please tell me your experience if your baby has had an operation

[grannycracksopenabottleofwine]

my ds (7 months tomorrow) will be having an operation on his right kidney at the evelina children's hospital next month. he is still bf on demand and i'm not looking forward to trying to stop him for 12 hours before the op. has anyone experience of the evelina hospital and/or operations on their baby?

Hallo all,

Just had a look at Declans old medical notes on his op...he had a 'left pyeloplasty' under a Mr Wilcox at Guys. He had a nephrostomy tube inserted as a stent into the kidney and it was later knotted...whatever that means

Basically he was born with kidney reflux in both kidneys and in the left there was a slight blockage but he was fine to be on the anti-bios whilst they monitored the situation. His was called hydronephrosis too.However looking in his red book, there seems to be lots of other words for it too??? S.V.D...and PUJ blockage..

He had trips to Guernsey for the dye testing on many occasions and normal scans at our local hospital. Suddenly in Oct 98 his left got a lot worse ans almost completely blocked so they operated within 2 weeks at Guy's. The reflux cleared by itself....9 out of 10 cases do apparenlty..(callums and Keenan did) they snipped the 'bad bit' of tubing away and and then re-attatched the 2 ends. He had to stay on anti-biocs for a while after until he saw the renal team again away at Guys again..and was then given the all clear.

In Sept this year he had a kidney infection in his left kidney....so was on anti-bioctics and thats when my G.P told me he should take vitamin c everyday to help flush things through and keep the stent working well. He should also drink more fluid than the average child. If he is to get another kidney infection within the next 12 mths they will scan him...so fingers crossed he wont need it.

The rest of the family were scanned after keenan developed it as it does run in families. Thats when we found that Callum had had it when he was young and it was never spotted so he has scarred kidneys which may mean probs later in life.

I think the docs are happy to monitor the kidneys hoping that it wil clear by itself..but if things start getting worse they would prefer to operate. They didn't give me a choice of having it done or not..they just said it needed doing straight away.

I can't remember how long they were away for, i know Darren took nice walks after a few days to Tower bridge and some of the markets. His 'wound' scared the life out of me when he got back....i felt so sorry for him, i wasn't prepared for such a big scar..Declan is very proud of it now though..lol I think the younger the child-the quicker they get over it more.

gosh i am bleating on a bit now...lol

any questions just ask and i will try my best to answer......

Emma.x

Yes, declan was on dickens ward too.

Remeber lots of loose clothing for wearing after the op. maybe some joggers that are a bit big so the wasteband wont be rubbing on the wound. It is situated right on the edge..going a bit round the back and the front..does that make sense..?..lol

Granny-not sure what CAT is? are you allowed to put email addies on here??

PUJ just stands for a Pelvic Uretero Junction blockage (kidney pelvis not pelvis pelvis IYSWIM). We've had all the scans and there's no reflux, just a blockage. But we just don't know whether it's serious enough to operate now, or whether we can wait till he's a year old. Apparently there's a bigger risk of Anaesthetic problems under a year old which is very worrying...

Personally I'm of the opinion we wait a few months for some monitoring just so he's a little bit older, but still do it before he's concious of what's happening.

yeah you're right, sounds like better to wait if poss?? Have they said if it has changed at all since he was born?..if no change may well clear by itself.....

let us know how he gets on.x

My DS had a GA at Evelina's last year and we were in for 3 nights. The nurses were fantastic and very kind - encouraging me to go and get food/coffee etc and saying they would ring me if DS woke up/cried or whatever. I had a pull down bed by DS's bedside which was really narrow but surprisingly comfortable, but it sounds like you'll have a separate room which is great.
For the operation, they let me go down with him to the room where they give him the GA and stay with him till he was asleep. The only big problem that I encountered was that DS's operation took a lot longer than was expected but no one could tell me what was going on - there is NO contact between the operating theatre and the ward, only between the recovery room and the ward (and he was still in theatre). I spent about an hour petrified that he had died and no one had come to tell me . As someone else said, they have a lot of experience of GAs with infants so try not to worry, he will be fine!
Re questions, maybe arrange to have a telephone conference with the consultant and fire all your questions at him? We also rang the ward once we got home (we had to be readmitted because DS had a small complication) and they were always really helpful

thanks howdoo for the really interesting points. you've probably saved us from a lot of worry when ds is in the op theatre.

twinmummy you can put an email add on here but i know a lot of people don't like to do that. there is a facility - contact a mumsnetter - i've set mine to accept messages. i haven't sent one yet but i'll set that up too so i can do it (it's £5 i think)

pamina - the evelina looks like an interesting building. the inside is apparently designed with the help of children. pleased to hear good things about the staff