Racing for Onyx’s Heart

06/09/2022

06/04/2022

OK my prayer warriors...
Onyx is in the Cardiac ICU with bradycardia. He was lethargic & not acting like himself - so I had his dad rush him to Shands! They started an epi drip & are doing an echocardiogram & blood work. His heart rate was 39... I need ALL of my prayer warriors to pray non stop 4 our baby boy. His birthday is in 8 days... 😢 😭 I will post updates as soon as I know anything!!

Lord please put your healing hands over my baby boy.

12/22/2020

Update on Onyx

So, he will be OFFICIALLY listed tomorrow on the transplant list. Yet again. His heart is too weak...we have had trouble with that heart ever since it was put in. It was rejecting before we ever even left the hospital the first time...
There are going to be more risks involved with the 2nd transplant, though. A 2nd transplant(usually) doesn't last as long as the 1st. (Granted, his first should have lasted him more than 7 months...) Not to mention..this time he will need a MORE SPECIFIC heart. So, even though he will be listed 1A (top of the list) the wait will probably be longer than last time. And we almost lost him last time while we were waiting...the heart LITERALLY came just in time. Now, as of this moment in time...he isn't doing terrible. On a scale of 1-10 he is an 8 right now. BUT...
The transplant coordinator also said that there is a VERY REAL possibility that his condition could decline so fast - that he would no longer be eligible for another transplant. Which at that point..they would send us home and involve Hospice.
Or we could decide to not put him through waiting again. I don't see that happening unless his condition deteriorates...I want my baby to have a fighting chance...I am NOT ready...I need him more than he needs me.

We will be living life DAY BY DAY with no guarantees of tomorrow... The uncertainty is the worst part...

PLEASE KEEP MY SON IN YOUR PRAYERS....
& Merry Christmas/Happy Holidays to everyone reading this.

P.S. As much as I don't want to..I will be making more fundraiser pages to help with our expenses while in the hospital(& even..God forbid if something happens..) I am not asking for anything. If you feel led to, then thank you so much. All that I am asking for.. are prayers.

God Bless,
-The Hebert Family

10/27/2020

Thank you everyone! For all of the love, support & prayers!! It means the world to me & my family right now. God Bless All of you!

*Update On Onyx* They tried to put in a PICC line to help get the rejection medicine in..and they tried 3x with no luck...so he is going to have to have his meds through a regular IV. His veins are just hardened and weak from all of the other picc lines in the past....he has slept most of the day(but that is because of the steroids he was on over the weekend. They make you irritable & tired...) I will post some pictures and update everyone a little better tomorrow; whenever i know more! God bless you all. Goodnight!
- Onyx's Mommy💚💜💚💜😘

10/26/2020

Update on Onyx

So i have some bad news..his biopsy finally came back. His heart doesnt look too bad, but apparently it is very inflammed and he is still in rejection even after the steroids that they ran on him all weekend. So they are moving us up to the 10th floor...to stat the next treatment for rejection. And that treatment takes at least 7 days to finish. So we are still going to be here for a while! Please pray for us....

04/21/2020

Onyx is going home!!!
God is good

WELL, we will be leaving soon, probably about an hour from now.🥰 THANK YOU everyone for all of the prayers. I am OVER THE MOON with happiness right now. I might be stressed out, BUT NOTHING and I mean NOTHING is ruining this day!

03/20/2020

💗UPDATE ON ONYX💗
He is officially eating from his bottle again, and they took his feeding tube out today!! And he is no longer being restrained to the bed.