PUZZLE STARTS WITH "PEE"

 

I hope someone gets my urology humor in the title...

Today was Jonah's 6 month urology check up.  

His last kidney/bladder ultrasound was in December 2021.  At that time, the left kidney was slowing decreasing in size.  The doctor was quite hopeful that if we waited for 6 months, we would see more decrease in that left kidney size.

Unfortunately, that is not what we saw in today's ultrasound.

Left kidney was 13.9 cm in Dec 2021.  Today it was 15.6 cm.  At it's largest back in Aug 2020 when all this trouble started, Jonah's left kidney was 17.3 cm.

Today the right kidney was also slightly larger from Dec 2021, 9.6 from 9.4.  But the more concerning thing was the doctor could see some slight dialation in the right kidney which had been normal in December.

Jonah's bladder was also very distended.  Normally someone Jonah's weight would be able to hold about 250 ccs in his bladder.  Jonah's bladder today had over 500 ccs of urine.  

Once again, Jonah is presenting a puzzle to the urologist.

What he thinks is happening is that Jonah doesn't adequately empty his bladder.  This is happening because of one or both of these reasons:

1. Jonah doesn't know, doesn't try hard enough, or loses focuses and doesn't pee completely when he goes to the bathroom.

AND/OR

2. When a bladder is stretched out or distended, it can start to not empty efficiently.  So Jonah may be doing things correctly, but his bladder may not be letting the urine out the way it should be because of being so big and loose.

Next thing, because Jonah is not adequately emptying his bladder, this causes pressure to rest against the ureter openings (right and left) up to the kidneys which is causing the kidneys to not be able to adequately drain down to the bladder.  Jonah's left kidney is more susceptible to this pressure blockage because of that ureter is the one that needed to be reconnected when Jonah was 12 months old due to a congenital defect.  There may be scar tissue from that surgery that is making this side "thicker" and more easily blocked.  

If this were another child that the doctor was seeing this in today, he would probably recommend immediate surgery to go in and try to poke through and stretch that ureter to bladder connection.  He would also insert a temporary stent until things could drain and get back to normal size.  A suprapubic catheter might also be another option to add to the solution.

However, Jonah doesn't handle stents well.  He is very sensitive to how it feels and tends to hold his urine even more when he has a stent placed.  Both at 12 months old and then back in Fall 2020, he had several severe kidney infections because of holding urine because of the stent.  

Jonah also had a very hard time weaning off the suprapubic catheter.  What should have been a 2-4 week placement back in September 2020 ended up being 9 months!

So the doctor would really like to avoid a stent or catheter.

For now, he would like to have us double void Jonah every 2 hours.  This means have him go, and then a few minutes later have him go again.  We had been doing double voiding morning, noon, and bedtime.  Now we have to do it every bathroom time.  

This sounds a lot easier than it actually is.  Jonah gets very defiant when you ask him to go again.  We are opening ourselves up to many power struggles for the next two months.  But if a "simple" bathroom technique can prevent surgery, we will do the best we can!

Another ultrasound on 8-8-22.  If things are improved, then we are probably looking at long-term double voiding and long-term pull ups since there is on way we can ask him to try and keep underwear dry- that would be way too confusing for him when we are also needing him to pee!

If things are the same or worse, then it looks like some kind of surgical intervention is in the picture.

I would think at some point if things don't improve, another renal function test will have to be done because the doctor said he is concerned that this severe dialation on the left kidney will start to decrease it's function.

So as is typical for Jonah, he's not typical.  He doesn't follow the textbook description or the normal trajectory of anything.  Hence the reason for the puzzle joke in the title.  However, nothing about today seemed very funny except the fact that Jonah is an awfully cute and sweet little fellow.  And the good news he is feeling good, no kidney infections despite this severe dialation.  Probably the daily antibiotic (yes, he's been on a daily antibiotic since November 2021) is helping him with that.