Clayne has had a rough start in life but continues to show he is stronger than his condition, and will fight the whole journey. Craig and I want Clayne to have every opportunity as he grows to develop his personality and life goals. We don’t want him to feel restricted or upset about the factors he has to face as a result of his condition. From what I have seen Clayne do in the last 7 months, I have a feeling he is going to be strong, independent and resilient. Here are our 10 wishes for our baby boy:
Not to be restricted by his condition.
To be loving and respectful.
Be creative, be bold.
Everything happens for a reason, rise above the downfalls.
Try his best, we will love him for what he can do, not what others can do.
Never feel restricted or limited in his goals – everything can be his.
To be who ever he wants to be, whether that be in work, or relationships.
Never feel pressured.
To live his life and not get bogged down with thinking about money being all there is.
My baby boy, you have strengthened your dad and I. You have given us so much love and given us a stronger purpose in life. No matter how old you are, I will always see you as my baby boy, my cheeky dimpled baby boy.
Hello all and welcome back to my son Clayne’s journey. Clayne is now 7 months old, and the time just keeps going by faster and faster. On the 30th of January Clayne had his third surgery in Bristol. This time the plan was to carry out a check cystoscopy (a camera inserted via his penis to look at his bladder), as well as a urine stream check….. They were unsure whether he would need valve removal or not depending on their findings.
To read about Clayne’s journey so far please refer to the above tabs (if you’re on a mobile then click on the menu tab).
I forgot to update you all on his check up with his renal consultant in November. Clayne has been diagnosed with the very early onset of Kidney disease, we were aware this was a high possibility however I was still upset and shocked to believe it would happen so fast. I think as parents we never want anything to happen to our children and I always think “it will never be us”. On the other hand Clayne is coming on leaps and bounds with his development. We had been catheterising for about 2 months at this point, and now it had become second nature.
In January 2019, Clayne had an USS of his kidneys to see if they were reducing in size. The results were fantastic, Clayne’s kidneys and bladder are reducing in size, his right may be larger but the reduction in size is positive. The Urologist (Surgeon) explained that the walls of both kidney’s and bladder are still thick and tense but this will probably remain throughout his life due to the damage caused by the valve in the womb.
Clayne now weighs a whopping 20lbs at the age of 7 months…… WOW my little chunky monkey. He can now crawl, stand with assistance, and he absolutely loves to walk whilst holding our hands.
Craig took Clayne into theatre, I just couldn’t face watching my boy go limp in my arms. The Surgeon said that there was no remaining valve tissue, or any regrowth which is amazing news, and his urine stream when tested was so good that he hosed down half of the theatre staff (that’s my boy).
I think the surgeon was genuinely shocked with how far Clayne has progressed in his condition. For a baby to be born with the worst valve (completely blocking his urethra) to now have no valve left, have a fantastic urine stream and be as well as he is is extremely rare. He reckons a couple more appointments with him at Bristol for a few scans and check up, with hopes to stop his antibiotics early and completely stop his catheter by the time Clayne is 1 years old.
This is amazing news for us. We were originally told the catheter could be years, and he could be taking antibiotics until the age of 3 at least.
The next step is follow up appointments for probably a lot of his life, especially regarding his kidneys now. Within the next year we have planned two particular scans – DMSA (insertion of dye as well as a scan) for function tests. And a Urodynamics test.
To see more about my son’s condition check out the Facebook page myself and another mum have created.
So myself and another family have come together to raise awareness for Posterior Urethral Valve. We have set up a Facebook Page , not just for UK parents but for everyone in the UK wanting to educate themselves.
This condition is pretty rare, and before our son was diagnosed with it, myself and Craig had never heard of it.
I would like to set up some new posts about different treatments for our son Clayne. Tips and tricks we have learnt, and more.
Today I wanted to share the two catheter options that were given to us when Clayne was 2 months old. The selection is small. In fact there is only two brands, which I am going to introduce you all to today.
I have put the photos on a red background as with a white one it was difficult to show the clear catheter.
Here we have the two offered to us. Obviously as Clayne gets older they will increase in width, and the selection will increase.
