Our Heartbreaking Journey

September 10, 2018  •  9 Comments

 

 



❤️ Our Heartbreaking Journey ❤️

 September 10, 2018


My heart is breaking for my sweet little man. Wednesday, August 29, 2018, my Husband & I learned that our son's heart is failing him.   The doctors are still trying to figure out how & why.  As I sit here in  the Intensive Care Unit, my heart continues to break for my son.  We've been here since August 29, 2018 and will continue to be here until his heart can function enough to go home.  As of today, we have no idea when that will be.

How we got here:  Early July 2018, my son became sick (or so we thought) with cold symptoms.  Runny nose, sore throat, a cough and stomach pains.   We had just moved to Missouri in May.  It is said that a cold can last 2-4 weeks.  He refused any and all cold medicines.  Tylenol was all he would take.  I was able to sneak some Mucinex in his Tylenol, which helped relieve some of the cough, but not all.  5 weeks in, he was still having symptoms and they weren't letting up.  It seemed odd that there was no fever what so ever.  Not having a primary care provider just yet, I was able to get him into Urgent Care to take a look at his symptoms.  Sadly, the urgent care provider didn't run any tests.  No X-Ray. No Strep test.  Nothing.  The urgent care provider just took his vitals and assumed allergies.  We did just move here, so I can see why it was assumed allergies.  My son was prescribed Zyrtec and off we went.  A few days into taking Zyrtec, he had no relief. My thoughts as a mom were "maybe Zyrtec isn't the right medication for him".  I ran to the nearest pharmacy and got him some Benadryl.  A few days later, still no relief.  Poor guy was miserable.  He would rarely leave his bed.  I was able to get him into a more well-known doctor that many families favored in our area.  The days leading up to his appointment had me worried even more.  His skin became pale and he was becoming weaker by the day.  After every coughing fit, his lips would turn blue.   What was happening to my little boy?  The night before his appointment, I cried for hours.  I was worried his so called "allergies" were actually something far worse.  It was just this horrible gut feeling in me that kept telling me something was really wrong.  On August 29, 2018, we went in for his appointment.  By the time we had checked in, his skin was even more pale than before and his lips were blue.  He could hardly walk without stumbling.  Thankfully, this doctor didn't hesitate to pull out all the stops and run every test possible.  Strep & Pneumonia came back negative.  But his X-Ray did show his heart was enlarged.  Since most children don't hold perfectly still (or know how to hold their breath well) for X-Rays, the doctor wanted to make sure her concerns were valid.  She sought a second opinion from a fellow colleague at one of the major hospitals in the area.   Within minutes, her concerns were confirmed.  We were immediately transported by ambulance to the Emergency Department.  It was there, I learned that my sweet little boy was in heart failure and we were, immediately, transferred to the main hospital and admitted to their Intensive Care Unit.  I was immediately overcome with a ton of emotions and questions.  How could this happen?   He's just a little boy.  He's only 8 years old.  How does he have heart failure at such a young age?  His heart rate was incredibly high and his other numbers were just all over the place.   His heart is swollen and the walls of it are thinned.  He had some small pieces of his heart that were damaged and causing his heart to race 24/7.  He's had two procedures so far.  Each procedure was to examine and clear the tissues causing his high heart rate.  The surgeons were able to rid the pieces of his heart that were causing the high heart rate (Cardiac Ablation), but his heart is still too weak to function on its own because of the swelling and the thinned walls.  They were able to slow his heart failure down, but not eliminate it.  Saturday, September 8, 2018, his heart went into cardiac arrest.  
It was the scariest 5 minutes of my life.  Thankfully, they were able to save him.  So here we sit, in Intensive Care, patiently waiting for his heart to heal well enough to manage with medications.


On August 29, 2018, I became a "Heart Mom" and our journey is just beginning. 


