ANOTHER THING THAT'S STILL THERE

The catheter.  Still there. 

We kind of thought (hoped) the suprapubic catheter for Jonah would be a 2 week thing.

Now it sounds like it will there until his 10-20 appointment/ultrasound.

Jonah, not surprisingly, has thrown us a few curve balls.

After a week of being on the catheter bag 100%- meaning Jonah was not peeing on his own, it was all draining right into a bag, the doctor directed us to start cycling Jonah.  This means that for 2 hours, the catheter was turned off.  Then we would take Jonah to the bathroom and have him try to pee on his own.  After that attempt (and hopefully success), we would turn the catheter back on to see if there was any urine left in the bladder.  Then repeat the process in 2 hours again.

This cycling was being done so the doctor could start to assess how efficient Jonah is with voiding.

First thing, Jonah did not prove to be very efficient.  Most times, we would empty out way more than he peed.  So something is preventing Jonah from emptying his bladder completely.  A very big piece of the puzzle that will have to be figured out.

Second, after about a week of cycling, Jonah started to show signs of another infection.  He would be very tired and lethargic at times.  He started to complain of lower left back pain.  And using urine strips we bought on our own, protein, leucocytes, and blood started to show up in his urine.

Saturday night Jonah started to be in extreme pain, holding his left side.  Then he started to vomit and run a 99.1 fever, although fever only lasted for 30 minutes.  We still felt like Jonah was clearly showing us signs of infection and brought him into the ER.  

The ER tried to tell us that constipation was the problem for the pain.  They gave Jonah an enema which was successful, but Jonah still left for home holding his left side in pain and feeling sick to his stomach.

I think constipation certainly was contributing to the problem, but I don't think it was the primary problem.

However, Sunday and Monday, he complained less pain and there was no fever.  

Monday we had to see the pediatrician for his flu shot.  While we were there, our wonderful pediatrician took a urine sample to run a culture.  

Sure enough, Jonah does have a bacteria growing, however it is one common to the presence of a catheter.  Because Jonah doesn't have fever and seems to feel much better, our urologist is not treating him with antibiotics at this time.

Instead, he is focusing on why Jonah started to develop such extreme left back pain again.  He thinks that Jonah trying to pee on his own during our week of cycling is causing some sort of back up of urine to the kidney again, thus causing the pain.  

So for 2-3 days, we are back on the catheter bag again 100% with no attempts by Jonah to pee on his own.  Over the weekend, we will try cycling again, but this time go every 3 hours and see how Jonah reacts.

Obviously, if you ask me, there is some big issue that has to get figured out with what is happening when Jonah tries to push out urine.  Another big piece of the puzzle.

On one hand I am so grateful for the catheter because it is our safety plan to make sure Jonah is voiding properly and safely.  However, I feel bad this little boy has to deal with this for way longer than I anticipated.  

The good news is he and we are handling the catheter care. The care for us isn't that complicated- just practicing good hygiene, emptying bag every couple hours or so, and changing the dressing each evening. 

And the past few days, Jonah hasn't said anything about left back pain so we are very grateful for that!

So that is the update on Jonah and his kidney/bladder adventure!