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    Default Hypospadias surgery

    Hello,

    I am a mum of a 2.5 year old boy who had distal hypospadias surgery at 17 months old, developed a fistula in the following few weeks and had a second surgery to repair the fistula at 24 months. The first surgery was through the NSW public system and the second surgery was through NSW private hospital. I learnt a lot through this process and have shared some notes below which might be helpful if you too are in the process of organising hypospadias surgery for your son. Please note: this is just my experience and learning and every child's situation requires your own decision making.
    Dr Jiwane at the Prince of Wales private Hospital in Randwick Sydney performed the second surgery and he was wonderful to deal with and he used the double nappy method with a stitch to hold the catheter in which I prefer (having experienced both the single nappy/ no stitch method during the first surgery and the double nappy/ stitch method during the second surgery).


    BEFORE SURGERY
    Speak to Paediatric urologists specialising in hypospadias not just a paediatric urologist.
    Speak to several hypospadias surgeons to ensure you feel comfortable with the surgeon you've chosen.
    Take photos and write down reasons for having the surgery done so you can later explain to the child why the decision was made and why/ why not circumcised.
    If the child is attending child care think about the timing of taking them out of care before surgery so no colds or any health reasons for the surgery to be cancelled for example 2 weeks before.
    Ask what risks are involved with the surgery and what does the surgeon have in place should any of those risks actualise.
    Ask what type of catheter is going to be used and how to manage the care of your child/ the catheter after surgery

    Public hospital
    Ask if it is a training hospital and ask if anyone other than the surgeon might be involved in the surgery and you can then make a decision going forward if this is/ isn't suitable for you.
    Ask who the anaesthetist is and research them to see if suitable for your needs
    Make sure to always double check future appointments, book them as soon as possible and follow up if you're unsure so that you ensure your appointments are booked ahead of time.
    It's okay to call the public hospital and get updates on how the wait list is progressing.
    Private hospital
    Check if just the surgeon is doing the surgery
    Check with your private health company what costs are/ aren’t covered and excess payments etc
    Before the surgery check if any payments need to be made to surgeon/ anaesthetist before arriving at the hospital on the day of surgery
    Ask who the anaesthetist is and research them to see if suitable for your needs
    Book in any appointments for post surgery care as soon as the surgery date is booked in.
    Check with hospital requirements but some advise no medications prior to surgery

    List of preparations for home
    Please use your own discernment regarding what medication to give to your child. This is what I used but it may not be suitable for everyone.
    Nurofen
    Panadol
    Parachoc – for constipation
    Apricot pouches/ pear / prune puches – or juice also assist so the child avoid getting constipation
    Nappies – normal size and larger size – huggies are good as very absorbent
    Wipes/ poo bags etc
    Soft white parrafin/ Vaseline - once the dressing has come off and to avoid rubbing on the nappy
    Sudocream to avoid nappy rash
    Easy to eat foods that are not too messy as best not to get food all over bub and chance of dressing getting wet/ dirty
    Simple toys/ activities available
    Antibiotic Ointment after dressing removed – surgeon may supply script for this when on ward such as Cefalexin
    Fill up car with petrol
    Prepare meals for the first few days as you will be tired and probably won't want to cook
    Two days before surgery make sure the child hydrated with water/ coconut water. No need to overdo it but just so they're hydrated going into surgery.
    Wash child’s hair as it might be a week or so before wanting to use shampoo or lotions as not to irritate the wound once the dressing comes off/ catheter comes out.
    Notepad and pen to keep a log of medication administered and nappy changes with poo/ wee as you’ll be very tired and best to write down so don’t forget
    Have pillow/ rug etc or what needed for the car ride home so the child is comfortable

