HOPING FOR MORE IMPROVEMENT

 

Jonah's 3 month urology follow-up appointment did not go as we hoped.  Jonah's kidney is about the same size it was at the 4-23-21 ultrasound in the ER. Meaning still too big 😔 

Today's ultrasound of the bladder showed Jonah is still not voiding as efficiently as he should.  

Some new techniques to try and get him to pee more.  Return in 3 months for another ultrasound.

Trying to think positive- at least things didn't get worse...

SO MANY QUESTIONS

 

Jonah has been diagnosed 

with Lyme's disease. 

 

So many questions come to mind:

1. Can't this poor kid ever catch a break?  He just keeps getting "things" that make him feel lousy.

2. Where/How did he get this?  Yes we do go camping, but we are very careful about checking the boys every night before bed for ticks.  On 6-15, I did pull a tick off of Jonah, but doctors are telling me that probably wasn't the tick that caused this if we pulled it off easily.  I do remember I had to give a slight tug to remove it, but there didn't appear to be any bite on him at the time.  So this probably means we missed a tick on him which led to this.  This is frustrating and scary to me because we were trying to be so careful and diligent.  

3. Will this just be a straightforward case of treating with 21 day antibiotics and that's the end of it?  The doctors seem to think there will be no lingering issues since they feel it was diagnosed in the early stage.  I'm praying there are no long-term issues for Jonah- as I said above, this kid needs to catch a break.

Just a point of interest:  When I brought Jonah in on 6-28 for his 2nd urine culture, I did mention to that 2nd doctor that I had pulled a tick off of Jonah on 6-16.  To me, the timing lined up with this possibly being Lymes along with the symptoms of fever, headache, and vomiting.  The doctor dismissed my suggestion of testing for Lymes (and it may have been too early for accuracy in all reality).

Then when the bulls-eye rash appeared on 7-9, we returned to the original doctor from 6-24.  This time I strongly communicated my suspicions of Lyme's disease because of this rash and the symptom of neck pain that had developed since 6-28.  This 1st doctor agreed with my suspicions and ordered the Lyme's test.  She also proactively started Jonah on the 21 day antibiotics used for Lymes.

A few days later the 2nd doctor called to check up on Jonah and made the comment to me that this was a great catch by doctor #1 to suspect and test for Lymes.  WHAT?  I think Dr. Mom was the one to first put that idea in motion!  

Oh well, I kept my mouth shut and didn't defend myself.  Like I said, testing for Lymes back on 6-28 might have caused an unreliable test result because it was too early.  So in the end, it all worked out and the Lymes disease got treated in the early stage which is what is most important.  

It's just interesting to me, how much I can continue to doubt my "Dr. Mom" instincts even after all the rodeos little Jonah has been through.  I just knew something wasn't right when Jonah was so strongly complaining of head and neck pain.  Jonah has a high pain tolerance so for him to complain of anything hurting means it must really hurt!  Also in 10 plus years, Jonah has never mentioned his head or neck hurting so I knew this wasn't just a common complaint of his.  And finally, Jonah has a hard time staying on task for most things so the idea of him being able to fake/pretend/exaggerate head and neck pain for over 2 weeks is very unlikely.  There is no way he would remember to keep pretending that long.    

Hopefully, we can get this Lymes disease cleared up along with Jonah's left kidney getting back to normal, and then Jonah can be done with anything medical for a long time!

That is my prayer!

NO MORE?

CATHETER!  

Jonah had his catheter removed today!  After 9 months of dealing with it, we are done.  

Praise the Lord!

This means Jonah can swim this summer- relief!

This also means we are going to have to be very diligent about making sure he pees enough on his own. We don’t want this to ever happen again.

The doctor wants us to keep a strict 2 hour schedule and continuing using the Flomax med and preventative antibiotic for the next 3 months.  A renal ultrasound and follow up appointment are set for 9-7.

We are very proud of how hard Jonah has worked these past months to learn how to pee more efficiently.

Oddly enough despite how excited he was at home about the appointment, Jonah was crabby during today’s appointment so it wasn’t the most pleasant visit.  That's why he doesn't look real excited in the photo.

Oh well, he’s happy now, and the tube is out.  

Prayers answered!

GOOD NEWS!

 

After 9 months of ups and downs, this morning we got the news from Jonah's urologist that he will remove the catheter on May 25th!!!!  One week away!

