My son has a suprapubic catheter - does anyone have any tips?

[Ducksarsehead]

My son is three and since birth has has been diagnosed with grade 5 hydrophonosis and reflux. In October last year he began having more frequent urine infections and then began withholding urine. Until march he was in and out of hospital for antibiotics and spent periods from one week to one month with an in dwelling urethral catheter, but kept being discharged as one of those things and it won't happen again. In April he was readmitted with over a litre of urine withheld.
Then we finally got to see a urology consultant who put in the suprapubic cath. He has had an MRI to rule out spina bifida, and numerous ultrasound scans - but still no diagnosis other than "we will wait and see for a few years"
I am finding this approach hard to accept, things seem easier when you know the reasons why.
He is currently on clamp and release for three hourly periods during the day, and free flows at night.
The insertion site is constantly red and weepy and is painful for him. He has had many occurances of infection at the site because it doesn't seem to be healing. Also at three I can't take the hospitals advice of make him take it easy.
I feel quite alone in dealing with this, I've not met another child with a permanent cath bag, and the hospital and community nurse seem clueless. Everytime he has so much as a sniffle we get sent to a&e because the gp doesn't know how to deal with his issues - which again seems crazy.
After all this waffle I suppose I am just wanting to connect with someone who understands what is going on and might be able to give me some ideas on the best way to manage it instead of a shrug and advice that is definitely not geared towards an active three year old
Thanks!

[Nursed123]

Hi Ducks
I'm a practice nurse, used to be a district nurse and see lots of S/P catheters. Unfortunately it is a general rule that most people do get quite sore weepy sites as the body doesn't like the tube being there and it obviously irritates the skin.
Has he ever had a little foam dressing put on? With a cut in it so it sits nicely around the tube .. Helps to stop it rubbing and anchors it so it doesn't move so much.
If the site is over granulating, so if there's a raised red area of tissue we often use silver nitrate to cauterise it which also helps stop it rubbing and stops the site tissue growing too much which can be uncomfortable
This might not have helped at all and you've probably already been told it by the community nurses but thought I'd try!

[brightwell]

Ask your community nurses to try a statlock, a small securement device that sticks, a bit like a plaster, close to the insertion site & secures the catheter, which may reduce some of the movement & irritation.

[Ducksarsehead]

Thanks for all the tips, our Internet was off for a few days so I'm late checking back in.

He has had the silver nitrate a few times, some applications work better than others. Last week's attempt has made no difference but I will ask now about the foam pads. His tube is looped I think I place it above the belly button, tape and then tape again on his groin and thigh.

I am going to suggest to the community nurses that they ask for more training with the hospital. Now I know that's an option and not just being cheeky, it's hard when they are asking me to take the lead in his care and I am Internet trained lol.

I will also ask if he can be admitted straight to the ward with any problems. I've tried phoning ahead and saying we are on our way and can a surgeon be called, as now a&e Dr's won't look at him either. But unless the surgeon whose taken him on as a "pet" case is working we tend to get left in the waiting room for hours before admission.

Thank you all so much for replying. I hate to ask as I know every case is different but what are the reasons behind needing a supra public catheter long term. Everything I have read is due to spinal abnormalities or dexterity problems which he doesn't have

[Ducksarsehead]

Thank for the info on the statlock. Just looked it up and it seems ideal. Are the zofft wipes the type required to remove it?

We have finally gotten a prescription for meditate which I am hoping will be less harsh on his skin than the plaster type tape. He is also very afraid of changing the tape so I am hoping this will be a better option.

[Daisydingleberry]

Hello there. My son is 12 and had a supra pubic catheter put in place last March. He has always struggled with weeing and like your son he has had MRI's which show a normal spine. I too am struggling to get information on why an otherwise healthy child has this problem. My sons probs are due to his muscles being unable to work so he can't wee in the normal way. He feels isolated and I feel helpless not knowing where to turn to - hence here! How are things going for you now?

[Ducksarsehead]

I'm sorry that your son is going through this.
It is very isolating and hard to find information about especially for children. My son has had a very difficult few months with repeated infections and grit and stones in the catheter which seem to be painful but it's hard to know exactly as he's only three.
We have found getting support from the hospital difficult and made it this far mostly by trial and error. Flushing the catheter regularly seems to make it flow better. .
We still have no answers as to why but are going for another apt soon where we hope to find out something.

[Lealea83]

Hi all so my son is 8 yrs old and well 9 on Sunday. He is having his suprapubic fitted nxt week he’s done intermittent catherising. It hasn’t worked they won’t do indwelling they are fitting a suprapubic for few years and the try him on intermittent again and if he can’t master it in a few years he will have a piece of bowel removed and joined to his kidneys to make like a stoma. He is very frightened he has grade 5&3 kidney reflux it was detected in the womb and he has tried numerous meds. He has had a few other ops. I’m planning on when he is going bk to school afterwards having a talk with the class like a show and tell to make him not feel isolated by the kids in his school and class. I am wandering as I work full time and have a teenager at home. How long were kids in hospital with op and how long before go bk to achool as normal??

[Madmike35]

Hi as a iDC user and born with SB and many other option including artificial spincter which is placed at base of bladder neck and inflation device placed in the sack this will stop incontinence issue's for those here who don't like the idea of indwelling catheters and pads to deal with it

[Madmike35]

To Lealea83 don't let your son do the operation to called mace and mitrofanoff

Experience with many people i know this operation doesn't work well for males
Something with the male anatomy one male i know had it fail and collapse 5 times in 8 months it's a very invasive operation and very big operation please look at all options before going this path