    List of preparations for hospital/ hospital bag
    Nappies – normal size and a larger size nappy as the outside nappy (if the double nappy method is preferred by the surgeon)
    Milk, water, easy to eat food on the recovery ward and on the ward Couple of changes of clothes
    Blue book/ immunisation record and medical information etc as per hospital request
    Ipad/ books etc for entertainment
    Comforting toys/ blanket/ dummies – anything that will comfort the child
    Phone charger/ earphones
    Notepad and pen
    Check the closest parking station to the hospital so it’s not a long walk from the ward to the car if carrying child in arms after surgery. You can also use pram but be mindful of seatbelt putting any pressure on the nappy/ wound and sometimes carrying laying flat in arms is the best option so no rubbing on the wound.
    Ask the surgeon/ anaesthetist about the procedure for delivering the child to the surgery/ operating theatre and who will do this (mum/ dad/ guardian etc) as this can be an emotional process.
    Will the doctor come and visit on the ward before the surgery or speak to you on the phone before the day?
    Will the anaesthetist come and visit on the ward before the surgery or will they speak to you on the phone about any concerns prior to the day of surgery?
    Most likely the child will have a mask put close to/ over their face to get them to sleep then anaesthetic administered but again this was just my experience. This can be stressful for the person handing over the child. Ask the surgeon for clear instructions what happens once you enter the surgery theatre with the child.
    Check with the surgeon how long the procedure should take so you’re close by when the child wakes up in recovery.
    Once the child is in surgery, have some food and take a break and a breath.
    Recovery ward – have milk, water (in sippy cups so easy to drink and hold and no spillage as you don’t want the child to spill liquid on themselves or their nappy/ dressing) and easy to eat food such as a smooth pouch. have dummies ready if child uses a dummy. Or the hospital should have for example icypoles available so the child can start fluids.
    Once the recovery unit team is happy with the child’s recovery you will be sent to the ward and monitored.
    Fluid and food intake will be monitored and the nurse will discuss pain relief medication and how to change the nappy easily and comfortably.
    The anaesthetic block wore off between 4-8 hours (ask the anaesthetist these questions before the surgery) and this could be around the time you are to go home in the car so you might want to ask for stronger pain relief to be administered to the child before leaving the hospital as the nurofen and Panadol may not be enough.
    If the first dose of the stronger medication is administered at the hospital you’ll know if there’s a reaction or not.
    If a double nappy method and a stitch used to hold the catheter in place is used the penis is positioned upwards to his belly and the dressing fully covers the penis and testicles so the catheter comes out the top of the dressing and loops over the first nappy and gently drips down into the second larger nappy that is put on the outside of the first nappy. This prevents the urine from loosening the dressing underneath the first nappy (if only a single nappy is used the catheter drips down into the single nappy).
    Some surgeons may suggest only single nappy and no stitch in the catheter – from my experience having had both options used over two surgeries the double nappy and stitch was much more secure for my child and the catheter stayed in for the full 5 days.
    Ask what method each surgeon uses for keeping the catheter in place as they they do have different methods and choose what is best for you.
    Ask for a post care document giving you contact numbers if you have any concerns – whether you have direct access to the surgeon/ their rooms or the hospital emergency
    Take note of when hospital pharmacy closes so can collect prescription in time before leaving hospital. The doctor may prescribe an antibiotic until the catheter comes out along with any stronger pain relief and antibacterial ointment.
    Double check that you have an appointment scheduled, and the time, for the removal of the catheter/ dressing by the surgeon and also for 6 week post operation check up (these appointments should be made when the date of the surgery is scheduled)
    When travelling home be mindful not to put pressure on the wound area.

    I will add more information in the comments section regarding care at home post surgery, pain relief and fistula.

    Hypospadiasmum

  2. #2
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    AT HOME
    Please note this was my experience in the first week after the surgery and may not be suitable for another child's experience.
    Keep the child close so you can monitor for any fevers/ irritations etc and also want to be able to check if catheter not kinked and working properly.
    Gentle activities and lots of rest.
    Sleep close by until the catheter comes out to monitor breathing, pain, movement etc and make sure no issues or blockages with the catheter.
    As soon as the child does a poo clean as soon as possible and be mindful not to get the dressing wet.
    Have the two nappies ready to go so the change is as quick as possible. If two people are available for the nappy change - one person soothe and distract the child and the other change the nappy. Regular changing of nappy – approx. every 2-3 hours to check catheter working and so the nappy doesn’t get too full with wee and gets tight.
    Do not get the dressing wet at any point. Keep clean and dry. No showers or baths for the child until the catheter is removed.
    Don’t remove the dressing yourself as it could tear the wound - check with your surgeon how they want the dressing to be removed. Bladder spasms – if child gets bladder spasms, call Dr and let them know. Lie child down and calm him. Discuss pain relief with your doctor.
    Catheter / dressing removal - check with the surgeon/ anaesthetic and nurse about administering a dose of oxycodone 30 mins before the removal of the dressing.
    If a stitch has been put in place will need to go back to surgeon/ hospital to have it removed/ catheter taken out and dressing removed.
    Some doctors may advise the parents to remove the catheter at home (if no stitch was used) but this was very stressful for me at home trying to get the outer dressing off. After the second surgery (using stitch and double nappy) my son went back to see the surgeon to have the dressing removed and the catheter taken out it was very quick and pain free and I felt much calmer having the doctor remove the dressing and the catheter.
    Bathing once the outer dressing has been removed (don't remove any of the inside dressing that may be stuck to the penis as this could rip the skin - this dressing will come off by itself in the following few days) Bathing can be very painful so gently lower the child into a bath of warm water or stand under a very gentle shower. No soaps etc in the shower/ bath, just clean warm water.
    Gentle pat dry, no rubbing.
    Put soft parrafin/ Vaseline inside the nappy, we used a larger size nappy for a few days once the catheter had been removed for extra room and comfort as there was some swelling, but this will depend on what is best for each child.
    Paraffin/ Vaseline can cause a rash if child gets hot so good to also put some sudocream around bum area to avoid rash.
    We kept my son's penis laying up and flat or straight down and flat against the body when changing the nappy so that the penis didn't move about too much and rub on the nappy gusset.
    Surgeon may suggest ointment to put on penis once the dressing has been removed – antibacterial ointment.
    Throughout recovery dress child in soft harem pants/ comfortable soft pull up pants, especially when using double nappy and there is extra bulk.

