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?

I think it's pretty standard to have no food for 12 hours before a general anaesthetic, but OK to have water till the morning of the op. I don't know if milk would be considered "water" being liquid, or food. Good luck with the op. They'll have lots of experience of GAs in such young children, check with the hospital that they know he's still being breastfed. I hope the op goes well.

Granny - my dd has had several operations although not at the Evelina. The following is copied from a site I use for children with heart problems. Obviously the ward info will be different but pretty much the same IYSWIM. Hope it helps with the practicalities.

Accomodation... they have a Ronald MacDonald House..... 10mins away by bus on the Guys site. The bus runs 7am-10pm Mon-Fri and is free for Mac House resisdents and hospital staff.

It runs every 15mins before 7pm and after that every half hour. You get on at the St Thomas' car park and off about 2mins down the road from Mac House.... i sounds like a fuss, my hubby did it nealy every day and i did it 3 times, it was fine. At weekends you have to use the buses, £1.50 its a bit more awkward but ok once you know what you're doing. What i would do is befriend some-one on the ward and ask to travel back with them that night... but i'm a whimp and don't like working things like that out myself, but my hubby and mum did!

There is nurses accomodation you can pre-book for £30 for a single and £45 for a double room (i think), there are rooms on the St Thomas' and Guys site. We didn't use it though. There is no cancellation fee, not even when cancelled at the last minute.

If your child is in PICU (second floor, forest) you can have a room on the first floor if one is available. We were lucky to get one and they are basic but clean.. a bed, wardrobe and shower room. There is also a lounge but we didn't use it.

Food

hmmmm... i don't think whats at the Evelina can be classed as food There is a 'surf shack' on the 3rd floor which is nice but only does sandwiches, cakes, hot/cold drinks... there is similar on the ground floor. I'm sure though if i remember its only open Mon-Fri 9-5!

St Thomas'... there is 'Toms 2', its crap (in my opinion!) same sandwiches, plus nasty pizza's and potatoe wedges. If your lucky enough to get one of the 3 baked potatoes they cook daily they're ok!

There is also the 'Shepherds Resturant' open between 12-2pm daily, my mum and Chris said thats quite nice, but i never left Grace to go.

Outside.... If you go out of the St Thomas' building, cross the road and go straight ahead then there is a row of a few resturants and takeways.

If you leave the hospital via the St Thomas entrance and walk to the river turning right along the Thames path you will reach loads of good places to eat.

• Queen Elizabeth Hall: the first place you come to is the new development of restaurants and shops at the Queen Elizabeth hall. There is a Giraffe cafe, a Wagamama and a Strada which are all good for chain places. There is also a book shop.

• National Film Theatre: The cafe and bar in the NFT are brilliant. The cafe serves fab jacket spuds with loads of interesting fillings. In the summer you can sit outside and watch the world go by....I did alot of thinking and talking in there after my antenatal scans at Guys.

• Gabriels Wharf: A little further down the Thames (but still only ten minutes from Evelina there are a couple of lovely places in Gabriels Wharf. There is an OK Italian which has ace views over the Thames. Also, the Gourmet Pizza Co. does delicious pizzas.

Shops

Go out of St Thomas and turn left keep walking over the bridge, look over the road and you'll see a very very small Tesco metro, it sells quite a few handy items and food. There is also a boots there.

There is a bigger Sainsburys, my mum always went for us (bless her!) but she said its about a 5-10min walk from the Mac House.

Parking

hardly any, also its within the London cengestion charge zone. Get the tube in. If you get off at Wetminster Station, its a few mins in the cab, costing £3-5.

On the Ward (Camel- cardiac Ward)

One parent can sleep by the bedside. There is a nice parents room with tea/coffee/milk all provided, fridge, telly, a fab brown leather sofa and chairs!

Down the other end of the ward (Neuro end) there is a parents Kitchen (you don't actually get shown it!).... with all normal appliances to use.. VERY handy, we cooked Grace's food at Mac House, froze it and re-heated in the kitchen. We also bought ready meals for ourself, not ideal but better than that bloody Toms 2! There is an oven, fridge/freezer etc if you get chance to cook.

As fas as the emotional side is concerned, it's pretty tough seeing your child have a general anaesthetic. They will let you stay with him until he's asleep though and there'll be a nurse to support you afterwards.

As he's bf they may let you feed him after the 12 hour cut off, they are usually allowed water for a little longer so may allow a feed.

How long are you expected to be in hospital for?

