I haven’t had time or energy to post an Ethan Update for a few days now, so today I made a commitment to myself that I would drink extra coffee and put time aside to do so.
Ethan is doing really well. He’s back to his normal jolly self. Playing with toys, giggling, and making friends with all the hospital peeps.
He is currently fluid-overloaded, which means that he’s carrying around way too much water in his little body. This has lowered his sodium to extremely low levels.
To rectify this, his nephrologists are increasing the amount of dialysis and giving him an extra dose of his sodium supplement.
He’s on full G-tube feeds and is transitioning to toddler formula/ nutrition. He’s been tolerating this change pretty well.
He started Bladder cycling, which is when we put saline into his bladder to mimic the kidneys and remind the bladder that it should be growing and peeing.
I’ll probably write a separate post about this new treatment (if anyone’s interested) rather than stretching this one out longer than necessary.
However, just to give you all an insight on how new and cool this treatment is, it started at CHOP and Ethan will be the eighth person ever to attempt to have it done here.
Other hospitals have received training and are also starting to implement it, but it’s incredibly new and potentially groundbreaking.
If it works it could save Ethan’s bladder and allow him to pee normally.
Thanks to everyone who has been reaching out for updates or to send their love 
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.Written by Sandy Mount