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Pyleoplasty coming up for my 2 year old son
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CSTKari posted:
Hi, I am new here.

I figure I will share some background.

There is significant kidney disease on my husband's side of the family. His sister was born with one kidney and was in sepsis at a couple of months old due to what I believe were unknown ureter issues too and she had infections go untreated due to not knowing. She was pretty close to dire situation by the time she arrived at the hospital. They did emergency surgery when the realized this kid only has one kidney and is in sepsis. She is now in her mid-thirties and has been told after another surgery and lots of overseeing to start looking for a live donor now rather than waiting because it won't be long. There is also a cousin waiting on a donor kidney.

So imagine our concern and worry when at 20 weeks pregnant they said your son has hydronephrosis. They kept telling us don't worry it usually resolves itself by xx and then they'd check and it was bigger or the same. Then they said don't worry sometimes it is gone by the time they are born. They did an ultrasound and nope it was still there. He has been followed since birth by a pediatric urologist. At a few months old he developed his first kidney infection and we ended up putting him on prophylactic antibiotics since then he hasn't had many infections at all but has had them.

So far at his renal scans and his ultrasounds we've een able to say he doesn't need surgery right now. He just had them done at the end of May and had a cystoscopy as well. He is scheduled as a result of those tests for a Pyleoplasty July 5th. He doesn't have permanent damage yet to his kidney but we are at a crucial point. His function is okay but his drain time isn't great and the time it takes with lasik to start draining was the most concerning it seems. Also, the blood flow to his kidney has gotten worse (I am unsure what that really means for him and this surgery).

I work as a surgical technologist so I understand a lot of what he will be going through surgery wise but I don't see patients during their healing time.

The surgeon expects his surgery will take 6 hours (they will do a retrograde pyelogram just before as well).

I am looking for what to expect for him after surgery. I am told he will likely have a nephrostomy tube, a drain coming from his ureter at the repair, a wound drain maybe?, catheter, and stent... all or some of these. I was a tiny bit unclear afterwards. We are told he can not return to daycare and things until all the tubes are out and honestly I feel most comfortable with that anyway. He also has reactive airway disease and we don't need him exposed to all the yucky germs at daycare. He has been sick A LOT and every fever he gets he gets before symptoms arise so he has been cathed a lot to check for infection poor bubs its awful all that he has gone through in his short little life.

Has anyone had a child go through all of this? would you mind answering questions and sharing your story with me? We are worried sick and I am a mess. We just want our little guy to be okay forever.
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