TUBING ADVENTURES!

Are these the images that popped in your mind when you read the title of this blog post?

Our family having fun on a beautiful winter afternoon as we tube down a snow covered hill?

Or even better, our family enjoying a winter get away somewhere warm where we are having fun during a day of boating?

Well, frankly, we aren't that fun...

This is what I meant by a tubing adventures:

As in a TUBE for Jonah's suprapubic catheter.

Last week Thursday, 2-11, Jonah had his kidney stent removed and his catheter tube replaced. 

 

That catheter tube had been in place since 9-4-20.  These usually need to be replaced every 3-6 months.  

While we have had some catheter bag leakage issues, that original tube gave us no real problems over these past months.

However, the replacement tube from 2-11 came out after one week. 

 

Thursday night Jonah got the loop of the tube caught on a cabinet door and when he turned to walk away, the tube got yanked out.  Ouch is an understandment.  Poor boy!

When we called the urology resident on call, we were told to head to the ER immediately because the hole for the tube can close up with a few hours.  

Jonah is not ready to be without a catheter because he still isn't emptying his bladder sufficiently and safely on his own.

So in a rather impressive quick ER visit, Jonah had another more temporary catheter tube placed.  This new one is held in place by a water-filled balloon whereas the other one was held in place by a "pig tail" wire loop. 

Friday morning, Jonah woke up with his usual very full catheter bag (500+ccs) and when he got out of bed and walked around, the weight of the bag pulled the less-than-12-hour-old catheter tube out.  Urology also wonders if the tube was defective for it to pull out so easily.

Back to Children's Hospital to have the tube replaced again.  Same type of tube as Thursday night but with an added securement device to hold it in place better.  

Life with Jonah is never lacking adventure!

Now here's hoping his voiding numbers can improve.  His first two days he was peeing about the same amount as we were draining which was promising.  However, the past few days, he is peeing way less than we are draining.  This is not good if we want to be done with the catheter as soon as possible.

Over the weekend, I talked with a therapist about help with potty training.  She is setting that paperwork into motion and is hoping to do an intake visit this coming weekend.  I am relieved to know I might be able to get some help and expertise in helping Jonah learn how to void sufficiently and safely.