Has anyone's baby had a pyeloplasty for dilate dkidney and how was it?

[Wildpoppy]

My 8wo dd needs one in the next few weeks so any advice or reassurance very much wanted. Thank you.

[bakingdemon]

Hi everyone, I found this thread as I am looking for advice ahead of my 1yo's pyeloplasty and this is so much more helpful than the consultant! He was diagnosed with hydronephrosis in utero and has been on trimethoprim since he was born but the dilation hasn't improved so he needs the op. We have been told to pack for 2-3 nights in hospital but nothing about the recovery and I have so many questions. How much pain will he be in? How will his movement be affected (my LO is extremely active and busy)? Will he be able to sleep? What drugs will he be given afterwards? How long until we can do things like go swimming again? I think he is having an internal stent as we have been told we will need to go back 6 weeks later for that to be removed. Any advice would be very gratefully received!

[capricorn1913]

To Melanie519,

Hey, that is a great news. I'm so pleased to hear that your son's dilation has come down and he is doing well. This is just fantastic. I really hope and pray both our sons recover really really quickly and no more medications and just happy healthy childhood. I'm sure the other kidney will be fine too.
Will definitely keep you posted, my son's next scan is at end of April. Hope everything else is well too. Take care and lots of love to the little one. I go back to work in few weeks so enjoying every day my little one. He is walking now and then, can't believe how days go so quick xxxx

[Melanie519]

Hi capricorn1913,

Great to hear that your DS is doing really well!! Must have been a huge relief!! Praise the Lord! Amen! I pray that you guys continue to witness further improvements in all the follow up scans.

As for my son's scan last week, the dilation on his Right Kidney further decreased from 1.4cm to 0.7cm! I couldn't believe what I was seeing and there it was, you could say from the US, the black part which shows the dilated part is like a flabby balloon now. So thankful beyond words! As for the antibiotics, our surgeon wants him to continue until he gets much better and hopefully by next scan he will ask us to stop it. He just wanna play safe and make sure that the kidneys are well protected, coz any sorts of infection is a big no no for him. DS also had urine test last week and it all came back normal, thank God for that too! Our next scan is on June! Actually DS' Left Kidney is also mildly dilated around 0.4cm to 0.8cm depending on how they scan it. So far, our surgeon says that it looks good and still needs to be under observation. The last Mag3 scan showed that there was sufficient amount of the lasix being secreted from his Left Kidney so they didn't say it has an obstruction too. So here's praying for both his Left Kidney and your son's Right Kidney to be stable and no further dilation and hopefully they grow out of the dilation as they grow older! All fingers and toes crossed again!

Do keep in touch babe! And take care and enjoy motherhood!! Time flies too fast and my baby's gonna be a toddler next month! Haha! Keep me updated every now and then!

[capricorn1913]

To Melanie519,

Really sorry for the late reply, we have moved house last week and it has been crazy busy. Hope you and the little one is doing well.

My son is doing really well, thankyou. He had his stent removal end of Jan and then a scan in middle of Feb where his dilation has come down from 2.4cm to 1cm so the surgeon was really happy with the results and we were relieved that he is on the mend. The next scan is in April now so keeping my fingers crossed that everything is still all fine and improving.

How did your son scan go? My son's right kidney is mildly dilated around 0.6 to 0.8 reading but our surgeon doesnt feel he will need surgery on his right kidney he thinks that's ok. Also, my son has been off antibiotics week after his stent removal. I am not sure why your son is and you should definitely check with your doctor. Like you say it's too much for them and may not even work after a while as your son would have build resistance to it. But definitely check with the doctor.