{Our sweet little man.  We love you, Riley.}

 

❤️ Will post updates to this blog as we receive them.  Thoughts, well wishes and prayers are gratefully welcomed. ❤️

XOXO,
                    Jennifer

 

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


❤️ Our Heartbreaking Journey Continues ❤️

September 20, 2018
 

First off, hello.  Thank you all so much for thoughts, prayers and kind comments.  The amount of gratitude I have for you all is immeasurable.
This has definitely been a very trying journey and we're still in the beginning.  Before I share this update, I'll share more on his condition with you.  He was diagnosed with two heart conditions.  Dilated Cardiomyopathy (swollen/enlarged heart with thinned walls-heart muscles become too weak to pump blood as well as it should)  and Ectopic Atrial Tachycardia (a rare arrhythmia that impulses a constant high heart rate).  His heart was constantly racing at 200 bpm for who knows how long.  Doctors said he's had it for a very long time.  Imagine, if you will, you're running on a treadmill and your heart rate gets up to a good 144-160 (normal exercise rate in healthy people-some people can get higher depending on their age).  Your heart is racing, you're thirsty and your body begins to get tired and you stop.  Your heart rate begins to go back to normal (60-100 bpm, sometimes 40 bpm).  His heart was constant running at 200 bpm and wasn't stopping.  It could never return to normal on its own.  The two procedures (Cardiac Ablation) he had were able to fix this.  Though his EAT (Ectopic Atrial Tachycardia) is better, his heart is still in failure and has a very long road to recovery.
Which brings us to the update.  Sadly, this update comes with both good news and bad news.  Good News:  We have finally moved out of ICU and into a regular room here at the hospital.  He is taking the oral meds very well and they're hoping to send him home within the next week or so.  On to the bad news:  Sadly, these are lifelong conditions for him that can come back again and again throughout his life.   Although his heart is on the road to recovery, it may take months to years for his heart to regain it's full function; and his ectopic atrial tachycardia (E.A.T.) can return at any point.  In order to be discharged from Hospital care, he will have to wear a Life Vest.  It's pretty much a heart monitor (much like a Holter Monitor) with a built in AED (a devices that checks the heart's rhythm and delivers a shock if needed) if his heart should stop.  There's no telling how long he will have to wear it.  It will depend on how long it will take for his heart to strengthen and regain it's function again.  It could be months, even years if needed.  Sadly, his condition will prevent him from doing certain things life.  He won't be able to participate in sports or do any strenuous exercises.  Light exercising (like walking) will be ok, but he can't overexert himself what so ever.   There other things in life he may never be able to do, but I'm holding on to hope that his heart will recover well and return to normal.  Your continued thoughts, good vibes, prayers would be greatly appreciated.  This new journey has been a crazy rollercoaster of emotions and we're hoping he gets better.


❤️
Will post more updates to this blog as we receive them.  Thoughts, well wishes and prayers are gratefully welcomed. ❤️


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

❤️ Our Heartbreaking Journey Continues ❤️

September 26, 2018
 

Hello again.  Thank you all, again, for your continued thoughts, prayers and kind comments.  They mean so much to us.  We're hoping that things can only go up from here.  This up date comes with some good news.  We were, finally, discharged from the hospital on September 24th and our son is home.  He is managing his medications perfectly!  It's a little scary knowing he still needs a Life Vest, because of the increased risk of another cardiac arrest; but we're relieved that his heart is protected better with it on.  Our son will continue to see a cardiologist every week for as long as needed.  He has an incredibly long list of medications he has to take twice a day (morning & night).


{What it takes to keep his heart going, every day. Taken twice a day.}


So far, he is settling in nicely and is happy to be home.  We are so blessed and happy to have him home.  Our family feels complete again.  Sadly, there's still a long road ahead.  We're hoping it can only get better.  Thank you again for your continued thoughts, good vibes, prayers, and kind comments.  A huge Thank You to the Doctors & Nurses for being amazing and saving our son's life!  Our son is in very good hands.  We even did some research and discovered that he was staying in one of the best ranked hospitals in the US.  The entire hospital staff is amazing!  So kind, caring and accommodating in every way.  We're beyond blessed that our son has the best care possible.

❤️ Will post more updates to this blog as we receive them.  Thoughts, well wishes and prayers are gratefully welcomed. ❤️
 

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


❤️ Our Heartbreaking Journey Still Continues ❤️

October 15, 2018
 

Hello everyone.  Thank you all, again, for your continued thoughts, prayers and kind comments.  They mean so much to us.  Sadly, this update comes with no news.  But no news doesn't mean it's bad news.  He went for a check up to see how his heart is healing.  Sadly, no improvements yet.  But they said it will take time and it may take a long time.  He is still wearing a Life Vest (Monitor with AED) and will continue to do so until his heart heals.   Thankfully, he is managing all of this very well.  The beginning was scary, as all beginnings are, but he is in a much better place than where he started.  I'm so beyond thankful for the hospital staff for continuing to be amazing at what they do.  I don't know where we would be without the care they have provided for him.  We are beyond blessed he's home with us.  I wish there was more good news to share.

