Today Jonah had his first official cardiology followup app’t since his surgery. It always makes us laugh when the room is full of doctors because everyone is so intrigued by Jonah’s heart condition. If you have been following Jonah’s Journey, you know he is only the 6th person with this condition in the world.
Dr. Suarez told Jonah today that everyone will be monitoring him closely as he will be setting the standard. He said normally they know what to expect, but since they have little to no information on his condition, his journey and aftercare will be so important.
Jonah has been doing so well so we went into the app’t thinking the doctor would say he is “Perfect” and give us the instructions to him going back to soccer, etc. Unfortunately, that is not what happened. Jonah had an EKG done and the cardiologist came in and let us know that it has changed.
He is in junction rhythm, which means the upper chamber of his heart is not working. The doctor said this could be because of him just having open heart surgery but more likely than not it is because his right atrium is patched over. Part of the surgery was making all of Jonah’s blood combine, meaning both the red and blue blood now go to the left atrium and no blood enters the right atrium, because of the narrowing of the coronary sinus. To let you know how rare Jonah’s condition is, there is not even a name for it.
We were told that this was a possibility when he had the surgery, but because this procedure is not a standard procedure, they were not sure. The doctor ordered a 48-hour Holter monitor so they can watch his rhythm and see if maybe he goes in and out of normal rhythm with the junction rhythm. If he stays in junction rhythm, he will need a pacemaker implanted.
This was quite a blow to me and Jamie as we truly just want Jonah to get back to normal life. I cannot say enough how much adversity he has already overcome that it would be nice to go to the doctor’s just once and them say “Everything is good.” We keep reminding ourselves that it could be worse and we need to be so thankful. Many will say the pacemaker is an easy fix, but remember, they don’t really know if that will actually “fix it either” because of his condition being so rare.
Of course, Jonah’s first question was “Can I still play soccer” LOL He was told he can go back to full contact practice April 6th and then about two to three weeks later, can play in games as long as he is feeling up to it. He told Jonah even if he does need a pacemaker, he will still be able to play soccer, this will just be a reassurance that his heart rhythm stays normal.
They put the Holter Monitor on Jonah and said by Friday or next Monday, we should have the results and know what the game plan is. On the way home, Jonah said I thought my heart was “fixed”. Then he said, what do you think God’s plan is? He did not say this questioning if God had good plans for him, but wondered what I though God’s plan was for him – His testimony, etc. Unfortunately, I had no answer for him, but I did tell him that God’s plans are ALWAYS better than ours.
The cardiologist did tell us that this could just be a temporary response and his heart could go back into normal sinus rhythm, so I told Jonah we just need to pray and ask all of you to join us in prayer that his rhythm is fixed. We know we serve a BIG God and all things are possible with him.
Thanks everyone for your continued prayers, love, and support. We appreciate you all.
GOD IS GOOD. . . ALL THE TIME!!
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