Summer 2010 vs. 2011

I lost part of this post I started to write tonight and now I can't go back and redo it, so below is part of the original post and the cliff notes "start of the post"

We want a good summer, last summer sucked with all the hospital stays, tests, and surgery. We even were thinking about a family vacation outside of the chicago area, I never pulled the trigger my gut wouldn't let me.

With good reason it appears.

Thursday June 2nd - last day of school, a wonderful day, a happy day.

Friday June 3rd - the first day of Summer. We spent it at Children's Memorial Hospital.

Signs of shunt malfunction Thursday late at night, up most of the night, at ER by 1pm Friday. Imaging by 3pm.

Cameron now hates MRIs, cried hysterically during our April one, it was awful tears and convulsing.

Friday in anticipation I spent much our time waiting preparing him for the MRI. This would unfortunately be a case where no amount of preparation would help.

They wheeled us into the sub basement of the hospital, typically I will wait outside the basement machine (not the others, don't ask me why), but this time I told them I'd need to be in the machine with him due to recent issues. As soon as we got down the hallway Cameron saw the MRI machine and he flew into hysterics. It was terrible. By the time we got him into the tube he was at least no longer convulsing in tears so we could get the images, but I HATE this for him.

We returned to the ER room and he slipped back into a deep sleep. The resident comes in to report "Actually his ventricles look smaller!"

I get it she doesn't know our history and only knows that when dealing with Hydrocephalus you are looking to see if the ventricles are enlarged from the most recent films. She's almost excited by this prospect. Sorry to bring you down, but actually small ventricles aren't good for Cameron and this is not good news at all.

She was paged about 3 times in the 3 minutes we spent together, I sent her off to deal with the pages and come back with the attending so we can talk history and what this really means.

The full neurosurgery team returned in about an hour and I saw the images, not what I wanted to see, there is a significant change from two months ago...but we all agreed immediate surgery was not appropriate and we happily trotted back home with pretzels in hand.

So for the last 4 days I've been researching, as usual Cameron doesn't fit into the typical box of Hydrocephalus, and it requires me to advocate for him making sure his medical team is looking outside of this box. A great game of phone tag was played for two days straight with his neurosurgeon and finally tonight we talked. You'd think I'd feel some relief now that we have a plan, but I don't. I feel worse, I feel stuck, I feel we are starting the hell that was last summer all over again, I feel like I want to cry.

We're going to do another MRI, likely tomorrow. We talked about another surgery if the symptoms return. I shared my concerns about not wanting to repeat last summer, the Dr. appreciates my being proactive but made it clear that there is just no way to ever know what's going to happen and trying to figure him out is not easy.

Maybe I feel the most dread about having to take him for another MRI that he hates so much so soon after the last one.

So it starts again, listening with one ear open at night for sounds of distress, wondering if tomorrow is the day he'll wake up miserable and I'll lose the happy Cameron. I kept my CMH bag packed once we returned home last Friday, ready to go at a moments notice, the green bowl has been unearthed.

We've felt fortunate for the last hospital free 4 months, we were overjoyed with a "good" routine MRI report in April, and we've been grateful that the IEP season did not also bring us any health concerns (I can multi-task like a machine, but not when it involves my son's health).

I have do have faith we'll get to the bottom of this, but I sure wish I could snap my fingers and make it stop.