We had our second opinion appointment today. This might get long: TLDR- the Dr confirmed his diagnosis, it's a little worse than we thought, there are no treatment options right now.
The Dr looked at the scans that have been done. She thought the reflux was as bad as it can get on the left side, he has a torturous ureter (what should be a small straight tube looks more like intestines, large and meandering), and a dyplastic kidney with a cyst. The kidney may or may not function in the future. The right side also has reflux, which is news to us.
The good news is that all of the damage we are seeing was caused prior to birth and should not get worse unless he gets an infection. We will wait until he is 12-18 months to reassess.
I was surprised to hear that H had an issue with his scan done 6 months ago. We were told he was cleared of issues, but this nephrologist says the notes indicate he may have a duplicated system (2 ureters on one side).
My brother had kidney reflux and now both of my kids are showing kidney/bladder issues. Any siblings will have a 30-40% chance of the issue. This has us reassessing how many children we want to have. I don't want to jump into any decisions, but that part is weighing heavily on me.
If you read all of that, you are amazing. Thank you for letting me ramble about this because it really just helps to get it all out.
@unicornofthesea He will need surgery. It really depends on what happens but the bigger he gets the better the outcome. Of course he will be on antibiotics until he can have surgery and we don't want to prolong that too much either. The surgery will involve moving his ureter. If his kidney stops functioning they will likely remove it.
heartbot His condition makes him at high risk for UTIs and hypertention. We have to monitor his blood pressure. Long term he can't play contact sports or anything that risks damage the good kidney.
I'm glad that this doctor was more upfront with you about the diagnosis, and that there is a plan. It seems like the news was generally positive regarding these issues not severely affecting his quality of life. You're doing all you can for him right now, and he is in good hands. Thanks for sharing this update with us. I've been following your story since last year, when this was first detected and I'm rooting for you guys!
I'm glad that this doctor was more upfront with you about the diagnosis, and that there is a plan. It seems like the news was generally positive regarding these issues not severely affecting his quality of life. You're doing all you can for him right now, and he is in good hands. Thanks for sharing this update with us. I've been following your story since last year, when this was first detected and I'm rooting for you guys!
I am glad to hear that you got more informatiin, but sorry to hear that it is worse than originally thought. We are here to listen to whatever you need to get out.
I'm sorry this wasn't the best news for your family, Scotty. You are a strong mom, though, and will be able to take it one step at a time until you learn more. Hugs to your sweet LO.
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