My 6 month old daughter was diagnosed with chronic kidney disease this week. She has renal dysplasia in both kidneys. She does not in kidney failure yet but she is on her way. Right now she has about 30 percent kidney function. I too have been searching for other mamas!
Hi to both of you. My daughter is not in kidney failure right now. She has Multicystic Dysplastic Kidney on the right so that kidney is totally nonfunctional. She also had, when she was younger, Renal Tubular Acidosis. Now at age 4 her body has compensated pretty well for the RTA so she no longer needs meds for that. When she was 2 1/2 her renal ultrasound showed cysts in the left kidney and we were told it would be a matter of time before that kidney also failed. But then when she was 3 1/2 the renal ultrasound did not show the cysts and the nephrologist believes that it was actually just parts of her renal pelvis creeping into the image because she has hydronephrosis in the left kidney. So that was a huge relief. But I guess my point is we have been on this roller coaster ride about her kidney function since she was born. For now she is doing well - her next renal ultrasound is in April and I'm hoping the hydronephrosis is better although I have concerns that it won't be (that's another story).
We spent his 6th thru 27th days of life in the NICU at a University hospital 2 hours from home and my other kids, but are home now, with a central access catheter, and a Peritoneal Dialysis catheter, monitoring labs before starting dialysis. He will get a kidney transplant as soon as he gets big enough and stable enough.
Because he was on bottles the whole time we were in the NICU, we're struggling with getting him back to the breast, and also struggling with keeping him at the breast long enough to complete a feed to keep growing. Some of his feedings are still from bottle because he's on a protein powder to help his growth, also.
We're facing the somewhat daunting task right now of making an informed decision about vaccines. I've not vaccinated the other two, but the other two haven't faced the prospect of spending the rest of their lives on anti-rejection medicines that suppress their immune systems, you know? I'm not even sure if the transplant team would consider a transplant if he wasn't fully vaccinated, and I'm not entirely certain what they would consider "fully vaccinated." Sigh.
I'm so sorry you are dealing with this. And I'm sorry I didn't get a chance to respond until now - I was out of town and could read but not really respond on my phone.
At what age do you expect him to qualify for a transplant?
I remember considering the whole vax thing in relation to the possibility of post-transplant anti-rejection meds. I remember thinking how every time I think I know how I feel about something a situation comes along to challenge my beliefs again.
Positive energy your way....