Our SBS Story

Info Overload Update

There is so much to catch up on… phew- it’s been tough for me to muster up the time (and energy) to write a recap.

right before our last trip to Boston… my Grandpa, our family’s rock passed away at 97 and my dad went to John’s Hopkins for major pancreatic surgery. The timing was crazy but my in-laws and I traveled together to Boston for Camden’s appointment and that visit (as I shared in a previous post) left us with exciting news- trialing no use of the broviac! I was excited (but guarded- which is my new normal as an SBS mom). While at clinic, Camden was battling diarrhea from the use of amoxicillin for a double ear infection…. poor guy. Camden isn’t often sick- we keep him on the sunny side of health (or try to) but we started pre-school 1 day a week and we were quickly introduced to the back and forth exchange of germs in toddlers and it hit us hard… SO- weaning from IV fluids AND some vomiting and diarrhea was the perfect storm and we found ourselves back in the hospital with what we thought was a virus… and ended up being a kidney injury and it totally knocked us down, we weren’t expecting THAT. The crazy thing is that Camden’s labs showed that he was perfectly hydrated (we’ve been all over hydrating him- knowing very well that without the IV we needed to do double… scratch that triple duty with keeping up with hydration)- so I don’t know when/how/or where but at some point between our trip to Boston and our (1-week later) admission to the ER his kidneys took a hit- but were on their way to recovery. We stayed in the hospital for 4 days to make sure that the kidneys were in fact improving in function and this set-back was reversible- it was- it is- and we are back at it. Camden is feeling better and we are hopeful for forward motion. We lost a pound through this setback which was heartbreaking for me- we work really really…. reeeeeallly hard for a pound. The optimist in me knows that he’ll gain that weight back and then some and this loss is only because of the illness and not an issue of absorption.

This setback is a reminder that:

With or without a broviac we are up against challenges with SBS

Our future includes fighting against dehydration and malnutrition and these things can have a real and very scary impact on Camden’s body

SBS isn’t cured- it evolves

So as we move forward and continue along with the trial wean (with some IV bolus hydration to give the kidneys some extra love) we will stay strong and continue to fight with the same fervor and love like hell… because that’s what we do! We are Camden Strong! XO Meags


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