Update! And any experience with Kidney issues?

mommy0411

Thank you all for your thoughts and prayers. Everything has stayed stable enough that i got to come home today on strict bed rest! And my parents are amazing! They are basically going to live with us 4 days a week to take care of my DS since I can't do anything. 

Unfortunately yesterday during an ultrasound we got more bad news. The baby has a very dilated left kidney due to a blockage in the ureter. He is going to require surgery when he is 6-8 months old, possibly sooner. We are meeting Monday with a urologist to go over his scans and get a game plan. Has anyone else been through this? The perinatologist said the surgery is minor but its still terrifying.

I feel like I just can't catch a break recently. My DS was only diagnosed 3 weeks ago, then the preterm labor and now the kidney issues. I started to cry during the ultrasound when the doctor told me and I feel so overwhelmed. I know we will get through all this, it's just so hard and scary!

On the bright side, my older DS's receptive language is starting to click and he followed a point for the first time ever this week!!!  

preggersINschool25

It seems like everything likes to happen all at once. We started our DX journey right before I was in a bad car accident that seriously injured my foot and required surgery. That's the same time his feeding issues got out of control. We have been going to countless doctor appointments and therapy sessions for him and me ever since. I know its hard, and my situation lead to a severe depression that I finally had treated.

I'm glad you have some help. I hope your LOs surgery goes well. Try to not worry too much. Doctors are so good at fixing things these days.

realisticdreams

mommy0411:

Thank you all for your thoughts and prayers. Everything has stayed stable enough that i got to come home today on strict bed rest! And my parents are amazing! They are basically going to live with us 4 days a week to take care of my DS since I can't do anything. 

Unfortunately yesterday during an ultrasound we got more bad news. The baby has a very dilated left kidney due to a blockage in the ureter. He is going to require surgery when he is 6-8 months old, possibly sooner. We are meeting Monday with a urologist to go over his scans and get a game plan. Has anyone else been through this? The perinatologist said the surgery is minor but its still terrifying.

I feel like I just can't catch a break recently. My DS was only diagnosed 3 weeks ago, then the preterm labor and now the kidney issues. I started to cry during the ultrasound when the doctor told me and I feel so overwhelmed. I know we will get through all this, it's just so hard and scary!

On the bright side, my older DS's receptive language is starting to click and he followed a point for the first time ever this week!!!  

I know quite a bit about uro/kidney issues.  The surgery they are talking about is probably to re-implant the ureter.  I would go ahead and start looking at pediatric urologist in the area, because they can have a lengthy wait, and you ultimately they would be the ones doing the surgery.  He may need to be on a prophylactic antibiotic to prevent infections.  And, he should also have some kidney scans done at birth and probably every few months or so until his surgery.  

Their is also a procedure called deflux, that doesn't always work for a full blockage but it is more outpatient, and way less invasive, so you could start some research on that as well.  

You are just going to want to make sure he isnt' getting UTI's from reflux, or hydronephrosis on the kidney or scar tissue so it's for sure not something I would wait until he's 6 months old to look into getting 'fixed.'  

Kidney/uro issues are not fun, and the longer they go untreated the more damage is done.

mommy0411

realisticdreams:

mommy0411:

Thank you all for your thoughts and prayers. Everything has stayed stable enough that i got to come home today on strict bed rest! And my parents are amazing! They are basically going to live with us 4 days a week to take care of my DS since I can't do anything. 

Unfortunately yesterday during an ultrasound we got more bad news. The baby has a very dilated left kidney due to a blockage in the ureter. He is going to require surgery when he is 6-8 months old, possibly sooner. We are meeting Monday with a urologist to go over his scans and get a game plan. Has anyone else been through this? The perinatologist said the surgery is minor but its still terrifying.

I feel like I just can't catch a break recently. My DS was only diagnosed 3 weeks ago, then the preterm labor and now the kidney issues. I started to cry during the ultrasound when the doctor told me and I feel so overwhelmed. I know we will get through all this, it's just so hard and scary!