And even better, removal of catheter can just happen in the office.  No need to sedated.

We are so excited and happy for Jonah!  These past 9 months have not been easy on him.  He has endured a lot of pain and discomfort and inconvenience.  Yet for the most part, he has handled it with a smile and sense of humor.  

We are so proud of him for all his work learning how to pee efficiently!  We are very greatful for the Flomax medicine since that seemed to be the game changer for Jonah.  Flomax helps relaxes his pee muscles, and we think that has made all the difference.

We know going forward Jonah will have to be watched closely by us and his urologist to make sure he is continuing to void efficiently and safely and to monitor that left kidney.  But getting rid of the catheter is a major step forward, and a step that at times seemed like it was never going to happen.

We are grateful for the wonderful care and concern that Jonah's urologist has shown him over these 9 months and for Jonah's pediatrician who has pitched in and helped with urine cultures etc.  Jonah has a great team to support him.  

We are so excited for 5-25!

To celebrate, a little urology humor!

SPRING UPDATE: SCHOOL, BEHAVIORS, HEALTH, AND ADOPTION STORIES

 

BEN:

Doing GREAT in school.  Almost every day we receive a note from his teacher complimenting Ben for his hard work and determination to learn.  Ben is improving in his handwriting, math, and reading skills.  We are so proud of Ben.  Ben loves a good challenge so if something is difficult for him, that motivates him to conquer it!  I think this kid is destined to great things in life.

A few struggles we are having with Ben as of late: I think the green eyed monster of jealously has been hitting Ben.  With all of Jonah's health issues, I think Ben is trying to command a little more attention for himself.  Unfortunately he doesn't care if that is positive or negative attention so he does whatever he cn to get us to notice him: defiance and trying to control everything (bossing people around, trying to discipline Jonah, TV remotes, turning on lights/fans throughout the house, trying to "cook" in the kitchen, trying to work appliances etc).  He's requiring a lot of surveillance these past 2 weeks and a little bit more patience on our part than usual.

JONAH:
Doing GREAT with peeing on his own.  Doctor is very hopeful once this infection clears up, we will be very close to removing the catheter!  

Our schedule is VERY busy with all appointments to keep Jonah healthy: labwork, physical therapy, behavioral therapy, urine cultures etc.  

Also Ben has a few appointments to thrown in the mix too, so we are hopping!

Having some really good days in school, and having some days where he struggles with attending.  

Jonah's sweetness has really amped up these past couple of weeks.  He is very polite and cuddly and just overall happy to hang out with us.  

BOTH BOYS:

We decided to tell the boys their adoption stories.  We have always referred to them being adopted, but we have never sat them down and fully explained what that meant.  

I remember a few years ago I was talking to another adoptive mom of boys with Down syndrome.  She told me that both her boys knew all about their adoptions.  At the time, I knew our boys were not at a point that they would understand if we told them.  Her boys were a few years older than ours.

So here we are 2 years later, and we decided our boys were ready.  

What really initiated this was the boys' teacher this school year was pregnant.  So the whole  "baby in the tummy" became quite the topic at our house, with our boys trying to associate that they were once babies in my tummy.  I didn't want to lie to them so we decided it was time to explain.  

The other thing that I became aware of over these past few months is that with all our doctor appointments because of Jonah's kidney issue, I quite often have to refer to him being adopted during the medical history part of the exam.  Jonah listens to EVERYTHING that is said so he was hearing this reference about adoption.  It wasn't fair of us to be telling strangers about them without them knowing what adoption meant.

So I made a social story book about their stories.  We even included photos of their birth parents.  We prayed over the book and over our boys before presenting it to them.  

As I read the book, Jonah only focused on Ben's story.  Ben kept focusing on my tummy and saying "Me baby."  Very interesting.  Then for the next hour after reading the book, both boys were VERY naughty.  I think they were processing what they had heard.

A few days later, Jonah wanted to show the book to Stephen over FaceTime.  He seemed very comfortable and proud of it.  Ben is not interested in it anymore.

Of course, I do recognize that some of the behavior I described above in Ben's section may also be a reaction to us telling him his adoption story.  Jonah's more intense affection I described above in his section may also be a reaction to his adoption.  When you have kiddos that can't completely express/communicate their thoughts/feelings, it's a guessing game to figure out what is reaction to what.  We do the best we can.  

