Eff You Spina Bifida!!

Having a real “eff you spina bifida” night here. Everything had been going fine. We went to the beach, didn’t do the cone for a couple of nights. Got home, got back to our routine and I thought we were doing okay. Then cathing went back and forth between dismal output a couple of times a day, and leaking considerably between caths. And we’re having aftershocks regularly when we hadn’t had any issues.
I bumped her solution down as the aftershocks weren’t very messy at all, mostly water (even when output at time of cone was ‘ideal’ consistency). They have lessened, but still happening.
Then tonight we are 3 hr after enema time and she’s had at least 4 little aftershocks. No activity to speak of to jostle things. We’ve just been relaxed and chillin’.

What. The. Flip. Is going on?!? I’m just so weary right now.

I feel like all day every day has to do with the bathroom. We’re cathing, coning, or cleaning up. 😩😩

JUST when I thought we had things figured out and she was even wearing underwear (no pad!) all day! No problems. Just pad at night since we don’t cath overnight. And even that was often dry in the morning.

Everything seemed to be going so well and now it all seems so wrong.



One thought on “Eff You Spina Bifida!!

  1. I feel ya. We are currently on tethered cord alert with our non ambulatory SB child. His father and I have spotted differences in his bladder and bowel function recently. I have called our urologist asking for a second urodynamics test before we proceed with another operation on our little guy. My child is scheduled to have a urodynamics done tomorrow morning at the hospital and then it’s a question of nervously and impatiently waiting for the results to come back. Then we will see the urologist to discuss next steps. Sigh. We did just have another foot procedure before Christmas. Spina Bifida is a pain in the ass sometimes. His therapists have also noted changes in his bladder health as well. Tethered cord will be the death of me.

    I’ve known other SB children who had altered physical abilities or issues with hydrocephalus. My son does not have a shunt. His hydrocephalus managed to resolve itself on its own without any medical intervention whatsoever. Amazing. But I’m aware that many kids with Spina Bifida do end up having the standard brain surgery shortly after birth. We are lucky in that aspect of it. Very fortunate indeed. And for that I’m grateful. One less thing for us to deal with.

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