Stuck

It's a beautiful 4th of July weekend, truly beautiful. Cameron and I have been posted in our bed since 7am and with each passing hour he gets worse. The CVS has reared it's ugly head again.

We had a short lived episode about a week ago, headed off to Children's at 2am to get the blood work done and hopefully get him out of the episode fast. In typical Cameron fashion, he presented in the ED (emergency dept) to not be in a full blown episode, I told them as such, we did the blood work, got some Zofran and were home by 7am.

This week I spoke with the Dr's to determine if we needed to repeat the blood work b/c I wasn't sure now if it was really a true CVS episode. Who knows if it was...

What I do know is we are now in the middle of full blown episode and it sucks!

You just lay next to Cameron, try to get him comfortable and nothing works, he wriths around in pain, the nauseau is unbearable, and then finally when he throws up for a few moments you see he feels better and then he just collapses. If we're lucky he goes into a deep sleep for a little bit, that's easier to watch than the writhing around in bed.

So it's 1pm and he's thrown up 6 times. I am playing the game in my head - do we go to the ED to get fluids and some drugs to try and snap him out of the episode or play it out at home a little longer. I gave him zofran at 7am as I saw the episode approaching, and actually thought I had helped as he didn't actually throw up for an hour after that, but since then it's been downhill.

In the back of my head, I worry is this the time it's the shunt? I truly believe it's not, but every single time this happens we have to wonder. Even the Dr told me again this week to always remember that there is no way to know.

So this is our life now, instead of going to the Riverside parade today, loading up on candy, seeing all the fire trucks and Judy Barr Topinka(yep, that's right she's a Riverside resident!) Cameron is miserable and I am logging the episode, hovering over him waiting for the next round of vomit.

We see the GI doc in Clinic this coming Friday, I am hopeful we'll come up with a plan to prevent episodes.

It's times like these that remind me how different our lives our from many, we worry about Cameron most every moment, we walk around on eggshells, we try to work our therapy homework into each day, we fight with insurance, we fight with hospitals, we fight with doctors to not give our son any more radiation. We fight to have a typical July 4th surrounded by friends, instead we are lying in bed on this beautiful sunny day.


Here's hoping the episode passes soon.