That is all we are going to do with them for now.  They know where the book is if they want to look at it again.  We will continue to remind them how much we love them and that we are their family forever.

Did we open a can of worms that didn't need to opened?  I don't know, but it seemed like telling the truth was the best answer so that's what we did.

BAD BUT NOT SAD

 

In the middle of night last Thursday, Jonah started with kidney infection symptoms: severe back and side pain and nausea and vomiting.  We spent most of Friday in the ER so he could get IV fluids and antibiotics.  Over the weekend, we started oral antibiotics at home for a 10 day course.

Jonah is starting to feel better: 

less back pain and less nausea.  

So he was feeling very bad when infection first hit, now he is on mend, thank goodness!

While it is very hard to see your child is pain and discomfort when they are feeling bad, we are very grateful that the cause of this kidney infection appears to be catheter related.  Catheters are breeding grounds for bacteria so it is not unusual that an infection would happen.  

What we were worried about when we first noticed he was having symptoms was that he was retaining urine again.  This was the cause of his original kidney infection in  August 2020.  

You see, these past 2 weeks, we have been draining the catheter less often which is requiring Jonah to have to void efficiently and safely.  We thought he was giving us very good numbers, however, when he started to get sick, we were nervous this meant he was not handling voiding on his own.   This would have made us very sad because it might have indicated that Jonah would need a catheter long-term.  

But we are not sad because the doctor is very impressed with Jonah's voiding totals.  Also the renal ultrasound done in the ER shows the left kidney is smaller in size than it was in October so it's actually improving.  So the doctor thinks this kidney infection is just "bad luck" of getting bad bacteria in that catheter.  

Of course, the doctor is concerned about clearing up this infection as soon as possible.  That is why Jonah is on 2 antibiotics for 10 days.  His bacteria is a tough one to treat so we are hoping and praying this infection can be treated with this course of treatment.

Because in 10 days, if all is clear, the doctor said he thinks we are getting very close to removing the catheter!!!!!  Provided Jonah also continues to void good numbers once he starts again on Thursday.  The doctor wants Jonah to be on full drainage for a few days to help flush the kidneys/bladder of this infection.

So Jonah felt bad, but at least we are not sad.  We'll take 1 out of 2 at this point.  As long we are getting closer to Jonah being without a catheter- it's been there since 9-4-20.  It's time to COME OUT!

From the ER on Friday

Jonah started to perk up after getting fluids and antibiotics by IV

 

JONAH'S SEVERE VOIDING DYSFUNCTION DIAGNOSIS

 As I talk to physical therapists and have pysch consults for Jonah, I found I needed to put the history of Jonah's toilet training all in one place to make it easier for me to explain his situation.

JONAH'S SEVERE VOIDING DYSFUNCTION DIAGNOSIS

BACKGROUND INFORMATION

Before Jonah was born, he was diagnosed with a bladder/kidney defect (left kidney nephrosis) 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 follow ups have been great reports. After yearly checkups from 2012 thru 2016, since things were looking so good, our urologist said we didn't have to be seen for 5 years- 2021!

 

3 YEARS OLD (2013) TO SOMETIME IN 2018

 

We tried many methods of potty training.  We attended several seminars on potty draining a child with Down syndrome.  We read many books and articles about the same.  We even did 2 phone consults with an expert from Chicago, Alice Belgrade.  

None of this led to success.  Jonah would sometimes pee for us on demand, Jonah would sometimes initiate and pee on his own, but neither of these things were ever consistent.  And Jonah never kept his pull up dry during the day. 

 

Night-time pull ups were usually VERY wet in the morning. 

 

SOMETIME IN 2018 (Jonah 8 years old)

 

Jonah's special ed teacher offered to do a 3 day intensive toilet training  at school.  Her thought was to train Jonah in the setting he spends most of his time in and then hopefully he will transfer those skills to the home setting.

 

While she did not have total success as she hoped, she got Jonah the furthest he had ever been!  From age 8-10, Jonah would pee on demand, he would sometimes initiate, he would sometimes have a dry pull up for a 2-3 hour stretch during the day.   In regards to BMs, Jonah continued to make those in his in pull-up.  The teacher's focus during the 3 day intensive, was only on potty training.