❤️ Will post more updates to this blog as we receive them.  Thoughts, well wishes and prayers are gratefully welcomed. ❤️
 

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


❤️ Our Heartbreaking Journey Still Continues ❤️

November 21, 2018

Hello everyone.  Thank you all, again, for your continued thoughts, prayers and kind comments.  As always, they mean so much to us.  This is a tough update for me to write.  I wish I had some good news to share, but sadly, I do not.  Our sweet Riley went in for a checkup on his heart rhythm, yesterday.  His heart function has improved, but sadly his Ectopic Atrial Tachycardia has returned.   They started him on a beta blocker to see if it can control his heart rate and bring it back down.  We return on Tuesday, November 27th, to see if it is working.  If it works, it will just be adjusting the dose and it will be a short appointment.  However, if it doesn't, we will be staying the hospital again for another oblation.   Please pray that the beta blockers will work to help get his heart under control.  I know we will be. 

❤️ Will post more updates to this blog as we receive them.  Thoughts, well wishes and prayers are gratefully welcomed. ❤️
 

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


❤️ Heart Journey Still Continues ❤️

January 9, 2019


Hi Everyone!  Happy 2019!  Again, thank you all so much for your continued thoughts, prayers and kind comments.  They are truly appreciated.  Our sweet little man had his check up with the Heart Failure Team and received some good news.  His heart's function is improving!  He still needs help with the squeeze and still needs to be on meds, but there is improvement.  He is still wearing his life vest (vest with built in AED), and will continue to do so until further notice.  The beta blockers are helping with his high heart rate, but we don't know for sure how well.  That is a different appointment with the Heart Rhythm Team and we'll know more when that one comes.  

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

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

 


❤️ Heart Journey Still Continues ❤️

April 2, 2019

Hi Everyone!  Happy 2019!  Again, thank you all so much for your continued thoughts, prayers and kind comments.  They are truly appreciated.  Our sweet little man had his check up with the Heart Rhythm Team and received the best news.  His heart's function is back to normal and the life vest has come off!   He's no longer in the danger zone and his heart is recovering well!  He will still have to be on meds and have to do 24 hour holter monitor tests here & there; but he's no longer wearing an AED which is such a relief.  When I asked the doctors if we're good and I have nothing to be scared of anymore, they responded with "he'll grow up to be an adult, that's pretty scary".  😂  How awesome is that?!  Granted, there's always a chance it could come back, but I'm going to hold on to the fact that he is doing well!

………..To Be Continued...….


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



❤️ Heart Journey finally has a light at the end of the tunnel ❤️

May 21, 2020

Hello Everyone!  Thank you all for your continued thoughts, prayers and kind words.  They have been so helpful and have helped us keep our spirits up.  I'm happy to post that, after a year of monitoring, our little man has made a full recovery from heart failure.   We have been, officially, discharged from the heart failure team and his heart is strong again!  We are still in with the Heart Rhythm Team as they will continue to monitor his rate & rhythm.  We see them in June to see how they want to move forward.  But we are relieved and happy for our sweet little man to have a healthy heart again.  It was, indeed, the scariest of times for us all.  We can only hope his continues to stay strong for years to come.  Will continue to update you all on how things are going.  Thank you again for your continued support! 

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

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

 


Comments

Deborah Bulick(non-registered)
Jennifer, I'm so sorry to hear of your son's illness. Praying for his and your complete healing. If you need anything, please let Ed and I know. ❤️❤️
Tammie Miller(non-registered)
Been Praying all along... Prayers continue daily for the whole family.
Christina McCoy(non-registered)
Praying hard for you all.
Christie(non-registered)
Awe, Jennifer what a tough journey. Praying for you and your sweet boy.
Schona K(non-registered)
So very sorry to hear all of this. I am sure it has been both emotionally and physically draining for all of you. Big hugs to you! Will watch for updates.
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