To read part 1, go here.
The day of the urology appt @ the Big Hospital dawned and we headed down bright and early. Between testing & appts, we were told to expect to be there all day long. Yay, what fun. :~ p
When we arrived at the radiology appt to check in, we were paired with a Life specialist who went with us to all the appts to help explain to Fishing Pole what was going to happen and to help distract him with toys and goodies.. lol. I love these people. Our Big Hospital has only had them for a few years and it's great!
First up with a CT of Fishing Pole's spine. The drs wanted to check for Spina Bifida since the xray showed the spina bifida occult defect. No MRI's due to his pacemaker. Fishing pole went in & climbed up on the table and laid right down. The radiologist laughed at how quick he was and then asked him to please turn around and face the other way! lol! His last CT was of his brain so naturally he wanted to put his head at the CT end.. :) As soon as we were done, the radiologist quickly assured himself that we would be seeing the dr today. Thanks dude, that always makes me feel better.
Next we had a VCUG (Voiding Cysto-Urethrogram) where they basically cath Fishing Pole , fill him up with some saline and get a good look at everything. They also tried cathing the 2nd urethra but couldn't get it. As she began filling his bladder up, the nurse/radio lady kept telling Fishing Pole to let her know when he had to pee. We waited.. and waited.. and waited. She'd ask again occasionally and he'd always reply - Nope. Our life specialist & I stood at his head while the LS held her iPad for Fishing Pole to play games on. All of the sudden, we hit a full bladder and he exclaimed "I Have to PEE!!!" The nurse told him to hold on just a sec so she could take everything out, but he just started peeing everywhere.. Remember that curvature issue? Yeah, the Life Specialist & I both go sprayed.. Fishing Pole started screaming "It's in my Eye!! In my EYE!" Towels were quickly thrown over the offending spray while everyone assured him that it was just water they had put in him and wasn't really pee in his eye.. lol.
I admit that once I quit laughing at the drama- I was a bit relieved. I have repeatedly told the drs that he can sometimes feel if he has to go and doesn't have control once he does.. Everyone kept telling me that they've never heard of someone feeling it sometimes but not others.. Apparently he only feels it when he is completely full and then he has no control.
Once everyone was cleaned up, we headed upstairs to our actual dr appt.
It was once again a Good new/Bad news situation.
Good news :
-the VCUG looked good. No bladder spasms, nice size bladder, no refluxing to kidneys..
- CT showed no spina bifida
- accessory urethra ends at the public bone area and doesn't actually connect to anything (or so they could tell since they couldn't really get it cathed)
- Did you know that when your urethra forms, it starts at both ends and meets in the middle? See, you learn something new everyday! So Fishing Pole's extra urethra also started a tad at the bladder end and there's a little stub there- which looks abnormal but they have decided that it's okay and the flow looks normalish so we won't be bothered with it at this point.
- CT showed several other spinal issues
- tract from the sacral dimple (deep dimple just barely above his butt crack) to his spinal cord.
- spinal cord is down by his tailbone --when it should be up more at the L1 area.
So..... we immediately got a referral to neurosurgery b/c it's looking like tethered cord syndrome- which would explain the incontinence.. UGH!
And that is where we are now.. We have another week until our neurosurgery appt (although they got us in fairly quickly, which is nice.. I still hate waiting).
Dr. Weinie is performing the lovely surgery on Fishing Pole bright and early tomorrow morning to fix the congenital defects on his boy bits.. I'm stressed a bit , but I always stress at surgery time. FIshing Pole, on the other hand, is fine with penis surgery but is more worried about getting his tonsils out next month (sleep apnea). Go figure.
Wish us luck !