt screamed for me and the process
began. Throwing up, terrible head pain
and a lifeless boy who only minutes ago was loving life.
After several rounds our pediatrician sent us to the ED. By 1am Cameron was admitted. He did enjoy all the new scanning rooms at
Lurie, they are pretty awesome, the CT scan looks like a submarine and X ray is
a Navy Pier Mural complete with twinkling stars on the ceiling to distract the
kids on the table. It’s SUPER quiet in
the ED, not at all like the old hospital, almost eerie. I used to walk out of our room and basically
fall on top of a nurse, at Lurie I stepped out once and couldn’t find a sole
within earshot.
Scans complete and of course the typical “his ventricles are not
enlarged”. As I spoke to the Resident Neurosurgeon, I had to bring him up to
speed on Cameron and do my usual talk about how he’s different and not your
textbook case. I knew well enough from
past experience to not push matters and wait to actually see our Neurosurgeon.
2:30am we were all tucked in to our private room, such an improvement
vs. the 6 bed acute care at CMH. Cameron’s
heart rate was on the low end, putting me on the edge of my bed literally, (I
actually had the closest thing to a bed in a hospital – wonderful). By morning
he seemed better and only one bought of nausea. Head pain was consistent but
not debilitating thanks to some drugs. I
was thinking we’ll go home and wait this out till another round hits.
About 3pm Wednesday we saw Dr. Bowman she ordered an MRI, which was done in record time, and we soon learned his ventricles were
actually quite small and it was best to do surgery now. I believe her exact words were “We’ve been
looking for an excuse to do this so let’s do it”. Really?
Had WE been looking for an excuse?
I know I was because I felt strongly we were back in the small
ventricles area but I didn’t realize Dr. Bowman felt this way. Vindication! I finally felt like she
understood me, and most importantly Cameron.
While her and I had actually not spoken since clinic in February she
clearly has been watching and listening behind the scenes to our scans and
discussions with other doctors. She
totally gets it. She is also the most
conservative NSG I know at Children’s, so if she says it’s time, it is.
7:30 pm we met with Dr. Bowman in pre-op and reviewed the plan.
Including putting Cameron’s beloved stinky dog Neigh Neigh into a sealed and
labeled bag so he didn’t get lost during transport (circa 2007).
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| Cameron cuddles with a plastic bag holding Neigh Neigh |
Surgical Plan (for those technical people): A new valve and Delta Chamber (anti-siphon device) were
inserted, this is what we’ve done in the past but for the last two years it has
not stopped the cycle of his ventricles overdraining. This time the Delta Chamber was moved a few
inches down the catheter to allow for a higher pressure setting. Cameron is her only patient who has this
issue with being symptomatic with smaller ventricles. It’s quite common for this to happen to
hydrocephalus patients to get small ventricles, often termed being
“shunt dependent”, but it’s much less
common for these kids to become sick as a result and leads to a lot of misdiagnosis
and frustration (cyclic vomiting anyone?!?).
We followed our routine of mom dressing up in scrubs, getting Cameron
into the OR and walking out as they put him under. Never gets easier.
By 10pm we saw Cameron in recovery, he was naked as a jay bird nurse
said, he didn’t want anything but blankets on.
Ok!
His face was really red from all the tape and really sleepy, some drugs stopped the tears from the head pain. Being # 5 of these surgeries
we know what to expect on his head so it’s not as much of a shock. He has two large incisions on his right side.
We got settled back in our room
around 11:30pm Cameron and Dad fell asleep watching Cars. Mom got some much
needed sleep on the pull out couch.
By Thursday morning he was feeling pretty good, hit the play room for face painting, took
a snooze and had his cousins come for a visit!
Last does of medication was complete by 5pm and we hit the road for
home. Record recovery!!!
Another summer started with brain surgery and no swimming for three
weeks, but if this new valve set up can finally crack the code of Cameron’s
brain it’s a small price to pay.
He’ll be followed with an MRI in 3 weeks.
With any shunt revision there are inherent risks, infection for up to 6
months post insertion, general shunt malfunction and of course in our case this
higher pressure could backfire causing the ventricles to become too big. As always we’re on alert.
Thanks to all for all the FB love, texts, calls and emails. Knowing how many people are praying and supporting Cameron (and us) means more than we can express. Let's hope June 2013 does not bring a surgery, this is year 3 of a hospital summers, enough already, don't ya think!
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| Fun in the Life Center with Connor and Lauren |