I have no experience from the parents point of view and ops...but I know that my mum found it very difficult...but back then it was in those days where the parents couldn't go near a child in Hospital anyway, etc....she tended to stay at home on those days and just call in if everything went o.k. even when we started using another Hospital which was nearer and where they had better and more childfriendly policies!
Just wanted to mention that I am pretty sure that you can breastfeed until put under, or atl east until 2 hours before the op, as that is roughly how long it takes for BM to be digested...i.e. there is no need to go through a punishing nil by mouth phase...however, you might wanna see if Tiktok is about in the Breast and bottlefeeding section of mn, I am sure she would be able to tell you for sure, where you stand
Wishing you and your lil one all the best!

OH, can I just say, that Breatmilk counts as clear fluid, i.e. the same policy that applies to water will apply to breastmilk!

ds had an op at 7m too (hernia). he was bf and they said it was ok to feed him up to (i think) six hours before,
anyway ring them to ask, this must be fairly common. is it day surgery?

hopefully they'll schedule him first as we were - the starving really was the worst bit since it was a minor op. also there was no breast pump so i was pretty uncomfortable too, sodding maternity ward wouldn't let me use theirs despite having agreed it in advance.

thanks everyone for your help, which is much appreciated

i expect to be staying in the hospital room with my ds for about 4 days. my dh will be staying at the ronald macdonald house. we don't live near london so have to fly there first and back, and because we live far away we don't get to see the consultant (dr mushtak) except when he's come to see us (twice so far), so it's not so easy to get answers to any questions. although thinking about it, i could phone or email the hospital. i think i'm a bit of a coward when it comes to thinking about the operation but i know i have to get things sorted in my mind. my ds has had very swollen kidneys, especially the right one, which was firts discovered at the 20 week scan. he has to have an antibiotic long term, but we are hoping that this operation will solve the problem. he will have the tube coming from the kidney cut at a slant to aid drainage. when we travel back home he will have a shunt removed. i think it's a fairly common operation and the consultant seems very good, but i'll be pleased when it's all over.

I imagine it's quite hard in those circumstances granny. The info I copied below was by a mum who is island based and has to fly in. I know just being in a hospital not local to home feels very isolating.

I've always found writing out my questions makes me feel more in control when seeing consultants. And if I come up with more quesstions aferwards I e-mail the secretary.

Hope it all goes well for you and your ds.

thanks, saggar. sounds like you have quite a lot of experience of this sort of thing. my ds seems really well - we only know of the problem because of scans and the mag3 test, but are told it's quite severe.

any one had experience of guys and st thomas' evelina children's hospital?

Hi, I don't know about the particular hospitals you mention I am afraid, but hope I can offer something of help. My 2nd daughter was at the Royal Brompton in Chelsea, first operated on the day she was born. I was very determined to breastfeed, and they had a special room and facilities to use breastpumps. With regular pumping I produced all that she was able to take and more, but I know the stress affected some of the other mums. Are you intending to continue breastfeeding? If so, (and when your child is recovering I am sure it will give that added comfort), it might be a good idea to get yourself a good breastpump. Also explain to your child what is going to happen, even if you think it might be hard to grasp. I'm sure the doctors thought I was mad explaining to a new baby, but my own mother talked to my younger brother who had a kidney operation when months old, explaining to him what was going to happen. The doctors were amazed at how calm he was, and how readily he accepted every procedure, painful or not. My daughter has had to have quite a few operations and procedures, but positively loves going to hospital! I think it is because being the middle of 3 children it is one of the few occasions she has total attention from both parents, and no siblings around! Also, even when unconscious your child may be able to hear your voice and be reassured. In my own and wider family I have known babies in intensive care to have heart rate calmed and oxygen saturation readings improved when the parents talk calmly to the apparently unconscious child. Hope that it all goes well, I am sure we will all be gunning for you on mumsnet.

Where I've worked anaesthetic guidelines consider breastmilk to be ok up to 3-4 hours before the op, certainly nothing like 12 hours.