    PAIN RELIEF
    Please note this is what worked for my son and may not be suitable for your child.
    Ask your doctor what is best for your child but we realised the nurofen and panadol would not be enough of pain relief for our son. Doctors for both surgeries prescribed oxycodene for the first few days which meant our son was calm. Really important to follow surgeon's instructions about dosage etc
    Panadol and nurofen on rotation for first 3-4 days then started to spread out pending the discomfort of the child as the days pass. Panadol or nurofen before a nappy change so the change is as comfortable as possible
    Oxycodone may cause constipation so might need to give child something such as parachoc to soften the poo. Pear juice/ prune juice can also help.
    Very simple entertainment for the child such as watching tv, reading books.
    No climbing, running, quick movements No swimming/ playing in sandpit until wound had completely healed or as per doctor’s instructions.
    Ask the surgeon about the post operative care and what the child can/ can't do pending their surgery and how long the repair/ recovery should take. Each child is different.

    IF A FISTULA DOES DEVELOP
    I found this experience very stressful when we discovered that my son was urinating out of two holes in the 3-4 weeks after his first surgery. It can be quite confronting but we took a few steps to make sure he was well and then looked at the options to repair the fistula.
    Be mindful of fevers and take to emergency straight away if a fever does develop. We checked for bladder/ kidney infection or blockage.
    My son also had an ultrasound and was monitored to make sure urine was flowing properly.
    Depending on where the fistula is, how big etc there could be stretching of the skin, urine pooling under the skin which may cause pain, discomfort as was the case for my son so we went to the emergency department at the hospital where the surgery was performed so they have all information on file and we could monitor the development of the fistula. It took around 3 months for my son's fistula to establish itself and stop stretching and causing pain.
    Nurofen helped reduce the pain and inflammation.
    Ask your surgeon what their post care is if a fistula develops and if they don't have one ask for extra information or seek advice from another surgeon.
    Seek out a second and third opinion from other hypospadias surgeons about how to move forward to repair the fistula.
    It may take 6 months for the tissue to heal after the surgery and the surgeon might suggest leaving any second surgeries until then pending the child's circumstance etc but if the child is in any continued pain/ discomfort take back to the hospital as often as needed.

    I hope this information may help you as I found it distressing to go through this, but by asking lots of questions and seeking several opinions my son had his fistula repaired at 24 months and everything is looking good. We have a check up 12 months after the surgery.