Hope rest is all good and keep in touch. Take care xxx

[Melanie519]

To capricorn1913,

Ahh its been long since i came back here. I hope you and your son is doing great our there! How was the stent removal procedure? When is your next scan due after the the stent removal or you had already went for another scan after the removal of his stent? If so, how did it fare? I hope his dilation is getting smaller(all my fingers and toes crossed for your lo!). And yea, even i realised that after his surgery, his nappy was much fuller than pre op. I had actually asked my doc earlier, but she said it shouldn't be the case, coz they'd be producing the same amount of urine and its just the matter of how much time their kidneys take to excrete the urine. So yea, I had the same feeling as you, well i do hope it plays a good part at draining out the urine faster so as not to get collected in their kidneys.
My lo's next scan is on the 2nd of March after the long gap of 3 months interval since his last scan on early Dec. And as usual, I'm really worried. Even though his last scan the right kidney dilation went down from 3cm to 1.4cm which shows quite a significant improvement, but you may call me greedy or whatever, I really hope with all my heart that it improves further and shows no more worsening. On the other hand, I'm also quite worried about his left kidney which was always on the 0.5cm-0.8cm mark and doc had always kept an eye on it. I really hope it resolves on its own without any surgical intervention. Pls pray for my lo! By the way, my lo is still on antibiotics since his op, is yours too? Not sure how much longer does doc intends to put him on it. I really don't like the idea of giving him so much medication at such a young age, pains me so much, hope after this visit, he might think of stopping? Fingers crossed again!

To Kerry,
How's your DS doing now? I hope he is well and recovered great from his pyeloplasty and his stent removal. And how was his subsequent follow up scans?

Hope 2017 and all the oncoming years bestow our LOs and loved ones with great health!

Take care mommas! xoxo!

[Aceberry]

Hi Kerry

I feel for you too as I've recently been there with my son. Ours was not diagnosed antenatally and unfortunately he had an acute incident at 8 weeks - the blockage was so severe that he began to fit. We then found out he only had one kidney and that his ureter was kinky and closing up on itself. He's had 3 operations - first a nephrostomy to drain the kidney of urine, a second op to try a fix with a stent only (this didn't work) and a third successful pyloplasty with a stent. He recovered really well from the pyloplasty and we were home 5 days after. I did notice he was wincing a bit at first but this has stopped. He is 17 weeks now and will have to have the stent replaced in a few weeks too. He is on antibiotics whilst he has the stent which I think is normal. My advice is to make sure you keep a close eye on the number of wet nappies. Apart from my poor antenatal care, we have been very lucky and had fantastic NHS care.

[capricorn1913]

Hi Kerry,

I can imagine this is very difficult time for you and the family. I have been in your shoes so know exactly how difficult it is to hear and comprehend that your little baby needs surgery.

My son who is now 13 months old had his operation when he was 11 months old and is scheduled for his stent removal next week. His left kidney was dilated around 20 to 24mm. He recovered very quickly from the surgery and has been fine since his op. We were home 2nd day. I think it was harder for me than for him as I guess he doesn't know what has happened. I don't think he is any pain now or even prior to surgery, however I have noticed after the operation his nappies are quite full of urine which I think is good thing and it's draining properly.

We live in Leeds and decided to go private as I couldn't get the consultant on the NHS and the slow process, usual stuff. It's good you are able to see someone private.

I was like you and wanting to wait few more months in the hope that it would get better own it's own and then I had to make the decision of him having the surgery. I feel I made the right decision as I think his kidneys have better chance of recovering and not getting any worse. I don't want to scare you but it's very highly likely that your daughter will need the surgery as her dilation is medium to severe and the theory is that usually it gets better own it's own in the first 2 months. I think if you are given the opportunity to book the operation it's better to do it soon when babies are young and much more resilient than us and recover a lot quicker. I was told by my consultant that babies kidneys are fully formed in the first 2 years and hence wanting to do the surgery sooner rather than later. We still won't know for another few months how his dilation has improved but I guess he is on the road to recovery.

I hope this helps you but if you need any other information or have any questions drop me a messsge and I will be happy to reply back.

All the best and take care xxx

[KerryBerry00]

Hello all,

So pleased I've found this thread. My daughter, 6m, was found to have a dilated right kidney in utero which has been regularly monitored since birth. We are being seen privately, luckily, as the NHS have completely dropped the ball from the get go - advised our case was urgent at birth and we should be seen within 2 weeks only to receive an appointment for 2 months time due to annual leave of a single doctor at my local hospital. Then referred to GOSH via the NHS 3 months ago and still no appointment to even begin investigation.

We had our 6m appointment yesterday at the Portland which showed that whilst function is still good the kidney dilation is still fluctuating around the 30mm mark.

