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.

 

ALMOST TO THE FINISH LINE...hopefully!

Yesterday Jonah had his stent removed (yeah!) and catheter tube replaced.

This surgery was supposed to have happened on 12-17, but because we had COVID in our household, hospital policy required surgery to be postponed 6 weeks.

The doctor wasn't sure if stent would have to be replaced, but because the x ray yesterday showed good drainage from the kidney without the stent, the doctor chose to let Jonah go without it.  He is confident the kidney will drain safely on its own now.

This is great news both medically and from a comfort level for Jonah.  Jonah has non-verbally indicated to us often that having that stent in has been very uncomfortable for him these past few months.  The daily antibiotic since November has kept infection away which has also reduced his discomfort, but we are hoping no stent will help Jonah feel even better!

Now the tricky part happens.  

Because of Jonah's discomfort with the stent and his constant infections after his 1st surgery on 9-4, Jonah's catheter has been on 24/7 drainage.  This means that his bladder has not been full for months.  This means Jonah has not had to initiate any bathrooming for months.  

Now we have to start turning off the catheter and letting Jonah get use to what a full bladder feels like and what he needs to do about it.  We also have to help Jonah empty his bladder completely instead of holding some urine back which is what the doctor feels started this whole problem back this summer.

The doctor feels that Jonah started holding his urine (why and for how long we will never know...).  This caused both kidneys to enlarge.  The left kidney was more severe probably because of scar tissue from the original repair when Jonah was one years old.    Then an infection set in which is what finally alerted us to the problem back in August.  

Unfortunately we had no idea Jonah was holding his urine.  His output, between his pull up and what he would empty on his own, seemed fine to us.  That is the scary part.  

Which is why the catheter remains because the doctor does NOT want this to happen again.  He wants to be very sure Jonah is adequately voiding on his own before he removes the catheter.

So we are back to toilet training 101 in a week.  I am hoping and praying that because Jonah will be more comfortable without the stent, he will at least be willing to try and use the bathroom.  But I am unsure how to convince him to empty completely.  I'm am guessing his low muscle tone/cognitive delay is really making this a difficult issue for him.

For those reasons, I am seriously considering calling in an expert to help me help Jonah over this hurdle.   I've been given the name of an ABA therapist in the area who might be able to help with toilet training.

In the past, I have attended many potty-training seminars and read many books about training kiddos with DS.  I have even paid for phone consults with a potty training expert from Chicago.  I got great information, but Jonah never seemed to respond in the way the experts predicted he would.

Then a couple years ago, Jonah's incredible special ed teacher offered to do a 3 day intensive toilet training with Jonah at school.  She made the most progress with Jonah we have ever had!  

Since then, Jonah has never been 100% trained, but we at least could have him go on demand and keep his pull up mostly dry.  

Of course, now it's very discouraging to hear that even that success was questionable because Jonah wasn't adequately voiding which led to this serious kidney/bladder issue we've been dealing with since August.  

So I swallowed my pride a few years ago and admitted I need help and accepted the offer from his special ed teacher.  Looks like I need to eat more humble pie and admit that I am out of my paygrade on this one again.  I need help!

Of course, if next week surprises me and Jonah pees like a champ, then my worries can be put to rest.  But I have feeling that we are up for a challenge, and so I want to be prepared with a Plan B.

We want Jonah to be able to get rid of this catheter.  He wants the catheter gone.  

In an ideal situation, the doctor thinks the catheter could be removed in the next month if Jonah can prove to us that he adequately emptying his bladder.  

Jonah is unique and follows his own special little trajectory.  I'm not sure a month is realistic, but who knows?  I'm praying for a miracle here!  

Jonah after his dose of "goofy juice" 

before going back to the OR

Safe back home later yesterday afternoon.  

We didn't have to stay overnight which was nice!

 

THIS IS SORT OF HOW I FEEL

 

Due to COVID, since mid March 2020, both of the boys have been home with me every day all day.  

In September 2020, I had a small break for 3 weeks when Ben attended school in the mornings so I only had Jonah home as he recovered from his kidney/bladder surgery.

  

Then the last week of September, both boys attended school in the mornings.  However, they had a direct exposure at school causing them to be in quarantine for 14 days and then that precipitated us deciding to keep them both home full-time starting in October 2020.  

SO.....

Today is the first day I have to myself since March 2020!!!!!

The boys are going to be going to school all day on Tuesdays.  Jonah will come home at lunch for me to do catheter care, but then he will go back to finish the day.  The other days of the week, they will just be in school for the mornings.  But today is a full day to myself!  8:45-3:15.

I love the boys dearly.  I really enjoy doing school with them at home.  And I think the three of us (especially Ben and I) have really bonded over these past 10 months of togetherness.  Overall, it's been a great experience these past 10 months despite the difficulty of the pandemic.

But I am a bit excited to get some things done off my to-do list that have been put on hold for almost the past year because I've just been too occupied by boys to do them.  I'm excited to just do nothing for a few minutes today and RELAX! I'm excited to have a quiet house for a while today.  I'm excited to not multi-task for a few hours today and be able to concentrate on ONE thing only!  And it will be a relief to schedule appointments or run errands during these times on Tuesday and not have to ask older kids for help watching the boys.  

Last week was suppose to be my first free Tuesday, but we had a snowstorm.  

But today, nothing stopped the plan. The boys are at school, and I am free for a few hours!

I hope I don't come off sounding selfish.  

And for all I know, the boys will probably enjoy the break from me :)

So time to get stuff done- or nothing done.  Whatever, for a few hours today, the choice is mine!

FUN!!!!