The latest

Forgive me for the lack of update following the MRI last week.
Below is a long summary of the results.
Today it's 6:30am and we've been admitted to Children's trying to figure out what's going on with our guy.
He's been in pain and asleep for close to 24 hours now. As usual imaging is not helping us determine definitively
What is going on. A high fever seems to be throwing everyone off course and leading us to believe it's a virus. But his blood counts are not crazy.

Rounds are soon, hope to know more. Forgive the writing, on my phone.

Below is last week's email summary.
Cameron had an MRI at 7:30am this morning, and saw Dr. Bowman (neurosurgeon)
at 9am, followed by Orthopaedics Dr. Sawroop.

As usual Cameron is throwing us a curveball and his ventricles have returned
to their "pre" collapsed state, meaning his baseline.  This of course
shocked all of us, including Dr. Bowman.  

What's puzzling is we are still seeing signs of a problem in Cameron's
behaviors and the intense pain he is in (at times).  Saturday during the day
he was not at all himself and that evening was in a ton of pain, a trip to
the hospital was debated but we waited it out at home.  He did wake up
feeling better.  

Over the last 10 days we've seen many subtle signs and had the one true
"episode" of visible pain.  He is struggling at school and seemingly not
with us at times.  

Further there were two days last week where he shunt line was very swollen
and red by his neck.  We did not go to the hospital as it went away in both
cases after two hours.  After showing Dr. Bowman the photos she said "I
would have LOVED an image of his ventricles at that moment".  Of course the
one time I don't take him to the hospital.  All of this is making me doubt
myself.  

She believes his body was pushing CSF over the ventricle and the shunt or
catheter was clogged at some point and fluid was pooling at his neck and
causing the shunt tube to bulge because there was so much fluid in there.
So you could theorize 1000 ways what this all means and Dr. Bowman does not
have any answers.

Her suggestion is we wait 6 weeks and do another MRI, continue to monitor
and log symptoms.  Her hope is we give his brain some time to regulate
itself back to his fuller ventricles and ideally these symptoms we are
seeing start going away.  That would be great!

There was some talk of an EEG, and ICP (intracranial pressure monitoring)
but these were just things that were being thrown up against the wall.  

Bottom line we are not doing anything right now, outside of continuing to
monitor Cameron and quite frankly live on edge.  This appointment, although
good to hear we aren't going into surgery tomorrow, was very frustrating,
it's hard to see all these signs that are standard Shunt complication
symptoms and yet we are not going to do anything about it???

So we are waiting for any of these options:
1) Acute Malfunction (meaning a serious problem that without question
requires surgical intervention)
2) Symptoms we see now slowly go away and Cameron comes back to us as close
to 100% baseline, images on 3/20 are good and we all cheer
3) Symptoms persist, we log, we go to the ER during intense episodes and end
up in surgery should his vents collapse again or the symptoms just become
too much for any of us to bear not doing something - surgery? or the other
options above.  

Regardless of what option becomes reality the bottom line is the next few
days and weeks are going to be difficult, any small sign and we worry, the
bigger signs we worry more and wonder should we be at the hospital or wait
it out at home?

 We've already spent the better part of the last year and a half in this
limbo spot feeling a false sense of security at times.  The last 10 days
have really sucked,  I can't explain it properly but the worry is killing me
inside.  The prospect and anticipation of surgery and just wanting to make
Cameron feel better is daunting.  

I posed the question to Dr. Bowman, is it possible this is just how
Cameron's life with Hydrocephalus is going to be?  Personality changes,
intense headaches, gait disturbances mixed in with periods of feeling ok?
She doesn't know.  And I don't want that life for Cameron on many levels,
most of all for the impact this all has had on his performance in school.  

Yes, everyday I tell myself it could be worse, we are lucky for the all the
things Cameron is able to do and this is what keeps me going.  He does not
have any number of terminal or terrible diseases, he can walk, talk, feed
himself and so on.  But there is no alternative scenario that can take away
the worry and fear of seeing your child in pain and knowing something is
wrong with his brain and not being able to know what the ultimate impact
will be.  Asking yourself as you spend another sleepless night trying to
comfort him out of the pain if this is the time to take him to the hospital
because it could be really bad?  

The truth is Hydrocephalus for Cameron has never been typical, looking at
expected outcomes and what has worked for other children does not help us.
At times I am left fearing the worst will one day happen.  

So for the next 6 weeks my gut will steer me, as it has yet to steer me
wrong in the past.  

May it be wrong this time around, as I am all but certain this shunt needs
to be fixed, but I am not about to send Cameron into an "elective" brain
surgery to have some major complication or infection be the result.  I could
never forgive myself.