Pre and post op hypospadias advice?

[mumwithbumandtum]

Hi all,
My 13 month old son has his first hypospadias repair due on 11th May (10 days from now) and whilst I'm excited to be finally facing it, I'm very worried about the process and the outcome. I'm also 7 months pregnant with DC2. I've found some great posts about this in the past but from years ago - was wondering if anyone had been through surgery more recently than 2008? DS1 has severe form, which means the urethral opening is under his willy (which has chordee) and above his scrotum. He also had hormone tests about a month ago which we were told would increase his willy size... (which would aid surgery) but I've not noticed anything, which makes me wonder whether he responds to hormones at all....and what's going to happen at puberty?? Help. V stressed. Any tips very welcome. Thanks in advance, xx

Hi

Mine underwent repair in March. His was relatively minor in comparison but I can completely relate to the stress levels. Cannot comment on the severity of your sons condition but our son was in and out next day. Nil by mouth for quite a few hours before the op - its hard keeping a 20 month old occupied without the distraction of water, breadsticks etc so I recommend lots of unusual toys, stickers etc

The most difficult thing for us was having a toddler with a catheter. They strap it to their leg, but still it was difficult. I recommend buying some girls tights and cutting a hole in the ankle to allow the bag to be emptied.

Now its over it all seems so long ago, but was extremely stressed before.

Message me back if you have more questions, but as I said our son had a very minor case.

ds1 has his op in 2007 so longer ago than you requested but it sounds like your son is similar to how mine was. His opening was also under his willy & quite a long way back. My ds didn't have a catheter with a bag as he had his op before he was potty trained. He had to wear 2 nappies with the catheter tube feeding through the first one so only the outer one needed changing if he was only wet. This technique is supposed to help reduce the risk of infection. ds1 didn't have any hormone tests so I can't comment on that aspect but as far as puberty goes everything should be totally normal. Just to warn you I found the moment when the anaesthetic kicked in really upsetting as I was holding ds1s hand which suddenly went all limp & lifeless. ds1 would suddenly scream in pain due to spasms caused by the catheter touching the sides of his bladder which was horrible. Mummy cuddles were the only thing that helped when that happened. Good luck & keep focussing on how much better you're making his future for him by him having the op.

Hi again and thanks both for your comments. Claire, if you have time to tell me how successful your son's op was, that would be really helpful, as it does seem there are few boys born (mercifully) with the severe form. DS won't have the need for tights I don't think as he's also not potty trained yet, and we've been told about the double nappy system. I also heard that terry nappies are more comfortable so I'm investing in some of those. It's keeping him occupied after when he can't crawl which is also a concern - stickers / books / toys - bubbles / I'm going to be packing his entire collection. On a woe is me note, I found out last week that I'll be sleeping beside him on a 'chair-bed' (31 weeks pregnant) in a ward with up to 6 other children and parents. Nice. For 3 nights. Quite honestly I can't wait for this to be over, although he needs a second op at 18 months...Claire, is this the same as you son?

Thanks in advance!

Hi
We had a phone call this morning telling us that DS (13months) is going to be having his HS op on 24th May. I am stressing about it as is seems so long ago that we saw the surgeon and I just thought we would get an opportunity to talk to someone again rather than just a phone call out of the blue a year later at 7.30am telling us when to be at the hospital!!!
I am nervous about him having a general anaesthetic but am keen for him to have the op but DP is not keen. He has the condition him self, was not operated on and doesnt think he has had any real probs as a result. He is worried about something going wrong and affecting the function even though the surgeon told us that couldnt happen. My sister is a nurse and has seen cases in adults that havent been repaired and are now causing terrible probs. I dont want that for my little boy and would rather he have it now whilst he wont remember.Now I am stressing even more as I feel that if something did go wrong then DP would blame me as I am agreeing to him having it.

I will be thinking of you tomorrow mumwithbumandtum. Let us know how it goes.

Hi all. What a rollercoaster of a fortnight. God. So, DS was due his op on Tues last week (11th May), but on Sunday 9th he developed a high fever. I dosed him up with Calpol, but by the pre-op meeting on Monday, his fever hit 40 degrees C and the op was postponed. Anaesthetic + virus = pneumonia or other nasty complication. So, he was then off the list and before he can get onto another waiting list we have to inform the surgical team what the cause of the fever is. By Friday his condition hadn't improved - temperatures fluctuating from 40 degrees C down to 37 with Calpol but shooting up again. SO, I took him to GP who referred him to A&E where he did urine test. Test came out positive for UTI. Trimethroprim prescribed, which immediately caused diahorrhea, total loss of appetite (since Sunday last week he's only eaten bananas and breadsticks), and then a horrid rash. By Sunday his mood swings and behaviour was so bad / challenging that we questioned continuing the Trimethroprim...took him to GP this morning who agreed he's allergic to Trim....but hasn't prescribed an alternative. So, where we stand now, is: an untreated possible UTI, a very ill baby and no new date for HS OP. TBH, at this point I think going through the op which is a basic repair, even for severe cases like his, is FAR less stressful than when your baby gets a disease / virus and no flipping doctor can help wtih getting him better. DS has lost so much weight, has been behaving so out of character and is so miserable. I was so gutted when his op was postponed, but now all I want is my little boy back, his op back in the diary (although I'm now 32 weeks pregnant and so we're running out of time) and everything to be fixed. Is that too much to ask.

