Double nappy technique – post surgery care

Let me just say before writing this blog, I work in accounts, I am no means medically trained and you should always seek your surgeons recommendations for aftercare. This is MY experience of hypospadias that I want to share with you.

So, following Bens surgery I was completely blown away by names of medication, how to look after the dressing and the affects of the stent/catheter. Benjamin was 1 years old when he had his first operation which lasted about four hours. Whilst he was in theatre, the nurse showed me how to do the double nappy technique. So here is how I did it….

Step 1 – take a nappy and on the front panel, draw a cross. Then using scissors, cut along the lines to create four flaps. Tape the flap down to the inside of the nappy creating a diamond shape hole. This nappy will be your first one that you place on your child to catch any bowel movements.

Step 2 – gently place the catheter through the hole in the nappy. I found this easier to do before I secured the nappy on.

Step 3 – take your second nappy and do as you normally would when changing your little one. This nappy will catch the urine.

It’s easier than you think! I found it easier to prepare quite a few off the ones with holes in so your ready as soon as your little one is.

Benjamin’s medications were, calpol, nurofen, anti biotics and ditropan. Quite obviously, the calpol and nurofen were pain relief and the anti biotics were to prevent infection. Ditropan was an anti spasm medication….take note this is the important one.
The bladder spasms are caused by the catheter. It creates a cramping or pressure type pain. After Benjamin had his first spasm, I realised quickly the importance of all these medications. It was horrendous to have to watch him in such pain. The side effects of ditropan can be constipation, red face and dry mouth. I always ensured I gave him plenty to drink to try and make him as comfortable as possible.

I devised a medication table so I could see a what time he had which medication and when the next was due. The spasms did subside after a day or two and with his second operation he hardly noticed them.

Now most boys, Benjamin included, still want to get up and run around and play. Great, but parents watch them! The catheter is held in by a stitch, so no ride on toys, jumping etc. Easier said than done, I know, but it will save any unneeded emergency trips.
No baths or showers, so I just sponged Ben down until the stent was out.

And there you have it, how I coped with Benjamin’s aftercare. I hope this may help you a little with your journeys. But please remember to seek medical advice.

Lisa 🙂

Can endocrine disruptors play a part in hypospadias? … What do you think?

An article from the New York Times……..

…………

These days there is also growing evidence linking this class of chemicals to problems in humans. These include breast cancer, infertility, low sperm counts, genital deformities, early menstruation and even diabetes and obesity.

Philip Landrigan, a professor of pediatrics at Mount Sinai School of Medicine, says that a congenital defect called hypospadias — a misplacement of the urethra — is now twice as common among newborn boys as it used to be. He suspects endocrine disruptors, so called because they can wreak havoc with the endocrine system that governs hormones.

Endocrine disruptors are everywhere. They’re in thermal receipts that come out of gas pumps and A.T.M.’s. They’re in canned foods, cosmetics, plastics and food packaging. Test your blood or urine, and you’ll surely find them there, as well as in human breast milk and in cord blood of newborn babies.

In this campaign year, we are bound to hear endless complaints about excessive government regulation. But here’s an area where scientists are increasingly critical of our government for its failure to tackle Big Chem and regulate endocrine disruptors adequately.

Last month, the Endocrine Society, the leading association of hormone experts, scolded the Food and Drug Administration for its failure to ban bisphenol-A, a common endocrine disruptor known as BPA, from food packaging. Last year, eight medical organizations representing genetics, gynecology, urology and other fields made a joint call in Science magazine for tighter regulation of endocrine disruptors.

Shouldn’t our government be as vigilant about threats in our grocery stores as in the mountains of Afghanistan?

Researchers warn that endocrine disruptors can trigger hormonal changes in the body that may not show up for decades. One called DES, a synthetic form of estrogen, was once routinely given to pregnant women to prevent miscarriage or morning sickness, and it did little harm to the women themselves. But it turned out to cause vaginal cancer and breast cancer decades later in their daughters, so it is now banned.

Scientists have long known the tiniest variations in hormone levels influence fetal development. For example, a female twin is very slightly masculinized if the other twin is a male, because she is exposed to some of his hormones. Studies have found that these female twins, on average, end up slightly more aggressive and sensation-seeking as adults but have lower rates of eating disorders.

Now experts worry that endocrine disruptors have similar effects, acting as hormones and swamping the delicate balance for fetuses in particular. The latest initiative by scholars is a landmark 78-page analysis to be published next month in Endocrine Reviews, the leading publication in the field.

“Fundamental changes in chemical testing and safety determination are needed to protect human health,” the analysis declares. Linda S. Birnbaum, the nation’s chief environmental scientist and toxicologist, endorsed the findings.

The article was written by a 12-member panel that spent three years reviewing the evidence. It concluded that the nation’s safety system for endocrine disruptors is broken.

“For several well-studied endocrine disruptors, I think it is fair to say that we have enough data to conclude that these chemicals are not safe for human populations,” said Laura Vandenberg, a Tufts University developmental biologist who was the lead writer for the panel.

Worrying new research on the long-term effects of these chemicals is constantly being published. One study found that pregnant women who have higher levels of a common endocrine disruptor, PFOA, are three times as likely to have daughters who grow up to be overweight. Yet PFOA is unavoidable. It is in everything from microwave popcorn bags to carpet-cleaning solutions.

Big Chem says all this is sensationalist science. So far, it has blocked strict regulation in the United States, even as Europe and Canada have adopted tighter controls on endocrine disruptors.

Yes, there are uncertainties. But the scientists who know endocrine disruptors best overwhelmingly are already taking steps to protect their families. John Peterson Myers, chief scientist at Environmental Health Sciences and a co-author of the new analysis, said that his family had stopped buying canned food.

