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...

 

3-2-1 GO!

World Down Syndrome Day (WDSD) , 21 March, is a global awareness day which has been officially observed by the United Nations since 2012.

The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

Make Aware...Advocate...but mostly CELEBRATE!

These two boys bring enormous joy and happiness to our family!

They are worth fighting for and doing whatever we can to help them reach their fullest potential.

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

PREPARING FOR EASTER

 As we have in other years, we are preparing for Easter as a family by using the Resurrection Eggs.  

If you don't have these for your family, I highly recommend them!  They are a very good way for children to learn the story of Easter.  

Amazon link to Resurrection-Eggs

For me personally preparing for Easter, I'm not doing a specific Lenten devotion.  But I have had some devotions lately that have really focused on God's love and mercy being shown to us because of the death and resurrection of Jesus Christ.  

During Lent this year, I really want to focus on this amazing gift of love.  

I am a sinner SAVED BY GRACE, not by who I am or what I have done, but by WHO JESUS IS AND WHAT HE HAS DONE!

I thought this song really captured that thought:

YouTube link to "Yet Not I But Through Christ in Me"

LYRICS:

Yet Not I but Through Christ in Me

CityAlight

What gift of grace is Jesus my redeemer

There is no more for heaven now to give

He is my joy, my righteousness, and freedom

My steadfast love, my deep and boundless peace

To this I hold, my hope is only Jesus

For my life is wholly bound to His

Oh how strange and divine, I can sing: all is mine

Yet not I, but through Christ in me

The night is dark but I am not forsaken

For by my side, the Saviour He will stay

I labour on in weakness and rejoicing

For in my need, His power is displayed

To this I hold, my Shepherd will defend me

Through the deepest valley He will lead

Oh the night has been won, and I shall overcome

Yet not I, but through Christ in me

No fate I dread, I know I am forgiven

The future sure, the price it has been paid

For Jesus bled and suffered for my pardon

And He was raised to overthrow the grave

To this I hold, my sin has been defeated

Jesus now and ever is my plea

Oh the chains are released, I can sing: I am free

Yet not I, but through Christ in me

With every breath I long to follow Jesus

For He has said that He will bring me home

And day by day I know He will renew me

Until I stand with joy before the throne

To this I hold, my hope is only Jesus

All the glory evermore to Him

When the race is complete, still my lips shall repeat

Yet not I, but through Christ in me

To this I hold, my hope is only Jesus

All the glory evermore to Him

When the race is complete, still my lips shall repeat

Yet not I, but through Christ in me

When the race is complete, still my lips shall repeat

Yet not I, but through Christ in me

Yet not I, but through Christ in me

Yet not I, but through Christ in me

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!!!!