Wednesday, August 12, 2015

Bowel Management Bootcamp - Day Neverending....

(Mason was a happy guy today - he bought this purple monkey at the hospital with a gift card to celebrate getting through a week of bowel management bootcamp.  Then he promptly named it Grape Monkey.)
So today (Wednesday) was our follow up in clinic for Bowel Management Bootcamp.  I came in curious to see what the x-ray showed this morning because we've noticed over the course of the week that Mason's poop has become more solid - which is due to bootcamp asking us to lower the amount of miralax we give daily.  They usually get rid of miralax all together and I told them I was 90% sure that wouldn't work for Mason. Turns out I was right.  The x-ray today showed more stool in the colon - he's beginning to not get cleaned out all the way by the enema. 

After a bit of discussion on the options (increase miralax, increase the glycerin in his enema, etc) we went with increasing his miralax.  So that means our daily x-rays are not over with.  Drat.  We will continue to have x-rays and email reports to colorectal, who will email back results and any changes we need to make.

I'm not surprised, really.  Mason IS staying clean, which is great.  However slowly backing up over time is not going to be a good thing at all.  So we may have to work out some wonky routine where we do more miralax every few days to balance out the firming up of the stool (which took a full week because he was on double the dose of miralax before beginning bootcamp - doing a cap full per day).  Who knows?!  One thing I love is that just because our week is over doesn't mean the support is over.  They will continue to accept reports, order x-rays, and communicate daily with us as we figure out the right balance for Mason specifically. 

As for Mason - he doesn't care.  Poop happens.  Enemas happen.  They've been a daily part of his life for so long that he doesn't remember anything else.  I'm so grateful for my easygoing, cheerful little man!

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