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....