OUR HEART BREAKING JOURNEY BEGINS AGAIN

September 01, 2021  •  Leave a Comment

❤️ Our Heart Breaking Journey Begins Again ❤️


September 2, 2021

Hey there everyone!  I wish I had more good news to share, but sadly here we are again.  In all honesty, I was actually hoping I'd never have to return to this blog.  It was a nice year and a half of bliss just watching my son enjoy life and continue to grow into the amazing little man that he is.  His appointments had become so far and few that there wasn't a need to think it would return again this soon.  But... here we are.  On August 31, 2021, I woke my son up to get ready to go to his routine heart rhythm/rate checkup.  The rain had just stopped as we got into the car to drive an hour to Kansas for his appointment.  I had given him his morning dose of meds and prepared him his favorite breakfast to enjoy on the car ride there. Once we got all checked in, it was the same tests we do at every appointment; an EKG (wires & stickers for a 30 second reading of his heart rhythm) and an ECHO (ultrasound of the heart to see how his heart is looking and functioning).  During an ECHO, they can measure the thickness of the walls of his heart are, how strong the pumping/squeezing of the chambers is, see how the blood flows through the heart and how fast the heart chambers open and close.  Watching his echo and seeing his rate be in the 160s was definitely a little odd, but I was hoping that was something that could be fixed with just a change of dosage or maybe a new med.  But what I didn't see coming was the results of how his heart was handling his heart rate.  Who really sees that coming though?

As we waited patiently in his room for the doctors to return, my son and I realized it was taking them much longer than usual to come talk to us.  My hope, of course, was maybe just a discussion of a better medication for his heart rate.  When they returned and started telling me they were going to have to admit my son into ICU again, I fell into total heartbreak & shock at the same time.  My response was "what?".  They continued to inform me that his heart was becoming weak again and his rhythm was no longer normal.  His heart was functioning at 33% which is below normal (normal range is 50%-70%).  75% being really healthy and 50% being previously damaged from heart attacks or other factors).   Being below the normal range puts him at risk for Sudden Cardiac Arrest (SCA).  Anything below 50% is considered heart failure and requires immediate intensive care.

After being informed of what had to happen next, I was asked if they could tell him the news or if it would be better coming from me.  If anyone knows my son, it was best that it came from me.  I can't tell the emotions I was feeling as I told my son that we had to return to the hospital to stay awhile.  I was still in shock and trying my hardest not to break down in tears so he wouldn't worry for the worst.  The news, as expected, was not handled well.  But for the daily challenges he faces (he has Sensory Processing Disorder-I'll get into that another time.  Just know it makes him have really extreme emotions that he can't process the same way as a non-sensory processing disorder person can.  He needs help regulating himself and processing his emotions), he handled it better than I thought he would.  Thankfully, this time, I was able to drive him straight to one of the best children's hospitals in the US.  The very same hospital that saved him and helped him through the first round in 2018.

He was admitted on August 31, 2021.  Almost 3 years to the day of admission in 2018.  How crazy is that?
We are currently on night 2 of his ICU stay and there's no improvement yet.  We have tried 2 meds so far and nothing is working.  Tomorrow morning, we start a more powerful med (a last resort med as it's not meant for long term use).  If that still doesn't help him, we are in for another long & bumpy road of surgeries, life vests and lots of medications again.  We can only hope that this process will be much quicker than the last and that his heart recovers fast.


 

❤️ As always, will post more updates to this blog as we receive them.  Your thoughts, well wishes and prayers are gratefully welcomed and appreciated.❤️
 

...............To Be Continued..........

To read more information on how heart function is measured, visit: The American Heart Association


To see when this all began in 2018, visit: Our Heart Breaking Journey Blog Post 
 

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

 

September 4, 2021

My son's heart condition is diagnosed as EAT. Which is Ectopic Atrial Tachycardia.  A condition in which one of the upper chambers of the heart discharges extra electrical impulses telling the heart to beat more than it should.   During atrial tachycardia, an electrical impulse outside the sinus node fires repeatedly, often due to a short circuit — a circular electrical pathway.  Electricity circles the atria again and again, causing the upper chambers to contract more than 100 times per minute. (A normal heart rate is between 60 and 100 beats per minute.).  The rapid heart contractions prevent the chambers from filling completely between beats.  This causes major strain on the heart's strength of the squeeze (function).  If left untreated, it will weaken the heart and cause it to fail.  This is how we ended up here in 2018.  There were no signs he had this condition until he went into heart failure.  Same as this time.  He had no physical signs that this was happening.  It was only discovered on his routine EKG at the clinic on August 31st, which brought us here to the hospital.   And what has been really hard to understand is how it keeps returning.  The doctors have decided to dig deeper into his condition and will DNA testing soon.  Wish us luck!

❤️ Of course, I will post more updates to this blog as we receive them.  Your thoughts, well wishes and prayers are gratefully welcomed and appreciated.❤️

 

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

 

September 5, 2021

 

These last few days has been a bit rough.  There was no change, no improvement, nothing.  Today we got some good news.  The more powerful, last resort, med is working to an extent.  The rate is under control, now it's the rhythm that still needs some work.  They're hoping after a few days of this new med, things will start to level out.  Today, we are getting out of ICU and moving into a regular room.  Can't tell you how amazing that is!  ICU is a scary place for us.  It means things are critical and can go either way.  But today, we are getting out of ICU!  We still have the next two days to get through before they will check on his heart function. Hoping to see some improvement on Tuesday.

❤️ As always, thank you for your continued thoughts, prayers and well wishes are greatly appreciated. Can't thank you all enough. ❤️

More updates to come.....

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
 

September 7, 2021

 

Good news!  His heart function is back to 50%!  The meds are controlling the rate well enough to help his heart heal.  They're still working on the dosage amounts and timing of the meds to find what will work from here on out.  His rhythm isn't 100% better, but it's getting there.  For now, all things look good enough to possibly get us home by the end of the week.  Sadly, one of his meds is not meant to be taken long term, so there is talk of possibly returning in the near future for an oblation surgery.  An oblation is a procedure which freezes or burns the extra electrical node in his heart that is causing the extra beats and fast rate.  Not entirely sure when that will take place, we will learn more later this week.
 

❤️ Of course, I will post more updates to this blog as we receive them.  Your thoughts, well wishes and prayers are gratefully welcomed and appreciated.❤️

 

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

 

September 8, 2021

 

Oh my goodness!  I've posted it on Facebook & Instagram.  And now I must post it here.  My husband works with the absolute best at his work! 
Got these beauties today! 
Thank you so much for thinking of our family, DC 14 2nd Shift Management Team.  These are gorgeous & very thoughtful.  Your kindness & support means the world to us.  Thank you again!  Not much to report today.  Doctors are still monitoring how his heart handles the meds.  Will know more tomorrow, hopefully.
Stay tuned.......


❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
 

September 9, 2021

 

Today is a day of good news!  The meds are doing their job and we're able to go home tonight.  Sadly, we're not completely out of the woods just yet as there is still talks of a surgery in the future.  But we get to go home.  He will still be on meds and will have to wear an event monitor for the next 30 days to record any abnormal rhythms he will continue to have.  He will return to the clinic in 4-6 weeks to follow up with his hospital stay and talk about what to do next.
Thank you all so much for your continued thoughts, prayers & well wishes.  This has truly been a rough journey and it may continue to be.  We really have the best people in our lives.  Thank you again!


❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
 

 

 


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