The two given to use to try were:
1. SpeediCath standard (Top green packaging).
2. WyCath H20 (Bottom clear packaging).
Each catheter is an intermittent catheter, therefor there is no balloon on the end to keep it in the bladder. The idea of these are to insert them into Clayne’s bladder via his penis to drain off residual urine and then remove straight after. Literally a 3 min process at most. And the whole catheter does not go in, about 5 cm stays out. We only insert enough until we see urine coming out the end of the green port.
Lets discuss first, SpeediCath.
This catheter comes ready lubricated, this is specifically for boys. In case you didn’t know Male and female catheters are different lengths, due to the urethra’s being different lengths.
This catheter has a urea based coated lubricant. Reports from older children were that the coating stings a bit. This made us a little hesitant. Our little boy is already going to go through a lot he doesn’t need to feel stung every time we use it.
Anyway we tried this at home, we did found that Clayne did cry a little with this catheter. We also found the lubricant dried out fast and we struggled to insert the catheter as it at first is too slippery to guide in with our hands.
Not our favourite. Therefor we no longer use this one.
Our favourite catheter we currently use is the WyCath water based lubricant catheter.
Clayne tolerates this one so much better. Everything is in one.
My favourite part was that the packaging came apart and left a handle to guide the catheter in.
I am a nurse and I am very hygiene conscious and want to reduce urine infections as much as possible. In a hospital setting this whole process on a patient is Sterile, so to completely go against that felt so unnatural to me.
We were told we do not need to use gloves as the catheterisation will take place in our home and Clayne would be used to the “BUGS” in our home. Nooooo, I still do not like the idea of not using gloves and touching the catheter (we do wash our hands every time before and after).
So to have the handle which is clean on the inside, makes me feel more comfortable.
Here is the packet completely separated.
Far left silver packet is the water lubricant. All we do is pop the packet by pressing hard on the blue plastic button whilst the packet is unopened. This then pours the water straight into the far right packet which has the catheter inside.
The middle section is the handle, which rips away.
And of course we have the catheter at the top.
At the top you can see the handle with the catheter inside. We use this to guide the catheter. This reduces the amount of hand contact to a bare minimum. The tearing it away from the rest of the packet is the hardest, as you can see it is not a clean rip, but works anyway.
And again the bottom packet would be filled with the lubricant to re dip if needed.
The white spot on the bottom packet is a sticker to make everything a little easier for us if out and about.
Craig and I plan to post about catheter insertion in the future, as our teaching was vague. Plus with a 2 month old, it becomes very tricky. Especially when they kick about and try to grab your hand. If there is anything else you would like to know then please comment below. Or message us on our new page.
Clayne is now 10 weeks old as I am writing this. He has come on leaps and bounds, he is now 59 cm long and weighs 14 lbs, my little chunky monkey.
He recently had his visit with a Nephrologist/paediatrician who said Clayne’s bloods (mainly his creatnine level for his kidneys) are improving but not as fast or as well as they would like however a recent ultrasound scan (USS) showed the outer layers of his kidneys were reducing in size but the inside has stayed enlarged. This is still worrying but encouraging as well. The same goes for his bladder. Clayne has been doing very well still passing urine but was straining at times.
I also learnt that the antibiotic Trimethoprim used for urine infections that Clayne takes at night, will continue until he is potty trained. Not that he minds I think it has become part of his bed time routine now.
On the 4th September we took a trip to Bristol for Clayne to have a cystoscopy (camera via his penis to look at his bladder and urethra), as well as a circumcision. This is to reduce the chances of him getting a urine infection in the future when we start to catheterise intermittently.
The Cystoscopy showed that the valve had grown back a small amount, and was removed. Due to no bleeding he did not need a catheter post surgery. We were then informed his bladder is looking better but as he was one of the high risk children with PUV he will still need to be monitored and we need to learn to catheterise sooner rather than later.
The benefits of learning catheterisation now is that at at his current age he will grow to find this as a part of his life. Hopefully one day the aim is to wean the amount of times we catheterise so that he won’t need our help and will be able to empty his bladder fully.