    Hypospadias mum

  3. #3
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    Quote Originally Posted by hypospadiasmum View Post
    AT HOME
    Please note this was my experience in the first week after the surgery and may not be suitable for another child's experience.
    Keep the child close so you can monitor for any fevers/ irritations etc and also want to be able to check if catheter not kinked and working properly.
    Gentle activities and lots of rest.
    Sleep close by until the catheter comes out to monitor breathing, pain, movement etc and make sure no issues or blockages with the catheter.
    As soon as the child does a poo clean as soon as possible and be mindful not to get the dressing wet.
    Have the two nappies ready to go so the change is as quick as possible. If two people are available for the nappy change - one person soothe and distract the child and the other change the nappy. Regular changing of nappy – approx. every 2-3 hours to check catheter working and so the nappy doesn’t get too full with wee and gets tight.
    Do not get the dressing wet at any point. Keep clean and dry. No showers or baths for the child until the catheter is removed.
    Don’t remove the dressing yourself as it could tear the wound - check with your surgeon how they want the dressing to be removed. Bladder spasms – if child gets bladder spasms, call Dr and let them know. Lie child down and calm him. Discuss pain relief with your doctor.
    Catheter / dressing removal - check with the surgeon/ anaesthetic and nurse about administering a dose of oxycodone 30 mins before the removal of the dressing.
    If a stitch has been put in place will need to go back to surgeon/ hospital to have it removed/ catheter taken out and dressing removed.
    Some doctors may advise the parents to remove the catheter at home (if no stitch was used) but this was very stressful for me at home trying to get the outer dressing off. After the second surgery (using stitch and double nappy) my son went back to see the surgeon to have the dressing removed and the catheter taken out it was very quick and pain free and I felt much calmer having the doctor remove the dressing and the catheter.
    Bathing once the outer dressing has been removed (don't remove any of the inside dressing that may be stuck to the penis as this could rip the skin - this dressing will come off by itself in the following few days) Bathing can be very painful so gently lower the child into a bath of warm water or stand under a very gentle shower. No soaps etc in the shower/ bath, just clean warm water.
    Gentle pat dry, no rubbing.
    Put soft parrafin/ Vaseline inside the nappy, we used a larger size nappy for a few days once the catheter had been removed for extra room and comfort as there was some swelling, but this will depend on what is best for each child.
    Paraffin/ Vaseline can cause a rash if child gets hot so good to also put some sudocream around bum area to avoid rash.
    We kept my son's penis laying up and flat or straight down and flat against the body when changing the nappy so that the penis didn't move about too much and rub on the nappy gusset.
    Surgeon may suggest ointment to put on penis once the dressing has been removed – antibacterial ointment.
    Throughout recovery dress child in soft harem pants/ comfortable soft pull up pants, especially when using double nappy and there is extra bulk.

    PAIN RELIEF
    Please note this is what worked for my son and may not be suitable for your child.
    Ask your doctor what is best for your child but we realised the nurofen and panadol would not be enough of pain relief for our son. Doctors for both surgeries prescribed oxycodene for the first few days which meant our son was calm. Really important to follow surgeon's instructions about dosage etc
    Panadol and nurofen on rotation for first 3-4 days then started to spread out pending the discomfort of the child as the days pass. Panadol or nurofen before a nappy change so the change is as comfortable as possible
    Oxycodone may cause constipation so might need to give child something such as parachoc to soften the poo. Pear juice/ prune juice can also help.
    Very simple entertainment for the child such as watching tv, reading books.
    No climbing, running, quick movements No swimming/ playing in sandpit until wound had completely healed or as per doctor’s instructions.
    Ask the surgeon about the post operative care and what the child can/ can't do pending their surgery and how long the repair/ recovery should take. Each child is different.

    IF A FISTULA DOES DEVELOP
    I found this experience very stressful when we discovered that my son was urinating out of two holes in the 3-4 weeks after his first surgery. It can be quite confronting but we took a few steps to make sure he was well and then looked at the options to repair the fistula.
    Be mindful of fevers and take to emergency straight away if a fever does develop. We checked for bladder/ kidney infection or blockage.
    My son also had an ultrasound and was monitored to make sure urine was flowing properly.
    Depending on where the fistula is, how big etc there could be stretching of the skin, urine pooling under the skin which may cause pain, discomfort as was the case for my son so we went to the emergency department at the hospital where the surgery was performed so they have all information on file and we could monitor the development of the fistula. It took around 3 months for my son's fistula to establish itself and stop stretching and causing pain.
    Nurofen helped reduce the pain and inflammation.
    Ask your surgeon what their post care is if a fistula develops and if they don't have one ask for extra information or seek advice from another surgeon.
    Seek out a second and third opinion from other hypospadias surgeons about how to move forward to repair the fistula.
    It may take 6 months for the tissue to heal after the surgery and the surgeon might suggest leaving any second surgeries until then pending the child's circumstance etc but if the child is in any continued pain/ discomfort take back to the hospital as often as needed.

    I hope this information may help you as I found it distressing to go through this, but by asking lots of questions and seeking several opinions my son had his fistula repaired at 24 months and everything is looking good. We have a check up 12 months after the surgery.

    Hypospadias mum
    Wow I couldn’t read and run, although I do not have a child suffering from this, hats off to you for doing an amazing job! It sounds like a very stressful and high pressure situation at times! You sound like you handled it with stride. Your son is so lucky to have a mother with such patience and strength. It’s so nice of you to share your experience and tips which would be sooo helpful to anyone else having a similar situation unfolding. Good job mummy! Xx


 

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