Update Part 1

A little over a month ago we had Charlie's routine appointment with her motility specialist at CHLA.  At this appointment we reported how the previous three months had been going with Charlie.  Overall, she had been doing really well.  Let's just say her poop still tended to smell a bit on the rough side and she did throw up a few days beforehand.  This peeked the interest of the doctor.  She mentioned working towards predicting when Charlie was going to throw up so that we could avoid having it happen at all.  Sounded good to me!  The smell was likely a sign of a bacterial build up in her colon and thus making her throw up and have other potential problems.  She wanted to up her dose of Miralax to two capfuls a day to try to clear this out.  We would do this regime for a week and then go back down to our once a day dosage.  Perfect timing because we were scheduled to leave on vacation in just over a week.

Everything went well and we left for our cruise....this was the beginning of a very nightmarish past few weeks.  Once we left, Charlie was thrown a GI curve ball.  Her condition has been hard to manage ever since.  While we were gone her poop was all over the map (constipated or diarrhea) and she spent a morning throwing up.  Certainly fun while we were all cramped in a cabin on a cruise ship.  When we got off the ship we called the doctor as she had instructed to do if the smell was back (as it was) and if she threw up again.  The doctor wanted us to up her Miralax to two capfuls a day again for a week and call her back.  And so we did.  We got the same results.

The morning I went back to work from spring break I went in to wake her up to find her asleep in dried vomit.  It was undigested food from the night before.  For the past few weeks her stomach has been as distended as it has ever been.  She hasn't been eating well at all, and now we are fairly concerned. I called and left a message for the doctor and heard back last Wednesday afternoon.  They wanted us to come right over to do a KUB XRAY.  They wanted a clear picture of her entire stomach to see what was going on.  While sitting in the assistant director's office at school I finally started crying.  There was a lot going on.  I was overwhelmed at what we could possibly be facing again, there was a classroom of kids waiting for me to teach math, the need to grab her and run out to drive downtown for an X-ray, figuring out getting Levi from school, worrying about the continued exposure to radiation, etc.

I took a deep breathe, walked in to my classroom, taught my math class, and we left for the X-ray.  After our last stay, she has become wary of the hospital and tends to freak out a bit when we go.  When we walked into the X-ray room she asked to go home.  She was a trooper though and when we were done Charlie yelled, "I did it!" Then we got to wait for results.  They called that Friday morning to tell us that the X-ray showed that she was incredibly backed up (on two capfuls on Miralax, mind you) and that we needed to increase her Miralax to 3 capfuls a day for the weekend.  The doctor also wanted to see her on Monday.  Let's just say it was incredibly challenging to go anywhere last weekend, but at least we would be able to sit down with the doctor and go over everything and ask our questions, talk about a plan, etc.