We were advised that it is very likely she will require a pyeloplasty now however we can wait 3 more months in the hope of an improvement before we schedule surgery as this will be done within 2 weeks of scheduling.

Thank you for sharing your experiences so far - some brought tears to my eyes, not sure how I will cope with the operation should it be required. I wasn't aware that the operation may not resolve the issue so that is interesting to read.

It is good to find others that are going through the same experience.

I am really curious to see if any of you felt your children showed any symptoms of this issue? Pain etc?

Thanks

Kerry x

[capricorn1913]

To Melanie and Aceberry

Hi both,

I'm really sorry for replying so late, it's been crazy last few weeks.

Happy New Year and let's hope a positive and healthy new year for our little ones

Melanie - my son's scan went well, it was pretty much to check his stent is in right position and that dilation hasn't gone up. His dilation is same as before the surgery. He is scheduled for his stent removal end of January so keeping my fingers crossed for that. Rest he is doing fine, trying to walk these days.How are you and the little one?

Aceberry- not sure about the strains, are you thinking it's bladder spasms? We were told that he may get like cramp type pain and gave us painkillers but he seem to be fine so I haven't given him anything. Have you discussed this with your consultant?

I know sometimes babies strain if they are constipated. I know your baby is still very young, does he move or crawl? Sometimes they say when babies move it helps with the recovery and stent. Hope he is doing ok.

Take care & best wishes xxx

[Aceberry]

Hi both - my son's op went well and we were home for Christmas. He also has a stent. I've noticed he strains sometimes - do you think it is the stent?

[Melanie519]

To capricorn1913

Sorry was coming back to you so late as I've been quite caught up at work. How was your son's first scan after the op? How is he doing along with the stent? I hope all is well at your end. I pray 2017 will be a better year in terms of health for our los and all our dear ones!

Take care

[capricorn1913]

To Aceberry

That's good, he is going through children's hospital, they will look after him. We were in hospital for one night, they said maximum 2 nights. Our consultants is NHS based but we decided to go private as ultrasound scans were done consistently by a radiologist. He has his first scan next week and consultant appointment week after. He has an internal stent which will be removed end of Jan so I think we will know more in terms of improvement and what happens in terms of regular monitoring.

When is your son's operation and didn't they say how long you will be in hospital?

Good luck with everything and keep in touch. If you want to talk please let me know, we are based in Leeds.

Take care xxx

[Aceberry]

Thank you so much for this - it is really comforting to read. We are based in Cardiff, South Wales and he is going to the children's hospital which is fantastic. Hoping we will be home for Christmas. Does your child now have regular monitoring?

[capricorn1913]

To Aceberry,

Hi,

I can understand this is a very difficult time for you and your family, but I'm sure you will get through this and everything will be fine.

I was in total loss when my son had to have operation and was so worried about loads of things. In terms of pyeloplasty procedure, they gave my son general anaesthetic via mask and within seconds he was asleep and operation took about 2 hours. He was little loss when he came out but within hours started to drink milk and playing on bed. Next day he was playing on ward, I think babies cope much better than adults as they don't know what has happened I guess. Scar is not that big too and urine is bloody first few days and back to normal after that. I think it's a very routine procedure.

Where are you based? If you have any specific questions please let me know and I will do my best to answer. Everything will be go fine and stay positive.

Take care and all the best xxx

[Aceberry]

Hi sorry to hijack this thread but my 3 month old DS is having a pyeloplasty on Thursday and I'm a bit of a wreck. He only has one kidney and only found out after a seizure. He currently has a nephrostomy to drain the kidney

[capricorn1913]

To melanie519

hey, I am so pleased to hear that your son's dilation has come down. When I read your message I had tears in my eyes, it is an absolute fantastic news. Finally you can see the improvements and everything we have been put through, babies are fighters. I really hope and wish that everything gets back to normal soon for you too and the march scan goes really well too.

My son has his first scan next week so will let you know how it goes but he is doing well except he has got cold and has suddenly decided to stop drinking milk. anyway.. have a lovely Christmas and new year with the family.

