Benjamin’s Bladder Exstrophy

09/04/2026

PMTS- Does Benji have it?

Pediatric Medical Traumatic Stress or PMTS became a small topic of discussion between his pediatrician and I. During his wellness appointment, many questions are asked about speech, hearing, eyesight, of course his medical history but also about how he plays.

What is it? PMTS is a set of psychological and physiological responses in children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.

It can show up as flashbacks, nightmares, being afraid of and avoiding doctors offices or people in that environment, being easily startled by things, trouble sleeping, and of course anxiety, depression, mood swings, or feelings of detachment.

But it can show up in other ways, like through play.

While I’ve never been worried about it at this point, I’ve noticed Benjamin does play in a very specific way. He’s got an incredible imagination; he loves Spiderman Miles Morales and Lightning McQueen or really any car or truck. The way he plays with these characters though is always the same.

🚙 A car is driving- the car crashes (usually his car)- the ambulance(usually mommy) has to come save him- all is well and the crashed car is fixed- 30 seconds later BOOM it crashed again- the scenario is on repeat.

🦸‍♀️ Even Spidey needs saving (his character)- Spidey gets hurt-Ghost Spider (mommy) comes to save the day- Ghost Spider asks if he’s okay, gives a bandaid, checks him out and makes sure all is well- they both go off to save people together- but then Spidey gets hurt again and GS needs to come save him- repeat.

🦕 🦖 the same is with dinosaurs, stuffies, action figures, whatever Benji is playing with.

Trauma
Aid
Repeat

I had always figured it was Benji coping with all his medical “trauma.” I put quotes around that because Benji has always taken his illnesses, hospital stays, and surgeries really well. Once he starts to feel good, he seems to treat it like a little vacay and loves the attention.

But he’s only a toddler and while he’s super smart and communicates better than any other toddler I know (yes I’m biased) and he’s very in tune with his body, I still may not know what’s going on in his brain. He may not even know.

And that’s okay. I’m very happy he is working what’s happened to him through play and we’ve been told it’s very normal.

The fact that there’s always a “hero” in his stories (it’s important to know I always allow him to be the “director” of his stories) means he’s confident someone with come and save the day. So, the pediatrician assured me that his daddy and I are doing a good job at letting Benji feel we will always be there.

There was nothing concerning about his play. Perhaps we can try to help “direct” or “produce” his stories in a different direction but never in an aggressive way. If this is how Benji wants to play, it means this is how he’s coping and his little brain needs to go through the motions of it.

Right now, for Benji, there’s no concern for PMTS but I’m curious to see if other hospital kids/ Bladder Exstrophy Epispadias kids have had similar imaginative play experiences. 🤔

I will point out that while most of the time Benji is the “hurt” or “lost” in his imaginative play, sometimes he does want to be the “hero.” Often times when we specifically play something like “going to the doctor,” he wants to be the doctor. He’s in charge and he’s helping the stuffies feel better.

His favorite car right now is an ambulance, he carries it with him EVERYWHERE! So maybe we’ve got a little future EMT? 🚑 ✨

08/30/2026

This recently came up in a BEEC (Bladder Exstrophy Epispadias Complex) group… how do I cover up the exposed bladder?

Well, when Benji was just an infant and his bladder was still exposed (for 4 months!!!) we needed to keep it clean and protected.

Who has time to cut cling wrap squares every diaper change? Not me… so I found a solution that worked for our family and may work for yours.

About every two weeks, I spent a morning folding, cutting, and placing these little squares in between index cards and inside a little box. I had one for home and for his diaper bag.

If you know me, you know I like to keep things simple and organized for when I need it. So I didn’t mind putting on some music and spending an hour getting this done for my son and his diaper changes. It’s tedious work but it was worth it.

BE diaper changes during this stage can be messy! So we tried to make it quick. (Just wait till you’re fiddling with a catheter if your baby needs it 😂)

So happy I learned this trick!

08/26/2026

Way to go Dr. C! 👏🏻✨

A new surgical option is giving our pediatric urology team even more ways to care for kids with complex conditions.

