It's complicated.

The coaster has left the station, and I don't think we've seen the likes of this one since about a year ago.

Cameron took a bad fall at home, landing of course on his head this Wednesday. As a precaution we saw our pediatrician, he checked out ok and we went home to rest. 3 hours later he awoke in intense pain, given his high tolerance for pain I was worried but not ready to head to the ER. Until of course the pattern repeated 90 minutes later. A call to the pediatrician led us to the ER. We couldn't be certain if Cameron was suffering from a concussion or shunt complication.

Upon arrival at the ER Cameron seemed to have "come around", I spent the better part of the next hour thinking to myself "why are we here" as the triage nurse said, "you just bought yourself a CT scan". I even lamented to our neighbor before we left for the hospital I was convinced that all this pain was likely going to be sinus pressure, as Connor has been battling croup. Today, she shared with me how she was convinced I was off my rocker and stressed out because of my insistence this would all be nothing.

Soon enough Cameron validated our trip as he started to slip away just after the CT scan and prior to x-ray. He fell into a deep sleep and just as the ER attending left the room Cameron woke up and puked all over.

The ER was packed, so 3 hours into our arrival a Neurosurgery resident came to chat with me and asked "Mom, what do you think is going on" should have been my first sign, but I went on about how while these symptoms mimic past shunt issues I really bet this is sinus pain. He let me go on for about 5 minutes and then said "I think you need to come look at his scans"

I blurted out an expletive as we reviewed the scans. Surgery was discussed and it was likely could wait till Thursday.

Wouldn't you know it by the time we were admitted to 3W (midnight!) Cameron was all chatty and seemingly better. Zofran and an IV seemed to help, but we were all certain he'd revert to slipping away as he has been known to do. But not this time, he remained stable for the next 24 hours.

Friday morning Dr. Bowman (Cameron's neurosurgeon)met with us bedside, she doesn't like the size of his ventricles at all.
While she initially was thinking we'd do the surgery today or this weekend, after much discussion we all agreed to sit tight. I mean who does "elective" brain surgery, right?!?

He will need the surgery. It will involve implanting the valve and anti-siphon device in a different manner in an effort to prevent this 6 month cycle from happening. Here's hoping it works. Right now we are scheduled to see the team in just over a week for a previously scheduled MRI, rather convenient. So we were going to find all this out soon enough. Assuming Cameron remains stable till then we'll make a surgical plan at that appointment, or we'll end up back in the ER if he shows any malfunction signs. We are all crossing our fingers to get at least two more good weeks.

The name for all of this is Slit Ventricle Syndrome, which means his shunt is over draining. This is not all that common in Hydrocephalus, and treatment is complicated. Some children tolerate their ventricles being small just fine, but a small percentage have a problem. Cameron happens to fall into this category. Now that his ventricles are essentially collapsed he is at a higher risk for a true malfunction as the catheter can easily clog with choroid plexus or blood as there is little to no CSF.

Dr. Bowman is conservative and I know she'd never send us home if there were any serious risks, but we are on high alert and you can bet I'll be more neurotic than usual.

While I was truly surprised at the dramatic change in imagining from late November I shouldn't be so surprised. After our ER visit in November I was all but certain he'd need a surgery by February based on some very subtle changes he's exhibiting over the past few months.

Every night they showered Cameron (in his bed!)to prepare him for surgery and placed new IVs. Finally, last night when they couldn't get the "stick" we all agreed to just give him a break from the IV. Do you know what he says...

"I thought I was getting an IV?"

This is after they've just blown a vein. Not a tear is shed and he wants to know where his IV is?

Thanks for all the well wishes and support, we'll do our best to keep the blog updated as things develop. While in the hospital Facebook is always easier to send updates.

While this hasn't been fun and we are not looking forward to what's to come and all the worry, a dear friend shared some sage advice she heard on the same hospital floor some 23 years ago:

"I don't care how many times the surgery has to be done because he is alive and when we leave the hospital he runs and plays and gets to be a bo"y

May that always be true for Cameron.