 

 

SUMMER OF 2020

 

Since Jonah was peeing on demand and sometimes going BM in the toilet, our goal for the summer was going to get Jonah use to wearing underwear with a pad insert to protect against wetting.  At this point, Jonah was keeping most of his daytime pullups dry, with occasional drippage in between toileting.  We were excited about Jonah wearing underwear when he went back to school.

 

AUGUST 2020

 

We started to notice a very strong and bad odor to Jonah's pee. 

 

After 2 weeks, we took Jonah in for a urine culture to check for a bladder/UTI infection.  Both samples came back as contaminated, not a clean sample.  However, our pediatrician decided to focus on Jonah's constipation (which is always an issue for Jonah which is why he regularly uses Miralax), and see if that would help clear things up.  At this point Jonah was feeling good, not complaining of any pain, and was not running a fever.

Then on 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. 

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

After a ultrasound and x ray at Children's, we found out Jonah's left kidney is severely enlarged and severe enlargement on the right also.  In other words, we are back where we were when Jonah was born, if not worse because BOTH kidneys are enlarged L

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.   

 

 9-4-20

Surgery a success!  Stent placed in left ureter to help drain that kidney.  Dr  thinks the right kidney will adequately drain on his own.  Suprapubic catheter placed as a safety measure until we know Jonah is adequately voiding on his own. 

 

SEPTEMTER 2020 thru OCTOBER 2020

 

Jonah experiences a lot of pain and discomfort from the stent and catheter.  Jonah  gets frequent infections in the catheter.   

We even brought him to the Children's ER one night because he was running a low grade fever and vomiting and in so much pain.  They tested his urine, but said it's common to have bacteria from the catheter.  No antibiotic prescribed.  Jonah sent home still in pain and holding a barf bag for the ride home.  Very frustrating.  Apparently antibiotics are only prescribed with catheter bacteria when there is a fever.  Jonah's fever was low grade and only lasted an hour.  Not enough to warrant more aggressive treatment.

 

 

NOVEMBER 2020

 

Finally after 2 months of us trying to tell the doctor how miserable this little boy was, the doctor put him on a daily long-term low dose antibiotic to prevent anymore infections.  Jonah starts to feel much better!  He does continue to complain of pain from the stent, but not nearly as much as during September/October.   

 

Suprapubic catheters need to be replaced every 6 months so surgery  is scheduled for 12-17.  During this surgery, the doctor will also decide whether he can remove the stent if he feels the left kidney is adequately draining again on its own.

 

The original plan after 2 week recovery from 9-4 surgery was that we would begin cycling with Jonah.  This means the catheter would be closed for 2 hours, allowing Jonah's bladder to fill with urine.  Then every two hours we would open the catheter and see how much urine Jonah built up during that 2 hours.  If Jonah ever asked to pee, we would let him but during this first phase the goal was simply to have his bladder get use to holding urine again.  

The next phase was requiring Jonah to try and pee every 2 hours.  After his pee attempt, we would then open catheter to see if any pee left.  Then the 2 hour increment would stretch to 3 hours and then 4 hours. 

 

Because of Jonah's pain and constant infections during Sept/Oct, the doctor decided to not cycle Jonah and let the catheter be open and draining 24/7 until his 12-17 surgery. 

 

While this made life more comfortable for Jonah, it also put a huge delay in the process needed to get Jonah off the catheter.   

 

DECEMBER 2020

 

Andrew, Stephen, and I get COVID.  The boys and Lydia, thankfully, do not get it. 

 

However, the 12-17 surgery has to be delayed 6 weeks because of COVID in our household.  This is Children's policy. 

 

Doctor has us continue with 24/7 drainage until his rescheduled surgery on 2-11-21, thus another delay in the cycling process.

 

 

2-11-21

 

Stent is able to be removed!  Catheter tube replaced.  Now hopefully Jonah can start the cycling process.

 

FEBRUARY 2021

 

Jonah hardly pees on his own as we start cycling.  Not giving us much hope that he can be safe without the catheter.

 

MARCH 2021

 

Doctor offers us some ideas to help Jonah pee better:

1. Flomax medication to help relax peeing muscles

2. Targeted physical therapy to help strengthen Jonah's pelvic floor muscles

3. Psych consult to start addressing behavioral issues (bad habits) that might be contributing to his difficulty peeing. 

 

SO FAR IN APRIL 2021

 

The Flomax medication seems to be improving things for Jonah.  He is peeing more, and Dr. is impressed with his pee log numbers so far.

 

Physical therapy starts 4-23, and psych consult is 4-20.

