has anyone's dc had a patent arterial duct closed?

[MamaChris]

ds (17mo, outwardly heathly) is booked to have a patent arterial duct closed at Great Ormond St. We were told by our local hospital that we would get an appt with the GOSH surgeon where we could talk about any concerns. Today the surgeon's secretary phoned to say that the operation should happen in the next 4 weeks, but that we won't have any advance appt with the surgeon or any other doc.

I'm left with lots of questions (mostly practical about what will happen on the day, but also some about potential complications) and no one to ask.

Has anyone else's dc had a duct like this closed (by keyhole surgery - catheter inserted in the groin)? can you tell me what happened on the day? eg, how long did your dc take to recover from the anaesthetic, were they in pain afterwards, were they upset, etc? we will need to travel back from London about 2 hours, possibly by train; would your dc have coped with that or should we try and find somewhere to stay overnight?

many thanks - trying to envisage and plan for the day, but have few facts to hang my imaginings on.

mamachris I have looked after lots of littlies having this done
they come round from the anesthetic pretty quickly and some are upset others not.They will be given pain killers when they are asleep but you should be able to manage with calpol afterwards but they can give you something stronger to take home
can you travel by car? that would probably be better than the train
any other questions let me know

My dd hasn't had a PDA closed by catheter, but she has had a diagnostic cardiac cath.

One thing to add is that do prepare to be able to stay overnight at the hospital if you have to. My dd didnt get a pulse back in her foot (a sign there is a clot in the blood vessel they put the cath in) and they had to take her back to HDU (High Dependancy Unit) and were about to administer a drug to dissolve the clot when they finally found a pulse in her foot.

My dd was only 10 months old when she had her cath and I don't remember her being upset when she came tound. But she was 17 months when she had her main opand she was a bit distressed after she came round (don't know if that was also to do with the 24hr sedation afterwards) and she was also very very thirsty.

It might be a bit of a strain travelling back on the train afterwards. Even if your ds is fine you will probably be feeling rather fragile.

If you could travel by car that would be better. Or does the hospital have a RonaldMcdonald house (parent accomodation) or similar? You could ask them if they though they might have a room available.

andiem thanks for the reply. the advantage of train is that he's used to travelling that way and he gets antsy in a car seat. but I guess he might be a bit drowsy/sore and then the car seat will be better.

practical questions - do you think one/all of us be with him up until the anaesthetic? he can get quite upset without someone familiar.

do you think we will with him when he wakes up? (again, I worry about him waking up in unfamiliar surroundings)

what about when he gets home - will there be a wound to be kept clean/dressed/away from probing fingers/wee? will a nappy rub?

mc yes one of you will be able to stay with him until he is asleep and they will call you to recovery as soon as he is awake
he will have a very small wound in his groin which shouldn't cause too many problems
a nappy will be fine as the wound is right in the groin

thanks Wallace, very useful. we will prepare for a thirsty boy and, more importantly, an extra night in London. that lack of pulse must have been scary, but also good to be aware of in case it happens to ds. hope your dd is well now?

I think they have a "patient hotel" - we will have to ask if we're eligible (the website says to ask your ward).

I must warn you how awful it is watching your baby being put under and handing them over. Really heart-wrenching.

Do you know about how long the op will be? What are you planning to do while he is having it done? IME the worst thing to do is just hang around and wait.

I agree with wallace about the hanging around try to go and get some food and fresh air whilst he is having the op and then you will be ready for the after bit

yes, trying not to think about that

1.5 hours we were told. have no idea what we'll do. don't want to be far away in case we're needed, won't be able to concentrate on anything else... someone on MN before suggested getting ds a toy that needs putting together, and do the putting together while waiting. but it'd have to be something that'd fit in our small car...

My dd is fit and healthy now - we were lucky that she only had a VSD (hole between two chambers) which is one of the easiest to fix.

I'm still thinking over your train/car question. I can't decide whether train would be better because he is used to it, or car because he would hopefully sleep...

Good luck and do let us know how it goes

yes good luck mc will be thinking of you all

thanks both. will post again when it's all over

any more info/suggestions in the meantime welcome!

WHile dd had her big op we went to ASDA (not too far away) and aswell as groceries we bought dd a cuddly toy

DD went to Yorkhill in Glasgow which is very near the transport museum. A nurse told us that lots of parents go their when their children are in surgery and the museum staff a very used to lots of blank-faced/worried looking people!

mc post any questions you have as you think of them and I'm sure someone will be able to answer them the collctive wisdom of mn is huge!