LEAVING THE NEST

 

In March 2020, as many families experienced, our 2 oldest kids ended up home from college because of the COVID-19 quarantine.  

This meant from March through June, we had all 5 of our kids under one roof.  

Just like old times.

I know that COVID-19 has caused serious harm and devastation to many, physically, emotionally, and financially.  I am not going to minimize that. 

However, one blessing of the quarantine for me as a mom, was knowing all our kids were safe at our home and just being able to enjoy our family like we use to be.

Then in June, our oldest left the "nest" to start her new grown up life up in the Twin Cities.  

Now this week, our 2nd oldest will be leaving the "nest" to start his junior year at college up near the Twin Cities.

I'm afraid my "mom" muscle has weakened over these past months.  I got use to having everyone around.  

When Abigail left in June, it felt just as hard as when she left for college as a freshman.  I am sure I will feel the same for Stephen as he heads out this week.  Like we are starting over getting use to having our older kids live lives off on their own.  

I am happy they are healthy and able to start finding their futures.  Of course, that is what I want for them.  

But it's also hard to get use to this new stage of our family life.  I felt like I was starting to hit my comfort zone before COVID-19, and now I think I am going to have to learn letting go all over again with our #1 and #2.

Then next fall, I will have to learn for the first time what it will be like to not have our 3rd child, Lydia live at home as she will go off to college in Fall 2021.

Maybe by the time the boys are old enough to have other living options, it wouldn't be as hard for me.

Oh, who am I kidding?  I think that's just part of being a mom.  The lesson of loving but letting go.

So next week, we will be back to a family of 5 in our house: Lydia as a senior in HS and the boys in 4th grade.  

I guess that still is a pretty full house...

SURGERY DONE, NOW WAIT AND SEE

This demonstrates Jonah’s stress level on the way to the hospital today.  Sweet dreams, sweet boy!

Getting prepped for surgery.  The last thing Jonah said before being wheeled into the OR was that he wanted a hamburger!  Again, this boy knows how not to stress!

Up on the floor after surgery.  We got one smile!  Jonah is tired and a little groggy, but he his breathing good so that is most important!  

Surgery was a success because a stent was placed and the suprapubic catheter was put in.  Now we wait and see if infection clears out and kidneys go back to normal size over the next weeks.  

Stent will probably be in place for 2-3 months.  Catheter might be 1-2 weeks or longer if Jonah continues to be an “inefficient voider”.  

How’s that for a label!?

Doctor isn’t actually sure how this kidney dialation happened.  He thinks it’s a combination of things that have been happening over time.  

One of those things is Jonah stopped emptying his bladder completely.  He may have done this because of “stress” over expectation to stay dry and/or because of a UTI that was causing him discomfort.  

One of the doctor’s theories is the more he held his urine, the bigger his bladder got, eventually pressing down on the opening from the bladder to Left ureter, causing the kidney to back up.  

The right kidney also has some significant dialation, but the left is more severe probably because of its past history of being dialated for Jonah’s first 12 months before surgery.  The doctor thinks the right kidney will come down on its own without the need for a stent.

When the doctor tried to place the stent today, he said there was a definite blockage in the bladder to Left ureter connection point that took a bit for him to be able to push thru.  But now the stent will keep things wide open so kidney can drain properly now and shrink back down to proper size.  

The catheter is in place to ensure Jonah completely voids or empties his bladder.  Whatever he doesn’t void on his own will come out through the catheter to prevent this from happening again.  

One big question is, however, how do we help Jonah void completely on his own so that this catheter isn’t necessary long term?  The doctor hinted this might be hard if Jonah is holding as a behavior issue versus holding because there was pain from an infection.  

The doctor seemed to indicate that piece of the puzzle is way down the road though.  First we have to get his kidneys, especially the left one, healthy again.  Then it will be checking kidney function to make sure they are working as they should.  Then if all those things check out, we will have to address what is going on in Jonah’s mind- which is always a very interesting place to explore...🤔

One step at a time.  

Right now, he is doing good post surgery which we are so relieved and thankful for!  Hopefully we all get some sleep tonight, and then tomorrow we can come home and start managing this catheter care on our own. 

FYI: Jonah’s RIGHT kidney is at stage 3 for hydronephrosis (dialation).

Jonah’s LEFT kidney is at stage 4 hydronephrosis. 

So very important both kidneys come back to regular size.  Hopefully stent/catheter gets us to that point!  

Click HERE for more info on hydronephrosis 

 

Heading home!

Suprapubic catheter 

A suprapubic catheter is a hollow flexible tube that is used to drain urine from the bladder. It is inserted into the bladder through a cut in the tummy, a few inches below the navel (tummy button).

An SPC usually stays inserted for four to eight weeks before it needs to be changed or removed. It may be removed sooner if your doctor believes that you're able to urinate on your own again.