 

Also on 4-7 Jonah had a spinal MRI to make sure he did not have a tethered spinal cord that may be causing loss of sensation to pee.  This MRI came back normal so that rules out a physical cause for his voiding dysfunction.

TO NOTE:
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?"

 

 

 

 

WE GOT A PLAN

When there's a problem I'm facing, I always feel better when I have some action steps to take to try to fix that problem.

Since Jonah's 2-11 stent removal surgery, I felt like we didn't have any action steps to try and fix the problem of getting rid of his catheter.

Today, Jonah had a urology appointment, and we got a plan!  We got some action steps!  

Unfortunately, there is a chance that none of these things might help Jonah, but at least we get to try something.  

Jonah suffers from severe voiding dysfunction.  For Jonah, this means he does not empty his bladder efficiently which causes urine to back up to his kidneys.  This is what caused his severe kidney dialation (hydronephrosis) in August which is why he needed a stent and catheter.

We do not know exactly why Jonah holds back urine.   The doctor is reasonably sure there is no physical problem that is causing Jonah to not empty his bladder efficiently.  This leaves a behavioral reason (learned behavior/bad habit that is hard to break) or a cognitive reason (can't completely understand how to coordinate release of urine).  Most likely, it is a combination of behavioral and cognitive.  

So Jonah is going to get the following help to try and help him learn to pee more efficiently and safely:

1. MRI of spine to rule out any neurological issues (nerve damage) that might be hindering is ability to void efficiently.  Dr. thinks there is a very low likelihood there is a neurological problem, but it is prudent for this to be checked.

2. Medication (Flomax) to help relax muscles for voiding

3. Targeted physical therapy focusing on pelvic floor muscles

4. Psychiatric help to work on behavioral issues regarding voiding

5. 2 hour voiding schedule

6. Check into possibility of sacral neuromodulation device implantation

sacral-neuromodulation/interstim-overview

As I said before, I like action steps.  They help me feel less helpless about a difficult situation.  

In particular, I am hoping and praying the medicine and the physical therapy help Jonah void efficiently and safely so that his suprapubic catheter can come out and not be a long-term necessity.

So let's go- literally!  

Just some "urology" humor there...

 

A PLEASANT SURPRISE!

 Yesterday, I called the pharmacy for a refill on Jonah's Flovent inhaler.  

This is a maintenance inhaler that Jonah has been on for many years because of his Reactive Airway Disease (similar to asthma).  

The pharmacy needed to contact Jonah's pulmonologist because there were no refills left on the inhaler.  This contact prompted Jonah's pulmonologist to contact me with this morning to see how Jonah was doing.

Pulmonology has been following Jonah since he was hospitalized for pneumonia at 7 months old.  As a result of that case of pneumonia or perhaps it was the cause of the pneumonia, Jonah has an area of atelectasis on one of his lungs 

(Atelectasis (at-uh-LEK-tuh-sis) is a complete or partial collapse of the entire lung or area (lobe) of the lung. It occurs when the tiny air sacs within the lung become deflated or filled with fluid).  

This is why Jonah has been closely followed by pulmonology over these past 10 years.

In Spring of 2020, his pulmonologist's plan was to take Jonah off of Flovent and see how he did for the summer and into the fall, with the hope that Jonah was now strong enough to get through a cold/flu season without this inhaler.

However, Covid happened so the doctor recommended staying on the Flovent during the pandemic and then check back Spring 2021 and see how things were going.

So this morning I shared with the doctor that Jonah has been very healthy this past year because he has been home so much.  I also shared that Jonah did not catch Covid in December despite the fact 3 of us in the house had it.  

His response surprised me!  He said that he thinks Jonah can go off the Flovent at this point and that any respiratory issues can now be handled by Jonah's amazing pediatrician.  

After 10 years- after many times we thought we'd be done but then Jonah would get a respiratory infection and it would set us back- we are done with pulmonology!  I can't believe it.  Just like that- our Jonah finally "passed the test".  

Of course, the doctor offered he would always be there if something came up that we needed his expertise, but he must feel confident enough in our Jonah to release him from his care.

That was a pleasant surprise!  

It's been quite a respiratory adventure!

FROM THIS:

Jonah at 7 months, hospitalized for pneumonia

TO THIS:

Jonah at 10 years old, 

hanging out with his big brother Stephen

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!