Take care and keep in touch xxxx

[Melanie519]

To capricorn1913,

As for your question about the blood clots, if i dont remember wrongly, i think they only lasted for a couple of days and it cleared off soon after.

[Melanie519]

To capricorn1913,

it's great to hear that your son bounced back so quickly and doing well! I hope he recovers fully and soon shows improvement in all his subsequent scans.

We had an US scan done on the 1st of Dec which is like about 3 months from the date of surgery. Finally the dilation of about 3.1cm from the previous scan on his right kidney came down to about 1.5cm this time! We were so overwhelmed when we saw the results, after having putting in so much time and effort, finally we are witnessing some improvements! Of course, bravo to my son for being the one to fight so bravely all the while! Just couldn't thank God more for this! All fingers and toes crossed for further improvements on his condition. Our surgeon mentioned that if he continues to progress like this significantly, Mag3 scan will probably be ruled out. So we're are once again praying hard that his next scan on 2nd of March, will show more improvements!

Keep praying babe, and dont lose faith, God will guide us through this!

Take care and kp in touch!

[capricorn1913]

To Melanie519,

Just a quick question, how long did the urine was stained and was there any blood cots? Thank you xx

[capricorn1913]

To melanie519,

Hope you all are doing well. The operation went well and he is doing good too, he bounced back much quicker than I imagined. I'm so relieved all went to plan and it's all done now. The next scan is being arranged for middle of December so I will let you know how it goes.

How's your baby boy doing? Have you got a date for mag3?

Thank you for all your support and messages it really helped me get through this. Lots of love and take care xxxx

[Melanie519]

Hi capricorn1913 ,

How are you and your lo?
I really hope that the surgery went well and he is on the road to recovery.

[Melanie519]

Hi capricorn1913 ,

Hugs to you and your lo. I know how you're feeling right now but do stay strong for your lo, he needs you the most.

As for the readings on the US scans, yes the dilation and the measurement will surely be consistently huge as the surgeon told me that some people take about 1-2years to slightly subside, but never expect it to look like a normal kidney. As for the kidney function, they told me normally the kidneys wont improve its function, it normally is stable or becomes worse. My last US report said that the thinning of cortex was noticed so I'm really worried. Our surgeon also told us that lo will need to go through another Mag3 test to rule out any obstruction. He's not so worried about the US readings but he's more concerned about the mag3 result. I really dread the Mag3 test, having to sedate my lo and putting him on IV which they never manage to get through the first try, the last time they only managed it after the 4th time and lo was screaming his lungs off by then. It was really heartbreaking. And the feeling of waiting for the mag3 results after the test is done, that's horrible.

Stay strong dear, I'll pray for your little one's speedy recovery. Leave it to God and he will see him through this.

Take care and keep in touch!

[capricorn1913]

To Melanie519,

Hope you and the little one are doing well.

Good to hear that there is some improvement with your little one, I think we have to believe the surgeon they are the experts.

My son had his scan today and his dilation is same so I think we will have to go for surgery, it's scheduled in two weeks time, I'm really scared but hoping everything will be alright. I will keep you updated after the operation.

Also, it may help you I did ask our radiologist today about how the improvement is measured post-op and he did say that dilation measurement may remain the same after post-op but they look at how well the kidney is performing (clinical observation rather than scan measurement) and the surgery is to reduce the pressure on the kidney, he said think kidney is like a balloon even when it's deflated its floppy so therefore the dilation reading may always remain the same by measurement but kidney will perform better. Hope this helps you.

Take care and lots of hugs xxx

[Melanie519]

TO capricorn1913,

So sorry for the late reply.

My boy's last scan showed some improvement according to the surgeon, however the figure of ultrasound done by the radiologists doesn't say so. The surgeon say the US is variable and it all depends on the radiologist and the angle they take to measure. All in all, he didnt bother about the scary numbers, rather he said from the images, the dilation shows improvement and he seemed to be quite confident and has order another follow up on the 1 of Dec.

Well i do hope that the surgeon is correct and I shouldnt be too worried about the readings on the US report.

How's your lo? Did you go for a scan?

Take care.

[capricorn1913]

To melanie519,

Hope you and your little one is doing well. How did the scan go? Xx