Dr. Chad Crigger and our team recently performed South Carolina’s first pediatric single-port robotic surgery, using the technology for a complex bladder reconstruction.

With just one small incision, the approach allows surgeons to perform complex procedures with greater precision while reducing scarring and supporting recovery.

It’s an exciting step forward for pediatric care in our state and another specialized option available to kids and families closer to home!

Read more: https://musc.co/4qNLcWf

08/20/2026

🧡🧡🧡

08/15/2026

Lots to do at MUSC Children’s Health !

Their facility is by far one of the most beautiful campus’s we’ve been on. They have an incredible children’s play area, indoors and outdoors, with some pretty views of the river. They also have adorable fish and aquariums in the cafeteria, therapy dogs that come to visit, a breathtaking chapel, and more!

While we were there for one of Benji’s surgeries, which in general can be a lot, MUSC did an amazing job at taking off some of the stress. We are very thankful for all they provided to help make our stay easier.

Medical University of South Carolina (MUSC)

08/14/2026

✨jail break!✨

Benji was able to come home Wednesday evening feeling pretty good. He still wasn’t 100% but the fever was gone and he was more lively.

After all the scans, tests, and talks with urology and the teams, we determined Benjamin ONLY had COVID.

Why did he have so many UTI symptoms though? Good questions!

I didn’t know this but Dr C, his urologist from MUSC, explained COVID actually affects the urinary system in a big way. So while people may have covid and not experience the classic flu like symptoms, they can still have other problems that affect other parts of the body. For a lot of males, it’s the bladder and kidneys! 😱

And that’s exactly what happened with Benji. He was having all the classic UTI symptoms, the ones we are familiar with and more. Other than a fever, he had no flu like symptoms.

This just goes to show though, Benji can NOT get sick.

I feel a “normally healthy” child may be able to fight off an illness pretty well. Or at least well enough to not have it affect other systems in the body.

But for Benji, every single time he’s caught a cold, strep, RSV, Covid … he’s been incredibly ill and his urinary system freaks out. His body can’t handle it right now. Sometimes we come out of the hospital and yeah, he probably didn’t have a true UTI. But most of the time a bacteria does grow and we find he was fighting a viral and bacterial illness at the same time.

So I’m sorry to my friends and family, but I’m gonna be THAT mom. I’m going to be extra cautious. His social bubble is going to continue to stay in small settings where the people around him understand his needs and where there’s a strict “sick policy.”

All until we can figure out how to possibly boost his immunity. Benjamin is otherwise a pretty healthy kid… until he catches something and then he’s not, and it gets bad.

Probiotics? Supplements? A different prophylactic? We will be speaking with his teams to figure out how to help Benjamin.

In the meantime, he is well. He’s been without a fever for 48 hours and is back to normal. We’ve been told he can get out of quarantine now.

Praise God for Benji’s health! Praise God for answers! ✨

Thank you everyone for your prayers!

08/12/2026

Results? 🤔🔎✨

COVID-19 … and we got moved to a different room to be in quarantine.

He’s better today but still in a lot of pain and still not quite himself.

While his labs came back okay and the xray, ultrasound, and urine culture came back normal, we still don’t know why he’s feeling the way he is.

Sure, he’s got COVID but other than the fever it still doesn’t quite explain his other urinary symptoms.

He’s not even snotty. 🤷🏻‍♀️

We are pushing for more focus on the urinary problems like his pain while going potty, the swelling of his glands, the bright neon color of urine and metallic smell (despite having normal diapers all night and becoming well hydrated again), the moderate back pain and severe stomach pain that comes and goes. All including some other symptoms that haven’t happened before with a UTI in Benji, like unfocused eyes and eye pain and mild swelling w/ guarding in his right leg.

Still trying to figure things out and create a better treatment plan for him; knowing we can’t do much but provide comfort for the COVID.

Also trying to figure out good questions to ask the doctors when I see them next. 🤔

Definitely a lot more snuggles today.🧡