THIS IS MY SUPERHERO!

This little guy is a superhero to me!

He has faced many scary things in his life, and yet he just keeps laughing, smiling and 

having fun through it all.  

What a life lesson for all of us!

I have often said these boys of ours teach me life lessons all the time.

Our latest adventure with Jonah has been brewing for the past few weeks.

In early August, Jonah started to show symptoms of a urinary tract infection.  We took him in for a urine culture in mid August.  The test came back contaminated twice which made our pediatrician decide to deal with Jonah's problem of constipation first and see if that would clear up some of the UTI symptoms he was experiencing.  

Of course, mom guilt has to enter the picture at this point. Was I not insistent enough that something was wrong a few weeks ago?  Did I miss something or not explain things clearly enough to let the doctors know what was going on with Jonah?  Trying to work out that guilt as I process these past 24 hours...

However, there are some things about Jonah that make diagnosing difficult:

1. Jonah does not present "textbook".  Often Jonah does the complete opposite of what the books say a person will experience.  This makes it hard for all of us, parents and doctors, to assess what is really going on with him.

2. Jonah has a very high pain threshold.  Jonah can act like he is fine and then all of a sudden present as very sick.  Then in a few hours or the next day, he will act normal again.  Very hard to assess what is truly going on.

3. Jonah has a goofball personality which means his primary goal in life is to have fun.  So he is not the most reliable source when we try to ask him what hurts or what is wrong.  Sometimes he just acts goofy instead of being serious about what is wrong.  Sometimes he likes to pretend something is wrong when it isn't.  

4. Jonah is nonverbal so he can't tell us what is going on.  He can gesture and sign and try to say some words to us, but we don't always understand.  If we ask him questions, we run up against point #3 which is his goofy unreliable personality.

5. Jonah has weird things happen to him medically.  This is not our first rodeo with Jonah: pneumonia, kidney infections, tooth absesses, strep, thyroid, respiratory issues, allergic reactions to meds, odd bloodwork etc.  As I often say to Jonah, "Do you look for trouble or does trouble find you, Jonah?"

So for the past few weeks we have been dealing with on/off symptoms of a UTI with Jonah. At times, he would convince us that he definitely wasn't feel up to par, but then the next hour/or day, he would be absolutely fine.  

Then last Sun, 8-23, he ran a low grade fever and seemed to be complaining of pain on his left side.

However, Monday through Wed, no fever and not much complaining of pain. He actually seemed fine.

Thursday he was very tired and just wanted to sit by me and cuddle.

Then Friday evening, he ran another low grade fever and seemed very uncomfortable.  

So Saturday morning we brought him in for another urine sample.  This one came back with protein, blood, and white blood cells in the urine-all signs of infection.  Ended up being aerococcus urinae bacteria which is very rare and seen usually only in elderly men with prostate or catheter issues.  Obviously Jonah doesn't fit this profile.  See what I mean about Jonah doesn't follow the text book?

The rarity of the bacteria caused our pediatrician to reach out to Jonah's urologist at the Children's Hospital.  

Background information: before Jonah was born, he was diagnosed with a bladder/kidney defect that would have to be surgically repaired when Jonah was one year old.  Since that surgery, we have had follow ups with the urologist to make sure the repair was still working.  All our followups have been great reports.

However, after a ultrasound and x ray yesterday at Children's, we found out Jonah's left kidney is enlarged and some enlargement on the right also.  In other words, we are back where we were presurgery when Jonah was under one year old.

Now the million dollar questions start:  Did the repair stop working and cause the UTI infection?  Or did the UTI infection cause the kidney to back up and stop draining properly?  Why is Jonah holding his urine and not emptying his bladder completely?  Because of the UTI or because there is something not working between the bladder and the kidney?  

All questions that need to be answered. 

So that is why Jonah is having surgery on Friday.  Partly to have a camera go in and take pictures and investigate what is going on.  Partly to stretch the bladder to ureter connection and place a stent to make sure things drain properly.  And partly to insert a temporary catheter so that we have a plan B if Jonah doesn't void the way he should until the doctor knows what is exactly wrong.   

 So for now school is off the table completely until Jonah recovers from this surgery and is done with the catheter.  

We are hoping the original surgery done at one year old will not have to be redone.  

Just waiting for more information before we know how to resolve this.

However, the miracle of Jonah is he went to the hospital yesterday smiling, he left the hospital smiling, he went to bed last night smiling, and he woke up this morning smiling!  Nothing gets this kid down.  He knows and trusts that he is loved and cared for,  and that life is good even when it's not.  

What an amazing person!  

That is why Jonah is my superhero!