On the bright side, my older DS's receptive language is starting to click and he followed a point for the first time ever this week!!!  

I know quite a bit about uro/kidney issues.  The surgery they are talking about is probably to re-implant the ureter.  I would go ahead and start looking at pediatric urologist in the area, because they can have a lengthy wait, and you ultimately they would be the ones doing the surgery.  He may need to be on a prophylactic antibiotic to prevent infections.  And, he should also have some kidney scans done at birth and probably every few months or so until his surgery.  

Their is also a procedure called deflux, that doesn't always work for a full blockage but it is more outpatient, and way less invasive, so you could start some research on that as well.  

You are just going to want to make sure he isnt' getting UTI's from reflux, or hydronephrosis on the kidney or scar tissue so it's for sure not something I would wait until he's 6 months old to look into getting 'fixed.'  

Kidney/uro issues are not fun, and the longer they go untreated the more damage is done.

Thank you so much for the information! We are meeting with the pediatric urologist on Monday. I was able to get a very quick appointment because both my OB and my perinatologist referred us. They also warned us about him needing the antibiotics. My doctor told me that if this hadn't been caught in utero the baby would have likely lost the kidney. Hopefully with already consulting with the urologist now we will know quickly after birth if he needs surgery sooner to prevent permanent damage. 

BunnyCookie

i'm so sorry you are dealing with all of this. will be sending lots of thoughts and prayers your way! glad to hear that your son's receptive language is going well.

smerka

My son has a similar kidney problem.  We didn't find out until he was four months old because he was showing no symptoms.  The ped thought his abdomen felt funny and we had an ultrasound.  His left kidney was swollen.  He then had a VCUG to determine if he had reflux.  He scored a five (the worst).  He had multiple ureters and they were in the wrong spots.  

We then found out that the left kidney only had about 15% function.  We had to decide if we wanted to remove the kidney, fix it, or leave it (and watch for kidney infections).  We decided to try to fix it with the thought being the 15% function could keep him off dialysis if the good kidney ever went bad.  

He had the surgery to fix the kidney at about 21 months.  He had to be big enough for them to use the robot to do the surgery.   It was about a four hour surgery.  When he woke up he was pretty out of sorts and cranky because of the catheter and the IV.  I spent the night with him at the hospital on "23 hour observation" so we were never officially admitted.  The next day they took out the IV and the catheter and he almost immediately was much happier.  We went home a couple hours later.

once we got home, he was back to his normal self.  I was totally amazed.  He had an incision that was about half as long as he was wide  and he was still climbing around like normal.  He was on some medicine for the pain and peed blood for a couple of days.

They put some stents in the ureters to keep them open and they kind of irritated the whole system.  So he would hold his urine until he couldn't do it anymore and it would all come gushing out all at once.  And it was a lot of pee.  That resulted in a couple of incidents while we were out and about.   

 After six weeks, they took out the stents.  He had to be put under again, but the procedure took about five minutes.  After another VCUG several weeks later, it was determined that the reflux was gone and he was taken off the antibiotics he had been on for over a year.  

Now the system is still all stretched out and will probably never work right.  But it shouldn't cause him any problems and he should live a perfectly normal life.  His right kidney is fine.  If the left kidney ever causes a problem, we'll probably just have it removed.

I know it's scary, but take it one step at a time and try not to stress about it.  I know that's easier said than done.   PM me if you want any more details. GL!

gimmietimmies

15 years of kidney experience, unfortunately. RD has mentioned what I would have. DS has had problems with his ureters pre and post transplant, and they've had to redo his a few times because of the blockage and swelling. Waiting till lo is 6 mo is a good thing, given how tiny newbies are. Just keep watch on output (ie wet diapers), and for UTIs.

Sorry it's short, it's a bit chaotic in here today.