FIRST DAY OF SCHOOL 2020/2021: THE WEIRD YEAR!

Lydia, Senior year

Ben, Fourth grade

Jonah, Fourth grade but virtual for now...

 

THIS IS MY SUPERHERO!

This little guy is a superhero to me!

He has faced many scary things in his life, and yet he just keeps laughing, smiling and 

having fun through it all.  

What a life lesson for all of us!

I have often said these boys of ours teach me life lessons all the time.

Our latest adventure with Jonah has been brewing for the past few weeks.

In early August, Jonah started to show symptoms of a urinary tract infection.  We took him in for a urine culture in mid August.  The test came back contaminated twice which made our pediatrician decide to deal with Jonah's problem of constipation first and see if that would clear up some of the UTI symptoms he was experiencing.  

Of course, mom guilt has to enter the picture at this point. Was I not insistent enough that something was wrong a few weeks ago?  Did I miss something or not explain things clearly enough to let the doctors know what was going on with Jonah?  Trying to work out that guilt as I process these past 24 hours...

However, 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?"

So for the past few weeks we have been dealing with on/off symptoms of a UTI with Jonah. At times, he would convince us that he definitely wasn't feel up to par, but then the next hour/or day, he would be absolutely fine.  

Then last 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.  See what I mean about Jonah doesn't follow the text book?

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

Background information: before Jonah was born, he was diagnosed with a bladder/kidney defect 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 followups have been great reports.

However, after a ultrasound and x ray yesterday at Children's, we found out Jonah's left kidney is enlarged and some enlargement on the right also.  In other words, we are back where we were presurgery when Jonah was under one year old.

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.   

 So for now school is off the table completely until Jonah recovers from this surgery and is done with the catheter.  

We are hoping the original surgery done at one year old will not have to be redone.  

Just waiting for more information before we know how to resolve this.

However, the miracle of Jonah is he went to the hospital yesterday smiling, he left the hospital smiling, he went to bed last night smiling, and he woke up this morning smiling!  Nothing gets this kid down.  He knows and trusts that he is loved and cared for,  and that life is good even when it's not.  

What an amazing person!  

That is why Jonah is my superhero!

MIRACLE ANNIVERSARY

 Yesterday we celebrated my parents’ 67th wedding anniversary.  

In today’s world, that is quite an accomplishment in itself.  

However, this anniversary celebration was full of miracles!  

In January 2019, my mom suffered a massive stroke. She lost the use of her left side and her swallowing ability.  

There were times during these past 18 months, we weren’t sure what her future would hold. 

Yet, last night she was able to be at this anniversary dinner and EATING the meal with us!  She moved backed to her house from the nursing home in June, and since then has graduated from puréed foods to regular food.  

Even after spending 2 nites in the hospital this past week because of experiencing a short seizure, she was still able to be at the party!

And all of these accomplishments are due to God’s love and grace and His strength helping my mom AND dad work so hard on her recovery this past year and half.

It was a beautiful celebration last night!  

Congratulations Mom and Dad, and thank you Lord for all your help getting to this point!  

HERE'S THE PLAN

 

School starts 9-1-20.  Next week.

Our school district is offering two options: 

5 full days or virtual.

Lydia will be attending 5 full days.

Because the boys have an IEP, we have been able to formulate our own plan for them.  

The boys will be attending school from 9-12 each day.  They will have lunch at home, no recess, and no art, gym, or music.  They will also not have any time in their 4th grade classrooms.

They will spend their 3 hours in the special ed room having teaching time with their special ed teacher as well as their occupational and speech therapy.  I will work in the afternoon on things the teacher sends home with them.

At any point, we can change this plan and start giving them more time and more inclusion at school.

We are choosing this plan for the following reasons:

1. Minimal amount of contact/interaction for the boys since social distancing is VERY hard for them;

2. The boys will be able to be taught new things by their teacher since I feel like I am better in the role of maintaining/reviewing skills;

3. The boys will be able to have their therapies again after a very LONG break-since March 2020!

I am still very nervous about sending them to school even for 3 hours/day.  The boys have basically been safe at home since March.  We have been very protective of them.  Now I am letting them go to school, and I wouldn't even be there to watch over them.  This is very hard for me.  I worry about them getting sick, but I also worry about them getting others sick.  I honestly don't know if this will be the plan until Tuesday, 9-1 at 9 a.m. when I actually have to drop them off at school and drive away.   

I hope we are doing the smart and safe thing for them.  It's just so hard to know what is the right thing to do in this very confusing time we are in right now.

FUN BUT FAST: SUMMER 2020!

 Stephen and his sidekicks made this 

film to showcase our summer.

If video doesn't appear, here is the YouTube link:

Click HERE for Summer Days video