Thank you all so much for your prayers last night as we had to call 911 for Jonah. As the paramedics arrived and they did the EKG, you could tell they were somewhat dumbfounded by what they saw. Jonah’s case is very rare and his EKG looks like an “old person’s EKG”. Not something you would see in a 13 y/o athletic boy.
He came downstairs a little after 10 p.m. and was as white as a ghost. He said he was short of breath and having severe chest pains – a 10/10. We called 911 and text Dr. Suarez. This is something we don’t want to mess around with. There is little research on Jonah’s condition, so we don’t want to take any chances. He is only the 6th in the world with this condition.
Jonah is in junctional rhythm ,which means the upper chamber of his heart is not “firing” properly – the electrical part. This is one thing they were concerned about when they patched his right atrium. Dr. Si, the surgeon, had told us, that it was possible that Jonah would need a dual chamber pacemaker if this happened.
As I was sitting beside him in the back of the ambulance, I just realized that this is our NEW “normal”. That what life once was, is no more. Jonah will have many hiccups in this road and we just need to be able to go with the flow. We just need to be able to face whatever comes and that is sobering to realize.
I can tell you this has taken a toll on me. Some days I feel emotionally drained. I worry about him and pray that God will make him “healthy” again. I can’t wait for the day when I can just sit at one of his soccer games and just watch him be “Jonah” again. Playing soccer, doing what he loves to do.
Some days I think it is easier for Jamie because he has little medical knowledge. I know he worries about him, but I don’t think he completely understands the complexity of exactly what is going on. I can tell you, he is glad he doesn’t either hahaha and sometimes I wish I didn’t know as much as I do :-)
We are blessed by all the wonderful physicians God has placed in our path. We were able to text Dr. Suarez a copy of his EKG and he was able to talk to the paramedics and call ahead and speak to the ER physician and give them Jonah’s history. That was a huge blessing.
We knew Jonah was one a kind early on, but oh my goodness, this is ridiculous LOL I guess we just need to know that God is in complete control and He has Jonah’s life already planned out and we need to Trust THAT Plan. As much as we know this, we still try to take back control and I think God is reminding us, HIS Plans are better.
All of Jonah’s blood work came back normal – Praise God. We got home about 2:30 a.m. It is strange to watch Jonah know how to read his own EKG now. They asked him last night if he thought he was going to go into the medical field and he said “no way”. They then asked him what he was going to do and he said “Play soccer”. This kid loves soccer about as much as he Loves Jesus!
My prayer is that he will be able to play soccer for many years, that God will heal his rhythm back to normal sinus rhythm, and that he will live a long life full of Joy. Jonah has an amazing testimony and I know he will use that for God’s glory.
As always, your continued prayers are appreciated. Prayers for Jonah’s healing and pray for our family as some days we are just exhausted. We appreciate each and everyone of you. Today, we will embrace our new normal and Thank God for all the blessings he has already given our family .
GOD IS GOOD. . . ALL THE TIME!!
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