We were not prepared to see how sore he would look post circumcision, poor little guy. The care for this is easy. Cream twice a day, however my son is a little fidget so nappy changes result in me scrunching up my face and making ouch noises as I don’t want to hurt him.
Being a nurse comes in handy with all these skills, meds and treatment. But looking after my son is a whole new experience. I worry so much and I am more involved and aware of what is happening compared to my other half who is learning parts of the anatomy and inner and outer workings of the kidneys and bladder in depth.
We have to go back to Bristol in December for another cystoscopy as the surgeon would like to look without having to remove valves, to be happy and sure they have stopped growing.
This photo was taken the night he was born 26/06 Tuesday. As soon as he was on Neonatal intensive care (NICU) they placed a catheter into his bladder because his abdomen was swollen and he was showing signs of having PUV. He was put on a small amount of oxygen because his chest x-ray showed that he had a bilateral pneumothorax (air between the lung and chest wall on both sides, he was showing signs of respiratory(Breathing) distress once born.
Due to all the blood tests and blood pressure checks they asked if they could put in his umbilical cord an arterial line which would measure his blood pressure, and a venous catheter which they would use to take bloods from. This would reduce the amount of needle punctures. Of course we agreed, anything to make it easier on our little man.
The following day (Wednesday) they carried out an Ultra sound scan of his abdomen, this showed he had hydronephrosis (too much fluid in his kidneys), again they said it still looked likely that he had PUV but would like to do a more in depth scan called MCUG ( involved dye being put into his bladder to highlight the valve if he had it). They managed to squeeze him in on the Wednesday and then the condition was confirmed the same day. Our little boy had PUV and needed to go to Bristol ASAP for surgery.
Above is Clayne in all his gear ready to be transported to Bristol for his surgery to remove the valve. It all happened so fast as he ended up travelling there at 1930 that evening. I still wasn’t discharged and therefor got transferred myself to the same hospital. This was an emotional time for us both, Craig held himself together for me, but he too was worried for our little boy.
We did not arrive in Bristol until midnight, we quickly saw our little boy and went to bed.
Thursday morning we met with his surgeon and anaesthetist. I was very emotional, my little boy was not even 2 days old yet and had already been through so much.
The surgery involved them going into his bladder via his penis with a small camera (Cystoscopy) to see how bad the valve was. According to the surgeon post procedure, the valve was the worst it could be, completely blocking his urethra causing the bladder to swell and develop nodules which will take a long time to relax.
The surgeon removed the valve and replaced the catheter, which would have to stay in for a couple days (was removed on the Monday). This allowed the swelling to reduce and give our little boy some comfort. He was so brave and did not need pain relief post.
Because of his enlarged bladder and the strain of it being so tense our little boy will be monitored for many years. He is at risk of retaining urine, therefor myself and Craig will be learning how to catheterise him for the future.
Post surgery above.
He has a 1/3 chance of developing kidney disease. The surgeon said he is a high risk due to the damage the valve has caused. We will be seeing a renal (Kidney) consultant regularly for blood tests to see if his kidneys are failing, if they are this means he could require a kidney transplant. However this may not show for a year.
As he gets older and his bladder is relaxing, like I said it can take years…… he may not be able to control his bladder all the time. This is something we haven’t come across yet/ discussed with the team, because that’s too far in the future. Therefor there is no plan as of yet.
The two photos above were on the Friday. Our little boy was moved from NICU into the high dependency ward. We were finally allowed to change his nappy, dress him and get cuddles when we wanted. As you can see he had a lot of attachments, so we were both nervous and it took two to get him out of his cot. The plan was that the catheter would come out in a couple days but that ended up being Monday. Bloods to be taken regularly, plus monitoring how much he was passing via the catheter. The risk was that with the catheter he may lose too much urine causing an imbalance in his electrolytes.
Over the weekend I was able to breast feed him, get plenty of cuddles and try skin to skin. But as you can see from the above photo he became very jaundice, therefor on Monday required the UV lights overnight to help. He was nicknamed my little Simpson baby.
