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Children's health

Pyeloplasty

5 replies

Fostclare7 · 30/07/2018 19:45

So my 6 month old girl is going for pyeloplasty next tuesday, and just looking for some reassurance really.
Since birth we have has many ultrasounds scans and a MAG3 which showed left hydronephrosis and deterioration of renal pelvis- however shes not needed antibiotics, no uti's, and generally well in herself, think this makes me feel anxious about the situation as shes so well.
Concerns over the GA and scar. Also for people who have been through this... how do you keep yourself from going crazy until they finish the surgery (ive been told it could last 2- 3 hours)

Thank you for reading

OP posts:
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katek82 · 05/08/2018 21:18

Hello, my son had the same op at 12 weeks back in May so completely know how you are feeling at the moment.

Hard I know, but try not to worry. The op has a great success rate and I've noticed a big, positive change in my son since he had his. I've jotted down a few things that I thought might be helpful for you before Tuesday.

During the op: Go and get something to eat! We headed to a cafe across the road from the hospital and left our mobile with the team in case they needed to contact us. You'll be busy once your daughter comes out of surgery so it's got to get out of the hospital and take your mind off things, even just for an hour.

GA: My son's operation was about four hours from start to finish (his hydronephrosis is in his left kidney, no UTIs before or after surgery, but on daily antibiotics) and he coped really with with the GA. The first day/evening was a bit tough as the GA wore off, but the medical team were constantly monitoring him and had him on a regular dose of morphine- he had his op on a Friday afternoon and they stopped morphine by 9am Saturday.

Scar- My son has a little neat scar a couple of CMs-wide on his side. It healed super quickly - advantage of having the op so young I think in that recovery time is much quicker.

Bigger nappies/clothes etc - we bought in own nappies a size bigger as son had a catheter for first couple of days, and a stent too. The hospital was really warm so he lived in short-sleeved vest/rompers a size bigger than normal.

Toys- we brought in a couple of rattles and fabric books to try and distract him, and used those Milton wipes to keep them clean!

Feeding- my son is exclusively FF so I brought in a couple of bottles, travel cold water steriliser and some pre-mixed formula to store in the fridge, but when I arrived the staff had already set up a steriliser with bottles, dummies, and milk (they had SMA) which I used instead. There was also a hospital grade pump in case I wanted to express, and they encouraged breastfeeding too. Mum next to me was able to BF straight after her daughter was brought to the ward after a similar op.

Coming home- We were discharged late on a Sunday night after a member of the surgical team checked him and tied off his stent coming out of the op site - they tied a knot in it, coiled it round and put a clear dressing off it and the stent was removed in a outpatient appt a week after surgery. They weighed his nappies before letting us go home to check his urine output (!) and we were given a week-long course of antibiotics too. The only thing I wish I had done was listen more attentively/jot down notes on any poss signs of infection as I then worried that I was missing something when I got home. The staff were brilliant at explaining things if I was unsure about anything, so ask away if you are unsure too.

Our son had his op at another London hospital, but I found these guides from Great Ormond Street and Evelina Hospital super helpful:
www.gosh.nhs.uk/medical-information/procedures-and-treatments/pyeloplasty

www.evelinalondon.nhs.uk/resources/patient-information/pyeloplasty-going-home.pdf

Sorry for the huge post, but didn't want you to go unanswered. We've had one post op ultrasound so far and an outpatient's appointment next week, so keeping our fingers crossed that the op has done the trick. The only thing I would say is that the difference in my son's mood post op was remarkable- he seemed much calmer, more alert and happier. My FIL described it as a lightbulb being switched on. He's steadily put on weight, smiles all the time, feeds a lot better than before (we thought he had colic/reflux, but seeing the difference in his mood now not so sure!) and he was back rolling once his stent came out- and he was crawling at five months!
I shall keep my fingers crossed that all goes well for you on Tuesday- babies are amazingly resilient and I'm now grateful that he had the op at a young age so he won't be able to remember it. If you have any other questions, just post on this thread and I'll try and help if I can! Lots and lots of luck xx

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Fclare7 · 05/08/2018 22:14

Hi! Oh thank you so much i really thought it was going to go unanswered!

So glad to hear the positive change you have seen for your son! How amazing!! And crawling at five months - wow!

We are hoping to get the same stent i think, termed the 'blue stent' only stays in for a week - so hadnt really thought about bigger clothes so will definitely be buying some tomorrow and getting them ready.
My daughter is FF also, and the hospital have said they provide a steriliser for us but the set up you had sounds amazing!

Hadn't thought about maybe a catheter either so will get a pack of bigger nappies just in case (they will get used eventually if not needed whilst in hospital).

I've just been starting to pack the bag and got a variety of clothes as wasnt sure about how the stent would fit within them all, so now atleast i can remove some haha its so hot atm so shes living in vests or rompers!

Got some toys to take good shout on wipes ill get some.

My latest concern - because i keep inventing new ones 🤣- is how to keep my 2 year old from pulling or being a bit too friendly around the stent site until its removed!! Which sounds like it should be easy- but i have my doubts!

Thank you so much for your reply, for the reassurance and advice - will definitely take your advice on eating whilst shes under, particularly due to the fasting shes gotta do - literally needs feeding every 3 hours or she becomes a demon, couldnt possibly eat around her particularly since we have started weaning her and she wants everything we have!!!

Fingers crossed for you too for your consultation heres hoping its all fixed!!!
Thanks x

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katek82 · 06/08/2018 06:55

That's good that the hospital will have steriliser waiting for you- I called the ward to check beforehand and they weren't sure, so I brought everything but the kitchen sink in in the end!

And the nil by mouth was a bit of a pain (especially as the baby seems to hate water!) But they soon have them on IV fluids so they stay hydrated.

We had similar fears with our (now) three-year-old hugging his brother a bit too tightly, but we told him he had a sore tummy and that he would like kisses on the head instead and they sort of did work!

We had a blue stent, it's a really thin tube and when they tie it off before they go home they coil it so it sits quite close to the skin, and the dressing keeps it in place (they gave us a spare dressing in case it came loose).
My son's stayed put until the stent was taken out by a nurse (really quick and he didn't need any pain relief). I think when we held him on our knee we had the stent side/wound side facing out so we didn't knock him when feeding. I can't remember the exact timing but I know we couldn't give him a bath for a day or two.

Hope all goes well tomorrow, sounds like you are in food hands- let me know how it goes! Xx

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Fclare7 · 13/08/2018 20:05

Hi, so it all went really well, stent is now out aswel, and she is just amazing!!!
Bigger nappies and clothes where a godsend thank you so much for saying about them. Scar is tidy and neat! So two months then ultrasound scan and hopefully its all worked!
Hope your sons outpatients appointment showed good signs!
Thank you again for all your advice, and sharing your experience!!!

Xx

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katek82 · 14/08/2018 12:43

Brilliant news! So glad it all went well for you. Hope your follow up appointments go well too, we've got our three-month appt with surgeon day after tomorrow so keeping my fingers crossed! Xx

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