Home

Four days in the hospital, only two weeks post our last two day stay, it's a lot to take. The fear of what's going on, and no answers only made it worse. Standing at his bedside for close to 96 hours straight, little sleep, two quick showers in the hospital and coffee every morning brought in by Aunt Amy - god bless you Amy.

We came home Thursday afternoon after four days of relentless fevers at 103. The minute we thought we kicked it out of him, he'd spike. Ironically it was not the fever that brought us to the hospital, but it's what kept us there. We initially went to the hospital because Cameron began throwing up, crying with intense head pain and slipping away from us. We pushed this trip off 12 hours before I just gave in and took him, once our pediatrician couldn't find the source of the fever (ears, throat, nose etc.) once the head pain and vomiting starting Neurosurgery directed us to come in. There were many cultures, pricks and swabs. Cameron hated the throat swab the most and I always hate the Shunt tap the most (they stick a needle into his head right where the shunt valve is an draw CSF out of the valve.)

Cameron didn't even wince. I looked away. I am telling you this boy is as tough as they come.

Cameron has been home for five days now, he's feeling better and the source of his fever was finally uncovered Friday evening when he awoke from a snooze on the couch with a red rash all over him. Matt panicked, I rejoiced! "It's ROSEOLA!!!" Never have I been so overjoyed to see a child with a rash. I dialed up our pediatrician to share the good news, to which he replied "You just made my weekend!"

Yes, this all sounds crazy, but a source for the fever is all we ever wanted. Do we think there was some intermittent shunt issues on Monday, yes, we do. But images are stable and honestly all anyone wanted to focus on was getting Cameron to wake up and feel better, fever free. It took days, but it happened. Of course based on my research it's a bit rare for a nearly 6 year old to get Roseola, and he seemed to get a pretty hefty strain of it. But it's over.

I am sure many of your own babies or children you know had Roseola and you might be thinking that's why they were in the hospital? I'd agree with you, if Cameron didn't have all this other stuff going on, the number of shunted children who end up in the hospital for purely observation is hefty. You just can't risk missing something.

Now we take a deep breath, enjoy our time at home and hope it's a long time before we return. Cameron is set up for a few planned Urology tests in early March followed by his MRI at the end of the month.

Coming home is always hard, as we have to then address the emotions of what's just transpired and the toll it takes on our family as whole. Cameron missed Valentine's Day, the 100 days of school celebration and much more. That sucks, a lot. This is when Matt and I start to feel like no one could ever understand how hard this all is on us and even more so, on Cameron. You may think he doesn't remember this stuff, trust me he does. He's asked me consecutively every morning before school "Did I miss clash day?" Inconsequential in the grand scheme of things, true, but how can I promise my son that he'll be there next year. I can't.

Thursday as we were awaiting the final ok to be discharged I walked out of the room for less than a minute to see where our nurse was. As I walk back in I see Cameron is upset, he's not crying but something isn't right. I ask him what's wrong, he says nothing and begins to cry really hard, I worry he's in pain again. He won't say anything and through a thumb in his mouth whispers "nothing" every time I ask what's wrong... He doesn't want to talk about what's really wrong.

The neurosurgery NP comes by and sees him, she becomes worried, I pull her aside and we both agree he just needs to go home. If he's not ok later I will just bring him back, but we need to get him out of this hospital. This is the first time we've seen Cameron express some emotion related to his health, there were no words. Upon arrival at home and when rejoined with his many toys he started talking again, playing and sounding happy.

We are slowly going to work with Cameron to explain his conditions in a manner that is age appropriate in hopes that he can learn to express how he's feeling emotionally and physically as he ages. As Dr. Bowman said one night "Shunts are hard".

They are, and this is not an easy path we are on, I vaguely remember 2008 to early 2010 we were humming along, there were few ER visits, hospital stays, even a time when the neurosurgeon said "I wish all my hydrocephalus patients had ventricles like Cameron's" how things have changed. The therapies and developmental issues will always be there but the constant medical worry ...ugh... Some days you just have to remind yourself to breathe.

Thank you to all my Riverside friends for helping with Connor, the offers to cook meals, and to Gramma Ellen for hanging with Connor for a day, knowing he could stay in his own house for more than one hour in the morning put us all at ease. You have a new buddy that's for sure, not only in Connor, but I might hire you to do my laundry all the time! Hugs to the Burkett's for the awesome balloons and to everyone for the many well wishes.

Shamless plug: Get your tickets to Cameron Can! These kiddos with Hydrocephalus need you! I'll post soon updating you on our Grant Recipient Maureen Stathopoulos, we are very excited to be doing good for other children and families like our own.


Here's Cameron killing an entire small cheese pizza on Monday! Feeling good....

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.