“We don’t microwave in plastic,” he added. “We don’t use pesticides in our house. I refuse receipts whenever I can. My default request at the A.T.M., known to my bank, is ‘no receipt.’ I never ask for a receipt from a gas station.”

Pre operation hormone treatment ……

I have had the pleasure in speaking to families with hypospadias and sharing there stories, and I’m very proud to say we have some amazing little boys out there!

Hormone treatment – not all hypospadias cases require hormone treatment prior to surgery. From literature I have familiarised myself with, it seems to be the more severe cases that surgeons tend to use this treatment for.

Benjamin’s surgeon decided that we should try the treatment before surgery to try and get slightly more growth. Now any mother with a child dreads vaccination days of any kind, but let me tell you, I think at the time of the first injection I realised that this journey was going to be one of the hardest of my life and now was the time I needed to learn how to be strong.

So Benjamin had three injections, one a day for three days, in the top of his leg. I’m aware of some surgeons using hormone creams also and I’m sure people have had varied experiences at this stage.

Now I know at this point I think I should make it clear, the surgeon was only looking for the smallest amount of growth. I seem to remember it being mm growth, to look at you couldn’t notice a difference.

I know a lot of mums like to ask the question, how do you prepare for surgery…..and I feel the simple answer is, you don’t!! Do your research, speak to your surgeon and hope for the best.
Bens first operation lasted nearly 4 hours. I think I must of worn the floor away at QMC Nottingham that day lol.

I will do a blog about what I experienced after the operation, i.e. double nappy techniques, bladder spasms and pain relief.

I know for any new mum going though this process it must be terrifying, and believe me at the time I was falling apart inside, but we are mums….we pull it together and do what we need to do for our children.

Off to write some more of hypospadias hippopotamus this evening. Keep following the blog, I might post some sneak previews at some point.

Lisa 🙂

Amazing Blog Followers and Support…….

Morning all!

I just wanted to take a moment to say a huge thank you for all the help so far in sharing the blog.  It has been active for less than a week and has had so many hits.  This is exactly what we want and need to happen to help raise awareness.  Keep up the hard work and share share share 🙂

I have updated the ‘about’ page on the blog to share a small insight into mine and Benjamin’s personal experience with hypospadias, but as this blog is about awareness as well as the amazing ‘Hypospadias Hippoptamus’, I will try and post some information about pre surgery and post surgery to help discuss how to prep and how to manage with aftercare.

I hope that the post will assist familes in the same situation and please feel free to contact me to be apart of the campaign/book or just to share your stories.

Lisa 🙂

Graduation – meet me and my boys x

Hypo hippo hits Canada…..

So our campaign to promote the book and raise awareness is under way!!!!

Amy has joined me in our media quest and has started the North American campaign and writing articles for Canadian mums websites. So with Amy on board and myself sharing our great book with Europe, good news should be on the horizon.

I will be sending my drafts article to morethanmummies.com later today so will keep you all posted when it hits the website.

Enjoy the sunshine x

Big media push this week as book is half way there……

Evening all,

As the title suggests, I’m going to try and sort some media coverage out this week. I have lots of advice from some lovely people and need to get the publicity train rolling.

I’m working on an article for morethanmummies.com there website is amazing and I’m honoured they agreed to let me write from them. I’m also going to tackle parenting magazine here in the uk to raise awareness of the condition and our wonderful book.

The book is half way there!!!!! I’m so pleased. I’m sure there will be many more edits but so far so good. I’m hoping to see some draft illustrations by the end if the week…..exciting times.

I can’t do this alone though, so if anyone out there would like to get involved either with the book or the campaign to raise awareness, please please please get in touch. We needs much bigger, worldwide support team for children and there parents and we all need to work together to accomplish this.

It’s a bank holiday here in the uk tomorrow so I’m hoping for sunshine, fingers crossed.

Will update you all soon, keep sharing the blog xxz

Bank Holiday Weekend

Hooray!! The sun is shining this morning which is a great start to the bank holiday .

A big welcome and thank you to everyone who is following my blog and visiting it, the support is overwhelming and I can’t wait to share the finished product with you all, hypospadias hippopotamus.

I’m not working alone on the project. I have the amazing Amy Perras from Canada working along side. Amy’s son also has hypospadias and she is just as passionate about raising awareness as I am. I also have a great guy called Nick on board who is providing illustrations.
I am grateful for anyone who wishes to be involved as this book is a not for profit project.

Lets hope the sun keeps shining and I wish everyone a great holiday.

More updates coming soon x

Who can help raise awareness???

One baby sleeping so time to work…..

Big question to answer is do I set up a charity to help raise money to publish the book and raise awareness?  Long term goal would be to have a support group/network where parents and children could turn to for support.

Raising awareness! If anyone has contacts within the media industry that help us raise awareness please get in touch.

Off to send some emails about the book……I need to find a blue hippo soft toy too x

Hospital trips to see specialists..

After speaking to many parents (mainly in the uk) it seems most have to travel a long way to see a surgeon. My personal experience is we have to make the two hour journey a few times a year and Benjamin hates it. We have found a list of local places close to the hospital that we can enjoy whilst at appointments. Parks, bowling and restaurants are some of the places we enjoy. I feel it’s so important to turn hospital appointments into something more exciting to try and take some of the focus away from what can be a scary time……Would be great to be able to give parents a small leaflet with local areas to visit if you have a long trip to a specialist surgeon.

Ben hates having his surgeon examine him and now at six this is worse than ever. He never allows him to look at where the fistula is so we have to play the waiting game until he gets older. Well Cameron is wanting me to play bob the builder, so will update you all tonight on progress with the book, hopefully I may have some exciting news……..have a great Friday x