GOOD LUCK for 24th, I actually think you're pretty lucky to have that date and know that on the 25th your little boy is going to be recovering and on his way to a great start. Just keep him away from sick children / public transport!

Let me know how it goes xxx

Hi mumwithbum. What a horrendous time you have been having. Poor little man, really hope he is feeling better soon. It does put my worries in perspective.

My son sounds like he has a minor case compared to yours. My dilema is whether he should really be having the surgery? Am I putting him through this when chances are he could live ok with his condition. DP thinks the op is unneccesary and is worried that something might go wrong. This is putting alot of stress on me as I want him to have it but I know there are risks with any surgery. Does anyone know what the risks are? I am getting myself really worked up about it all, just wish it was all over.

Lippy - did you ever consider not having the op done?

Just realised that DS has his MMR tomorrow!! So I guess if he has a reaction to that then it could affect his op on Monday!!!

Lucia22 - you're between a rock and a hard place that's for sure. To be honest, I've now read so many horrendous websites which I should have avoided, where men with HS write in saying how psychologically damaged they are because they have always been 'different' with their untreated HS, that they've been shy with women (although clearly, this doesn't apply to all men, given your husband's happy experience) that I would probably go for surgery myself.

I was saying to my DH the other day that with severe HS there's no option for not having the op, so there's no debate about it which is a good thing as we can't go back and forth about it in the same way people like you do. If your son has been recommended for surgery then I'd see that as an opportunity to make him as similar to other boys as possible. With severe HS, the risks are greater with not doign surgery, so it's a no brainer, but you'd need to ask your surgeon about risks with minor / moderate HS. If it's a cosmetic thing and your DH doesn't want your son circumsised, then I think that's silly (sorry, opinionated), because your son surely would prefer to be circumsised as are tonnes of people, than have HS? Argh, it's a toughie, but you need to have your DH onside or you're going to feel too much pressure to proceed. The decision has to be joint, but get all the research you can done first.
Best of luck with it, I don't think I've helped. But I do think you're lucky (albeit risky with this MMR business!) to have the opportunity to get it sorted in a very short space of time. And then it's OVER!
xxx

I think that my DP main worry is that something could go wrong during the op and he could end up worse off, loss of sensation, function of something like that. Its one of the main fears i have got too, that and the who general anaesthetic thing. I spoke to a nurse on the ward he will be on and she said that they do loads of these and she has never come across problems but it something I need to bring up with the surgeon when we see them before op. She says that as long as he has no reaction to the MMR then there shouldnt be a problem. So far he hasnt had any, no temp or anthing.
I am dreading it but will be so glad when it is all over. I know we all feel the same whatever situation we are in our little ones are so precious.

mumwithbumandtum- Hope your little one is on the mend.
LUCIA22- So difficult to know what to do for the best isn't it.

I'm in a dilemma too regarding my 8 month old's query hypospadias . His penis has always looked a bit unusual- the glans is uncovered as the foreskin is fused on the underside and seems a bit 'baggy' , the wee hole is a longer slit than normal extending almost to the edge of the glans, and where the penis joins the rest of the body isn't quite right either, but hard to describe. The first consultant ( abdominal) we were referred to diagnosed him with mild hypospadias, said he would definitely need an op and referred him on to a urologist. We read up on the condition, and made up our minds to accept the operation, as we believe it to be best for our son. However, the urologist said he has mega meatus (large wee hole) and a hooded prepuce ( foreskin) but didn't class this as hypospadias. He says he doesn't need an op unless we wish him to have it for cosmetic reasons. That consultation really threw us as it wasn't what we expected. I still think it would be best to have an op to normalise the look of his penis as much as possible for psychological reasons if nothing else, but my DH is happy to leave it alone now. Really don't know what to do for the best for my little one now.

Lucia22 - GOOD LUCK TODAY!
I'm thinking of you and hope the op, if you've decided to go for it, has gone well and your little one recovers quickly.

My DS1 has completely recovered from his UTI, but before we can have an alternative op date, we have to go for kidney function tests etc to check he's not had any scarring from the UTI. I'm now 32 weeks pregnant, so time has basically run out to have the op before DC2 arrives, which is a great shame.