Hope your lo recovers swiftly.

thank for the info.

hope your dd is well,lillochum

Hiya, my son has that exact kidney operation at Guys, just before he turned 2. We found it at the 20 week scan and he was on Trimethoprim long term.
He had kidney reflux and narrowing of the ureter that got worse and worse so he had the shunt thingy done. They took the bad 'pipe' bit away and re-joined.
My other boys were born with it too but luckily they all cleared by itself. But Callum (12) we didn't know about so he wasn't on the anti-biotics so his kidneys are now scarred

Declan is 9 now and very healthy. He takes vitamin c everyday..it is supposed to help the shunt in some way. He is very proud of his scar ..haha

It was Declans dad that was with him for the op...we live in Jersey and i had just had our 4th baby so couldn't travel with them...he was a daddy's boy at that time anyway. The op went very smoothly..the only thing is that he went hyper with the pre-med.....can go that way esp with children apparently...any questions don;t hesitate to ask.xx

Emma.xx

great to see your message, twinmummy. i'm in jersey too!!! if you have the time i'd love to meet you. thanks for the info and i'll ask if i think of any more questions

oh wow..!....gosh it is a small world!..lol

Would love to meet up.....a lot of mine are ill at the mo with this hideous flu virus thing thats sweeping the island for the second time round. but defo when all recovered...

Just seen your profile...you have lots of kiddies too! My eldest daughter is 14...what school is your son at?

When do you go away for the little ones op?

Don't know if this has been said, butI think breastmilk is classed as a "clear fluid" and can be given up to 4 hours beforehand. HTH xx

thanks grannycracksopenabottleofwine my daughter is hale and hearty! She is now 7yrs and will need a few more catheter operations in the future, and at some point another open-heart job to give her a new pulmonary valve. Heart surgery developments are speedy though, so maybe we will be lucky and the surgery won't be so major when we get there. Incidentally, my brother, who had one kidney removed as a baby (hydro nephrosis), and had a subsequent operation on the remaining kidney, is 6 foot 3, and ran the Bath Half Marathon today (fantastic muscles!) Hope your family comes through just as well.

Hello lillochum, aother 'heart' mum here. Dd's surgeon is at the Brompton now - the wonderful Mr Sethia

granny - loads of good info here for you. Let us know how you get on.

Hi Saggarmakersbottomknocker good to hear from another heart-mum. The Brompton is great isn't it. My daughter's surgeon is Mr Shore, and consultant is Dr Rigby. She was diagnosed with Fallots Tetralogy when I was 24 weeks pregnant, and had her open-heart surgery repair just before she was 2 yrs. How about you?

My baby had a hernia op at 16 months. He had a breastfeed about 5 hours before the op (couldn't stop him in the middle of the night). They said not to worry as it was such a small amount. He was fine.

Good luck with the op.

twinmummy - your children look very sweet, and hope you're all better soon. my 14 yr old ds has a scholarship to vic. the older ones went to haute vallee and hautlieu. what about yours? is that a le rocquier uniform? we live in st clements so maybe quite close.

thanks again and will let everyone know how we get on.

Hi again. No we live by Peoples park. Our catchment is Haute Vallee but as the children are at St Luke my eldest 2 wanted to go to Le Rocquier. Shannon got into Haulieu this year but has decided to stay at Le Rocquier as she has been fast tracking for her GCSE's and gets on so well with all her teachers that she didnt want to move.

Still got one off school today and the twins are still full of cold, tiredness ear-aches ...not a good night sleep last night that for sure....just had to pop to town too..its Luke and Jakes birthday on Wednesday and they want nintendo DS lites......but of course there is none in the whole island again....typical!...they said to try tmrw and they may have had some in with todays deliveries.....

keep in touch.
Emma.x

TwinmummyX2
our DS has the PUJ blockage and we don't know whether he needs the op yet. It, like yours, was identified at 20 weeks, and he's now 5 months. Assuming he needs an op we want to wait until he's a year old or more rather than now. Where you given the option? One of his kidneys is pretty much blocked I think (still draining but slowly) - although the kidney is fine. The other kidney and ureter are both 100%. i just need some info to talk to the consultant about...

thanks

twinmummy - happy birthday to your boys tomorrow. perhaps we could meet up at a playground or similar sometime. you can cat me if you have the cat facility.

kidneyprobs - what does "puj" stand for? my ds had hydronephrosis diagnosed at the 20 week scan. within his first few months of birth he's had a scan with a catheter in the bladder to check the drainage (forget what it's called)and a test using nuclear medicine to check the flow of urine and show the location of the problem as well as other scans. we've been advised to have the op as soon as possible, and it will be next month, tp prevent scarring to the kidneys. he also takes trimethoprim every day. we did consider the possibility of not having the op at all and spoke to our consultant about this. he says there is someone in the usa who does the no op route on his patients but they have to go through quarterly mag (which are not nice for a baby) tests and continue with antibiotics. we decided it's best to get it done before it gets worse and at his age he'll know nothing about it. hth