#PrayForJonah!

#PrayForJonah 

As many of you, our 13 y/o son, Jonah, was diagnosed with a very rare heart condition.  So rare that there are ONLY 20 documented cases in the whole world.  Jonah has a severe narrowing of his coronary sinus known as coronary sinus stenosis.  It was found because he started having severe chest pains during exertion.  In addition, there is only research on 5 of these cases.  

Jonah had undergone 2 heart caths, an echo, EKG, and a stress test since November.  The doctors gathered and came up with a plan so on Friday, Jonah underwent another procedure/heart cath at the University of Michigan.  We were told they were going to try a balloon angioplasty and then if necessary proceed with a stent.  

The procedure was very difficult, due to the narrowing they had to call an EP doc to come over and get into the coronary sinus.  Dr. Lloyd was able to inflate the coronary sinus, but as soon as he withdrew the balloon, he said it instantly deflated.  He came out and informed us that the procedure did not work as they had hoped.  He also said he was leaning towards open heart surgery.  

He said a stent is a temporary fix, but open heart surgery, as invasive as it is, would be a permanent fix for him.  They are presenting Jonah’s case tomorrow, Monday, at 4 PM to come up with a plan of action.  Jonah had some complications after the procedure, ended up with a pneumothorax, some EKG changes, and hypertension, but they were on top of all of it and he was able to go home late yesterday afternoon.  

When Jonah found out the news on Friday night, he was heartbroken as we were for him.  We all did a lot of praying and know that God is in control and this is not going to stop Jonah.  

This is the shirt we got for Jonah and it has his soccer number in the heart #22 #TeamJonah

 

On the way home from the hospital we started talking to Jonah about what the doctor is thinking with open heart surgery and why he thinks that is best for Jonah. We were asking him how he felt and if he wanted to talk. He said on the way to the hospital Friday for the procedure he felt like God told him it wasn’t going to work. We asked him why he thought that. He told us because that would be too short of a testimony and God is bigger than that.

He said when we prayed last night that he feels calm now – he said he is scared but he knows God is giving him a BIG testimony to share. Boy is there power in those words and great faith. To have faith like a child.  

We are asking for your continued prayers.  Dr. Lloyd informed us he would be calling us Tuesday to let us know what they are planning on doing next.  

I have to end by saying we are so impressed with U of M – from the dietary, housekeeping, unit clerks, nursing staff, and physicians – It is definitely one of a kind hospital and everyone we encountered was so full of Love and Compassion.  Thank you Jesus!!  

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