Update Part 2

Fortunately, we already had an appointment scheduled with the doctor last Monday for Levi so it was easy to add her in and at a time that worked.

***As a side note since I know I briefly mentioned it a few months back, Levi has been having some GI issues, really since birth but that we have become aware of as we have gained more and more knowledge through the process with Charlie.  In having a conversation with the doctor at one point, we found out that there is a strong genetic component just as there is with something like asthma.  Therefore, if you have one child with motility issues there is a HIGH likelihood that any other children would as well. (No there are no other children!)  Instead of really starting anywhere else we took him straight to her.  She was able to pinpoint his condition fairly quickly and changed his diet in order to confirm her thinking.  This last appointment he was diagnosed with Malabsorption of Sucrose and Fecal Retention.  Something that is also extremely rare.  There is an enzyme that is believed to help with this and they want to start him on it.  There is a researcher at the hospital that has been waiting for a patient with this exact diagnoses so that they can study the condition and the effects of the enzyme.  For the past few months Levi has been on a strict diet that has not allowed him to have any fruit and a VERY limited amount of vegetables.  We can now start those back up in anticipation of this clinical trial and the work with the researcher.  Fingers crossed!***

 

His first piece of fruit in months!

Told the doctor that he couldn't wait to tell his teachers :)

Back to Charlie....I begged my mom to come so that we could focus on talking to the doctor not switching "Frozen" and "Planes" on for the kids every few seconds.  The doctor spent WELL over an hour with us just talking about Charlie.  She showed us the XRAY from Wednesday where she was backed up as high as you could see.  The return of symptoms and the fact that the Miralax wasn't doing what was anticipated was concerning to all in the room.  The hope with the Miralax is that it would break everything up in the colon and increase the frequency or amount that she was going, and it was doing neither.  She mentioned that the course of three capfuls over the weekend probably cleared her out significantly and that now she needed to start her on a stimulant laxative (something we had previously been trying to avoid.)  She had a new regimen of two capfuls of Miralax and a dose of Senna (Ex Lax) each day.  She also wanted to order new testing to be done immediately to look into what was causing this.  We have always known that Charlie's underlying issues were lower down in her GI tract but before now she was managed well (or at least we thought she was) on the Miralax.  Now that she is not, we are forced into getting a true diagnoses all the way down as it could be an incredibly different issue than what is happening in her stomach and small intestine.  After we were in the hospital in October the doctor had mentioned not doing any tests while she was being managed and now we are at the place where it has become completely necessary.  Yuck!

This first test is the same test that was performed when she was in the hospital in October, however it is in the very bottom part of the GI tract...as low as you can go.  It will check the function of the rectum.  Fortunately, it can be done as an outpatient.  We also discussed doing the colonic version of the test, but holding off until this one is complete and until she can gather a bit more information and try a few more medications since that one will require a longer hospital stay than the first.  She then sent us down for a final Xray to check to make sure the three capfuls cleaned her out and we were on our way.  We planned to check in at the end of the week with an email about how the new medication was going and with pictures.  Yep, pictures!

Overall, it was an incredibly discouraging appointment but we left with a plan.  I called the office the next morning and made an appointment for the test.  It would have been in two weeks....BUT...On Thursday as I was pulling out of the garage at school my phone rang.  It was the doctor wanting to discuss the results from her Xray on Monday (I will admit that I never thought she would be calling to give us the results.)  I knew right away just from the fact she was calling, and that it wasn't a nurse, that this was not going to be good.  She shared that the Xray had virtually no change.  Something that there certainly should have been on that much Miralax.  She basically did a bowel prep clean out and there was nothing.  She said that everything we saw over the weekend was just the miralax itself pushing through and bringing a little bit with it.  Yikes!!! Not good!!! She said that now we needed to take further action and do a "TRUE" colon clean out.  A nurse would be contacting us right away with instructions and we would go from there.  This would be pushing back any tests as it is vital to get her cleaned out before there are any problems from that.  We would speak at the beginning of the week to report how it went and reschedule the test.

So, we waited and at 5:30 on Friday as the nurses were leaving for the holiday weekend we got our instructions.  We have decided to wait to start the clean out until Easter morning.  We want her to be able to go to our family brunch, do the egg hunt, etc. before she is miserable.  Judson will stay home with her Monday and we will go from there.  They cautioned us that it could take more than once.  Fingers crossed this works so we don't have to do it using other methods!!!!

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.