On the Monday they confirmed that we will be going back to Bristol in September for a follow up operation. The plan is to have another look with the camera to see how his bladder is coping and whether the valve is growing back. At the same time unfortunately our little boy will be circumcised to reduce the risk of infection in the future.
Finally on the Tuesday night we got to go home. We are still giving him antibiotics every night to cover any risk of a urine infection.
Clayne has been a huge learning curve for us, and our little boy has been through so much, he will always be our special little man.
If you want to know more about Clayne’s journey, or you baby has the same condition please follow, like and comment below. I would like to interact with other parents, or maybe you would like to know more. If you would like an update on how he is doing in September please comment below. 🙂
Hello all this is part 1 of 2, the second will include the little journey my son Clayne had once he was born.
I have tried to shorten this post as much as I can because it’s a LONG story but I don’t want to bore you all.
On the 24/06 I was booked in to be induced with my little boy due to his tummy being enlarged ( down to his condition PUV- in the next post part 2).
Not much happened on the Sunday, I was admitted, observations checked, examined, monitored and then the Pessary was placed. I was told I would be checked in 24 hours and that the pessary can last for up to 30 hours.
On the Monday not much happened until the afternoon, I was starting to get some twinges but was told my contractions were not painful and I was no where near regular.
I was again monitored and just advised to use the birthing ball.
Due to the ward being busy I was not checked at 1530 for my 24 hour check, therefor I was next checked at 2100, at this point I was starting to feel regular contractions and they were increasing in pain. When the midwife examined me she said I was only 2cm but was willing to remove the pessary.
After a couple more hours at about midnight my contractions were extremely painful, they kept monitoring me and said my contractions were all over the place and that this could go on for hours before I began having regular contractions.
I was taking Paracetamol and Oramorph at this point for pain relief. By 1 am I couldn’t take the pain anymore, the pain relief was not taking the edge off and I asked to be examined again. The midwife looked at how often my contractions were and said I still wasn’t regular and there was no way that I was far enough along to go to labour ward. After I begged her to check she examined me and said that I was actually 4 cm and ready to go to labour ward……. this was the best news ever.
Once on labour ward around 2 am I was immediately offered gas + air which definitely made me feel drunk ( no other way to explain it). After this bits and pieces are a little foggy and time flew by. At around 10/11 am I was so tired, and the pain was just increasing ( little did I know until I was 10cm that my little boy was turning with every contraction and was then back to back). At this point I opted for the epidural which worked so well for me, I was then able to nap on and off between contractions and get some energy. This did mean that I had to have a catheter inserted due to reduced mobility and strain.
At around 1500 I was examined and told I was 10 cm, Craig and I were so excited and ready to go. My contractions were never regular but the midwife was monitoring and telling me when to push. After 3 contractions and pushing for a total of 30 mins my little boy was not moving and his heart rate was dipping with each contraction.
My midwife called in another nurse who examined me and said that my little boy had turned and that I was going to need help to deliver him.
The doctors were already aware of the complications my little boy could have once born so they were keen to make sure he was not stressed further and decided to take me to theatre. ( Link to complications – My Baby pregnancy update – possible concerns – Posterior Urethral Valve???)
In theatre they explained they would like to do an episiotomy (small cut – I won’t go into details about the after care), use a Kiwi suction cup to turn him which they used twice on him, and then use forceps to guide him out while I pushed. If this didn’t work then it would be an emergency c section.
I was very lucky to have the original plan, which meant I did not need the C section.
Pushing was very odd as I was completely numb from the middle of my abdomen right down to my toes, I didn’t feel I was doing much at all.
It was very scary having about 20 people in the room, 4 of them were just for my baby so they could take him to intensive care.
At 16:51 my baby boy Clayne Joseph Allan Jones was born. My midwife was so lovely, she managed to get Clayne so I could cuddle him before they took him to examine him. If it wasn’t for her we would have never got a cuddle.
The whole birth was emotional for me and Craig but in a happy way, we both instantly fell in love with our little boy.
I will complete a separate post to explain what happened to Clayne once he was born and his first week in this world. All spent in hospital, so please follow and keep an eye out.