Lou - it all sounds quite conflicting - can you get a third opinion? Wouldn't it be nice if doctors didn't contradict each other? Could you get cosmetic surgery done for the meatus and hooded prepuce? Not that he will need it for the meatus I doubt, but maybe for the foreskin - may be easier to have a comfortable erection?? Boys and their bits, honestly. We worry about it when we meet our future husbands (that they will be perfect) and we worry about it when we have out sons!

Hope to hear how you're both getting on,
xx

Hi Mumwithbum.
Well DS had his op yesterday and all went well. It was a bit of a nightmare keeping him occupied before hand when he was getting bored and hungry. He just wanted to walk up and down the corridors into the playroom and back to the ward constantly. Although he had quite a mild case he was in surgery for nearly 2 hours which was longer than I was expecting and caused me much anxiety. He came out full of beans though and not the grouchy poorly boy i was expecting. He was so brave and good through it all, including having the gas, and i am so proud of him. I was allowed to go in with him and only left once he was asleep. I went down to recovery once he was awake and came back up to the ward with him.
We staying in hospital last night and came home today. He has a clear dressing which is like a sheath over his whole penis with the stent out of the end and feeding through a hole in one nappy into a second on top. It is a bit fiddly to deal with but have managed to do it single handed a couple of times. He is on antibiotics, an anti spasm drug and calpol. He had been racing around for most of the day but ran out of steam at 6 tonight and just stopped so i put him to bed and he is now sleeping soundly.
We have to go back in a week to have the stent and the dressing removed. The hardest bit is keeping the poo away from the dressing!!!
I am so glad that it is all over and in a week hopefully he will be back to normal.
Let me know if you have any questions about it. I am thinking of you and hope you get the all clear soon and your DS is able to have the op. Keep us posted with what is happening. The info on this thread was invalueable to me as it was all the info I had and really helped.

Lucia22 - CONGRATULATIONS! Whooppeee, it's all over! :-) I bet you are delighted, although I know you've got this week to get through and the dressing removed. Your boy sounds like a real trouper, so well done him. I knew I'd be green with envy that yours is over and I am, but in a happy way :-) I know it's going to be nerve wracking but I really can't wait to get on the HS operation ladder and start correcting my poor DS's funny looking todger. Keep me posted about his recovery and I'll let you know when we get a date...sigh...

Well Ds is still doing really well. He is charging around like normal but does run out of steam towards the end of the day and falls gratefully into bed. Still going with the calpol as I am too nervous to cut it down yet incase he is in pain, maybe try to a little tomorrow. The double nappies are a bit of a pain but not too bad. The worse bit is that if poo gets under the dressing then we have to go all the way back to the hospital to have it redone so paranoid about that. He had a horrible nappy within about an hour of us arriving home and I did ring the hospital in a panic but then went back and gave it another inspection and it was ok.He seems ok but it looks like it must be painful so dont like to touch it more than we have to.
DP has the kids tomorrow on his own whilst I go back to work so will see how he gets on doing the nappies on his own!!!!
Sometimes its a two man job keeping his hands out of the way.

Let me know how you DS gets on with his kidney tests. What does that entail? It is a shame he wont get the op done before your baby is born. If he needs to stay overnight in hospital will your DH be able to stay with him if you need to stay with the new baby? My DD was not happy about me going away for the night but was v good in the end and understood quite well what was going on considering she is only 3. I am definatley glad that DS had the op whilst he is too young to remember it. I think the whole thing would have been much more difficult if he had been older, more stressed about it and more difficult to keep him amused with all the waiting around. Hope you get a date soon.

Hi Lucia 22, just thought I'd write to tell you that DS1 had his operation last week and we're having the dressing removed tomorrow. I'm slightly dreading that as well as looking forward to it, because I know it;s going to look dreadful, and he has to go back under general anaesthetic to get it removed, but equally I can tell the dressing and stents (he's got a superpubic catheter as well) are bothering him. The worst bit for us is getting him to take all the medication...he now screaches when he sees the syringes. I also had another baby boy, 3 weeks ago (GREAT TIMING!) who hasn't got the same condition thankfully, so DS1 must have been a fluke of bad luck. (Rather than genetic cause). Just wondering how your DS1 is getting on now and how the dressing removal went? Do you have to go through any more surgeries? Has his willy reovered 100%? Does it look normal?

Hi, My son is due his Hypospadias operation on the 27th of June, this is the 3rd date we have, as the hospital had to cancel the first 2. My husband and I are booked to go on holiday on the 4th of July. I am thinking we need to cancel, as my sister who is a qualified nurse is due to mind my son, but I dont think I would be able to leave him so soon after his op. Any advice would be gratefully appreciated. thanks

My son had the second operation 3 weeks ago (he is 2yo now) and it looks like it was not successful.. Again! It's devastating! It was very hard to go through the whole process again for the second time. But now I feel I don't know what to do. It looks like we will need another operation in the future (Cant even think about it). Shall we search for more experienced surgeons and how to find them? Just can't think the third one might not be successful again. Did anyone here go through a number of operations? What would be their advice?