She’s 5, please help

We received the diagnostic Tuesday my five year old daughter has stage 3a CKD with scaring on her kidneys already. She has stage 5 VUR. There was none of the symptoms associated with CKD. We eat cleaner than anyone I know. I’ve been gaslight for years that her constant bed wetting, aggressive thirst, and slight fatigue (she stopped napping) was just normal. It ramped up recently and I couldn’t let it go. Luckily we have a new pediatrician who’s amazing. I got referrals to testing and seeing specialist and sure enough here we are. They put her on iron, sodium citrate citric acid, and nitrofurabtoin. She’s a completely different kid, no more moodiness, no more fatigue. It feels like my child just returned to her healthy happy self, and now she’s going to be taken again.

We’re at the beginning of this. Surgery for urology being planned to fix the VUR. Our medical team is top rated in the country and luckily my husband’s job gives the best insurance.

I’ve never heard of any of this before Tuesday. As a mom I’m terrified for the future of my child. I want to know everything the bad, the worst, all of it. I want to know things I should be asking, what I can do to help facilitate this shit show as best as I can.

If donation is on the table, I’ll donate without hesitation. I’m O+, so atleast we have that going for us. I’ve been trying to keep our home life as normal as possible and not talking about anything bad in front of her. I am honest with her about what is coming and what medical procedures she’s having at all times, age appropriate as possible. I don’t believe in not telling her or lying, she’s a very smart kid.

Please don’t hold back.