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Post Surgery Update






Cardiologist Appointment 12/11


We did not get the news we were hoping and praying for. Nolan’s heart function is still low and not where they want it to be. But was a “slight” improvement.


The cardiologist said that this is “uncommon” and “concerning,” but he is “cautiously optimistic.”


Today our cardiologist will be speaking with his team along with Nolan’s surgeon to get their additional thoughts. We should hear from him by 7 pm this evening.


We are disappointed. And sad. And mad. And "cautiously optimistic."


He did say that on the outside Nolan looks “perfect.” His breathing, heart rate, etc. is all where it should be, so he is surprised the echo is showing what it is. Followed with "uncommon and concerning."


We go back in 3 weeks to see if there is a more positive change. Please keep praying.


We are hoping that we also get some good news today after his cardiologist speaks with Nolan’s medical team.


Cardiologist Phone Call 12/12


I talked to Nolan's cardiologist (Dr. V) tonight. He has been working with Nolan's surgeon (Dr. K), the echo team at CHOA, the head of CT at CHOA, and met with other cardiologists about Nolan's heart function.


Dr. K said that surgery went "beautifully" and he did not see anything that could be causing the low heart function, nor did anything happen in surgery to cause it to be lower.


The medical team does feel there is an "excellent chance" the heart function will increase with time (it is uncommon, but they have seen this before) but they also need to rule out anything that can be "reversed" (fixed with additional surgery).


They want to look at the coronary arteries to ensure that nothing is wrong (Dr. V said they would be surprised if something is wrong, but they need to check to ensure they are not missing anything (almost everything else can be seen on echo).

The head of CT is currently reviewing Nolan's case to see if a CT scan will give them everything they need. This is the non-invasive option but will require Nolan to go under anesthesia again.


The second option is for them to do a heart catheter. This would be a procedure they would use a catheter to go into the heart, and he would have to go under anesthesia again.


Our hope now is that they will be able to get what they need with the CT scan. His medical team is meeting again tomorrow to see if this will work. They do not want him to have to go for a CT scan, now and then a catheterization (that is why they are meeting again to discuss).


WE ARE PRAYING THAT HIS TEAM IS CORRECT AND THIS WILL BE JUST A PRECAUTIOUS MEASUREMENT, AND THERE WILL BE NOTHING WRONG WITH THE CORONARY ARTERIES.


Once the CT Scan (or heart catheterization) is complete, they will likely admit Nolan to the hospital to start heart failure medications. These meds are best started in the hospital so they can monitor him and make adjustments if needed.


We do not have a timeline yet but Dr. V is hoping we will be able to schedule within the next week. We need to get Nolan started on medications as soon as possible, but we also need answers about the coronary arteries.


We are hopeful but worried. We welcome all of your continued prayers. I should get more information in the next 24-48 hours and will update everyone on the next steps.


Thank you for loving and supporting us.



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