Suprapubic Catheter Surgery #2

Jackson has surpassed any expectations that his Urologists have given him, in terms of continence and bladder control.  He's been 18 months-free of UTIs.  His undies are damp most days, but is it because he doesn't want to be inconvenienced?

Dr Shukla planned to give his entire GU system a 2 week " break" by placing a suprapubic catheter in for 2 weeks.  On Nov 9 Jack's Cystoscopy went well and we began our adventure with his "tube".  What an adventure!!!  Half the time he was running around like a crazy person- sneaking off to play tackle football with Cole!!!! The other times were filled with screaming and anxiety and pain.   His urethra burned every time he tried to void.  Days when he played too rough, he peed blood for 24 hours.  2 nights his urine was so pungent that we feared a UTI.  His tube even clogged one night with a white sandy substance... ?

Today (Nov 23) we trekked back to Philly for his follow up tests.  He fought for his life during his lab work.  He tolerated his ultrasound quite well, and the IPod kept him nicely distracted during urodynamics!!  He earned  all 3 of the dollar store prizes I brought a long.  Well, he did not earn one for labs, but I felt terrible that he was so scared.  I could hear him screaming down the hall and around the corner!!

His creatnine actually went UP during this trial.  from 0.6 to 0.7!  It was supposed to go down to a normal 0.4.  We think it's because he had to be forced to drink or eat anything these past two weeks, he's probably a little dehydrated.

His ultrasound still looks very dialated.  The Dr said that it may have improved ever so slightly.  Unless he's having UTI issues again, we are going to let his humongous ureters be!

He did not like the anal prob during the urodynamic study, but really tolerated it quite well.  The worst part was pulling the sensor stickers off of his butt cheeks!  A simple bandaid was placed where his tube had been pulled out.  Amazing!

His bladder held apps 60cc and his diverticulum held apps 65 cc before he had to pee badly.  When he first peed, his bladder emptied nicely but the diverticulum remained.  When we instructed him to pee again, he pushed extra hard and emptied the diverticulum.  The moral of the story?  He must sit to pee.  Void once, sing the ABC song and then void again.    The Dr thinks that he is possibly dribbling after his voids because he is not emptying his diverticulum.

Fun fun fun.  We're home after a 2.5 hour commute and Jackson is playing "Verse Football" with Jimmy (The get to tackle each other).  The squeals are AWESOME!!!!!!!  He started the day in a Superman costume that is for a 3 year old, but he claims it made him more brave!

NOV 9 SURGERY:

We always bribe him for surgery or tests with toys... works pretty well and I am not too proud to admit- or suggest- it!

LEGOS!!

getting a little nervous... Silly Juice has not kicked in yet

Post Op, he did not want to wake up.  

On our way!!!!!  We stopped at a ret stop so he could vomit all over their family bathroom.  You're welcome.  The rest room was cleaner when we left, then when we darted into it.

Jimmy was very curious and Jackson was excited to show/team him about the tube.

Day 1 was  a rough one.  Lots of bladder spasms and pain.  It burnt him to vow, then entire 2 weeks.

Site was healing.  We usually had a dressing with 2x2s and tegaderm on it. 

NOV 23 - TESTS

 We ate at Wahlburgers on the way there!
Jack's face is SO FUNNY.

Not any better than any other burger joint  :(

We took lots of selfies to kill time.

He was TRYING to lick me.

ultrasound

He was proud of himself when he waved at sick kids and made them smile.

Reason #42,691 I love Jason

He can't even fit 1 cheek on the little seat.

The boys in their flannels ready to run away from the hospital when it was all over.