Hi,
We saw hugo’s surgeon yesterday and they have decided that they are going to do more surgery in 6 weeks time time. this surgery is for his hyperspadius (his willy and water works)

He told us it can either be a simple op, or more complicated depending on what they find when they start the surgery.

I was wondering if any one else’s little boy has had this done and what it entailed for them, and the end results?

Thanks
Kim.

I’m very interested to hear too.  We have to wait till the 17th of November to have our follow up with the surgeon to see if surgery is the only option left.  Devin’s is more the skin stuck together causing problems to let the wee out but have been told it could be worst than we think.

well ill let you know how hugh gets on after he has had his done. our surgeon also cant really tell us exactly what needs to be done as he said its just depends on what he finds when they look there. could be a simple case of separating the skin at the bottom of his willy, which creates the curve and put new skin in that place to lengthen the underside of his willy. or it could be the wee tube (uretha) is short and thats why there is the curve and if this is the case, then they need to seperate and then also do reconsturctive surgery to rebuild the tube to make it longer. also if this is the case, there are possibilities of fistula’s forming on and off the uretha, and if it is the bigger surgery they put a special bandage on with a drip? or something, and this has to stay on a week and be surgically removed a week later. so were really hoping its just the simple case of separating the skin to undo the curve and thats it, so fingers crossed.

there dosent seem to be that tofs that also have this problem?

well devins been having major issues over the last 2wks.and after two checks at the drs this wk poor thing is off to see the surgeon in the morning and maybe having an op too.im definatly not prepared for this really need to have more warning and to know what is going to happen im feeling like im in a dream.well guess i better go and pack the bags incase they do the op tomorrow too

Hi Jo,
did Devin end up having his op back in september?

Hugo has had his hyperspadius surgery, he had it back in November. They straightened the curve of his willy, by cutting the underside of his willy to allow it to straighten, and half curcumcised him at the same time, so the skin they took off, they used that as a skin graft to repair the underside of the willy where they cut. They didnt have to reconstruct any of the uretha itself as there was enough there to allow it to straighten fully, but they did make his wee hole more centralised. He was in for just over 2 and half hours, and when he came out he had a special bandage over the whole of his willy. the best way i can describe it is, u know if u break your arm and u have a plaster cast put on, well the bandage reminded me off a plaster cast over his willy. he also had a catheter put in so he could wee directly out of that. we spent just the 1 night in hospital and went home with the bandage and catheter still in and came back 4 days later where they put him back under with a general aneathetic, and they just removed the bandage and catheter and checked the skin graft was healing well. (if the graft hadnt taken then they would have fully circumcised him then and used the new bit of skin from there to redo the skin graft) Luckily his skin graft had taken and he was only in there 10 minutes. He was red raw and really swollen but when we got back to the ward he was crawling on the floor playin with all the toys. He healed very quickly its 2 months on from his op now and everything is absolutely fine down there. It was a relief to finally get that surgery out of the way really, as we knew he needed it doin from birth, so hopefully we can have a few good years of being surgery free.

kim. xx

Hi Kim

Devin ended up getting called in the last week of November.

He had a full circumsision.  He was in for half a hour.  When he came out they didnt have any bandages on him just a nappy.

Unfortantly for us we got a different surgeon on the day for another town who didnt see the need for the surgery and didnt want to do it which created a huge argueement but he did it as i said i would be calling the health board if he didnt, turned out he did it to everyone on the day that was having a op on their kid.

Sadly once we were told we could go home cause all was well 2hrs after the op we left and went home.  We got 5 minutes for the house, 2 1/2hr drive and received a call from our surgeon, she had read the file and consulted with a plastic surgeon and it was decided that Devin was needed to return to hospital urgently for 24hr supervision.

Turned out the surgeon who did the op had given him the wrong typo of local anisetic(sp) into the penis head.  The type they gave him had the chances of causing blood clots in the head and making it so he cant wee.

They had him sceduled to have surgery the next morning if the circulation didnt come back through the night, lucky for us it did at midnight so no need for a second op.

We had no bleeding afterwards just swelling for a few weeks.  Best of all being the beginning of summer i managed to leave him sitting on the couch to heal and had the potty next to him and he was fully toilet trained come the end of the week in the daytime.so glade to see the nappies dropping off, big saving for my pocket.

Devin has his first follow up appointment with the surgeons either in February or March so we will see then how well they think things have gone.  I do wonder if it was done right as it looks very odd as though they took too much skin off.

aww bless him, that must have been very worrying.

and brilliant - toilet trained quickly out of it too

you’ll have to let me know how u get on in ure check up app, were seeing the surgeon for the 1st time since his op on 1st March.
xx

Hi Kim

We saw the surgeons a couple of days ago.  I was shocked to hear that we need to keep an eye on his penis as its not healed properly yet.  Big shock for me as I thought it had healed and just looked funny.  They will revisit again and see if its healing better.

You will have to let us know how Hugo goes on the 1st of March, hope he has better news.

Jo

aww poor little man. Good thing they will be keeping an eye on it then, hope it heals soon for him.

yes i will keep you posted on what hugo’s surgeon says in March.

xx

Hi Jo,
Just updating you on how we got on with Hugo’s surgeon. He says hes very happy that he has definately straightened the curve out, but where he made Hugo’s wee hole more central its healed so well, he’s not actually sure if wee can come out of it, and so is now unsure where he wee’s from. He passes urine fine and always has a nice wet nappy so we know he can wee, we just havnt seen where the wee comes out of yet since the surgery. So were going back in 6 months time and by then he wants to know where he wees from an if its the wrong hole still, then it will mean further surgery to make sure he wee’s from the tip and not from underneath. (So fingers crossed we wont need that further op)
He also said that he has some excess skin around his willy but if need be he can do something about that when Hugo is much older.

How’s Devin doing?

Hi Kim.

Great to hear the surgeon is happy with things, and that the curve has straightend.  Hope you manage to catch him weeing soon to put your minds at ease as to which hole he wees from and no further ops are needed.
Devin is doing well with his penis all our current props are in his mouth, feels like its never ending lol. We are on a waiting list to see a ENT due to his tonsils being that enlarged for 4mths its restricting what he can eat and to make my day better the surgeon wants to scope but cant til the tonsils are removed, so until next week when the ENT reads the letter from the surgeon we wont know how long we have to wait, hopefully not long.
I am hoping it is all sorted before his birthday which is 8wks away as I have booked him and his friends to go to Pizza Hut for lunch, but I want him to be able to eat his cake and enjoy it too.
Let us know how you go in 6mths time on the recheck, we will have our fingers crossed all goes well for you.
Jo

Thanks Jo, Ill keep you updated on how he gets on.

Poor Devin, hope you get your appointment soon for ENT and can move on with things soon.

xx