Bladder Augmentation

[MABS]

That's it really, has anyone any experience of their child having one ? :-(

sorry madb I don't know anyone, have you tried SKITUK.
how are things? sorry I didn't make it on Saturday.

just coming back from hosp in London so only just had major surgery confirmed, no research done yet. you were missed on Sat hun x

sorry to hear that, I wish I knew someone who had been through this that could help you.

Hi Mabs,
my ds is not having bladder augmentation, but he does had bladder issues (PUV) and we are waiting for the hospital to confirm surgery. we can't decide what will be best for him, CIC was a no go, so that leave us with a semi permenant supra pubic or Mitrofanoff. i hope everything go well for you and yours.

thanks Kitty, do you go to St Thomas Hosp at all?

Sd has done cic for 3 years now, does it well 5 times per day, but is still very wet in between, that is why they are trying augmentation, very big op tho

You?re very welcome MABS

Yep, I go to the Evelina at St Thomas Hospital. ds would have none of cic, he wouldn?t let anyone touch him for about two weeks after, all I would get is 'you?re hurting me' even when I was giving him a kiss. All he does is leek even if I manage to get him to double void. I?ve been waiting about 6 months now to discuss the next step and get it started.

I think it's very frustrating for them to be wet all the time ds gets to the point where he just refuses to change and then we have to do the you will get changed bit which makes me want to scream some days.

Augmentation is a big op but they would not do it if they didn?t think it was the way to go. I?m not sure of the details of augmentation but I would think it was all internal, so no tubes and less infections in the long term. I know it all seems very scary and stressful to see them sick or suffering but we find the strength we need from somewhere and so do they. When I visit the hospital it amazes me that these sick kids are some of the most determined people i know.

hw true kitty, how old is he/ ds started cic when he was 6, hated first 2 weeks, now does it 5 times a day. We can double or triple void and he too leaks, so hard for them isn't it? Are you under Dr Wright/Mrs Patil and Nurse Liz? they are such marvellous people x

ds is 4, well almost 5. we tried cic befor he was 4. he double voids most of the time now, but still needs lots of encouragement.it's not much help tho he still gets infection every month.

we have Mrs Patil/Dr Reed and Nurse Joan down stairs.we have seen Liz once or twice as well. upstairs for his Kidneys we have Dr Waller and Nurse Prue. i agree they are all marvellous. but part of me is never sure how to take Mrs Patil although i am in no doubt that she is a great surgen.

totally agree re Mrs Patil! she can be very cold i feel, spent a few hours with her last week, she is so softly spoken i can sometimes barely hear her Dr Wright is great re E's probs,she has a lovely manner

well, it's happening :( week after next is ds major surgery. 10-12 hours undere a GA, 2 weeks in hospital then 6 week recovery. I am distraught :(

thinking of you MABS, please email me your address so I can send him a card,
was lovely to see you at the weekend(hope you are feeling better)

thanks sweetie , will do (actually i am worse, now on diazepam :( )

I have been thinking of you and all this this week.Will be in touch if you fancy a chat.I hope it all works out for him xxx

Hi Mabs, hope the surgery goes well, thinking of you and your family. i'm sure your ds will be fine, all the st thomas lot seem to be very strong and resilient children, or stubborn and mouthy depending on how my ds is behaving at the time.

sorry to hear that MABS, we are facing a similar length op here soon too, (different problem, same condition!).

I'm sorry you feel so distraught, is it the thought of the length and painfulness of the op and recovery time or something else. I know you were thinking of moving abroad, is that still happening? It must all add to the stress.

Take care of yourself, is there anyone at the Evalina you can talk to in a counselling capacity, I have heard (through my son's paediatrician) that they do that, but have no experience of it myself.

thanks all, very sweet to read your kind word. Am stressed about the op but diazepam is for 2 broken ribs, whiplash and a cracked sternum from a car crash 2 weeks ago! Moved abraod on hold til surgery over :(

Oh dear, car crash sounds nasty. Not surprised the move abroad is on hold. We were contemplating a move abroad too but decided against it in the end - am pleased now, the job just wasn't good enough for all the hassle iyswim!

Good luck with it all.

DD4 had mitrofanoff at age 6. It is also a biggy (also had a load of other major stuff done at the same time). Its a lot of work for you, but kids do recover very well and I am sure the results will be worth the trouble.

Hope it goes well, anyway.

thanks Positiveattitude, i know how big that op is :( how does he find it? If this doesn'thelp ds, the mitrofanoff will be a year later i understand.

She's now 13 and is absolutely fine with it. She/we didnt have any choice....long story, but basically adopted from Russia where she was born with bladder extrophy and left at orphanage. They had done a very basic operation at 3 months (after waiting 3 months for her to die) to connect her urethra directly into her bowel, meaning she was constantly doubly incontinent and absolutely no chance of ever being not so, unless she had a mitroffanoff. This time was a nightmare as she started school in nappies and would come out of school with everything dripping from her after just a few hours - no matter how many time I spoke with the teachers!! Could literally need changing a few times every hour of the day and night.

Op when she was 6. Never looked back. She was fully recovered from that side of the operation within 6 weeks. She has only been hospitalised three times since then with infections, and her kidneys are now functioning really well.

Now self catheterises 3 hourly and is fine. The majority of her school friends dont know there is anything different about her. She has only told a few. She needs to drink gallons of water each day to stave off the wee infections, especially as she has really damaged kidneys from her first 3 years of life having constant infections.

Sometimes she can be a madam and decide not to catheterise and to push boundaries, like any teenager with a medical problem, but on the whole she is really healthy and we look at the positives.... she has NEVER been able to "wet" herself since the op (physically impossible) and we can never have the "Oh I need the toilet" at an inconvenient time, cos we have 3 hours warning and if she is a bit late at doing it, no harm done!
Warning to anyone who has this done though!! ALWAYS take a spare catheter out with you, even if you think you are only going to be gone an hour. I did this, went in car thinking we would be only about an hour, car broke down and nearly 5 hours later I had to go into a pub and ask for a straw and be a bit inventive at the side of the road!!

Hope that helps.

really helps, thanks so much, poor liitle thing. Ds has cerebral palsy mildy and a neuropathic bladder. Has been self cathing for 4 years every 3 hours but is still soaked in between so in nappies at nearly 10years old. the bladder augment should mean (60% chance) that he is dry in between caths and can come out of nappies. Thankfully, no kidney damage as yet.

aarrrggghh - op is on Wed :(

op went ok, 11 hours :( he recovering well x

Glad to hear it's over, that must be a relief. Hope recovery is swift and as painfree as possible (for both of you!).

Glad to hear op went well, and he's recovering well.