To Surgery Or Not To Surgery

 




 Every Monday, the provider for that week rotates from to one of the five on staff to the next. Sunny hasn't had this week's doctor for a while, I think the last time was when they had just started noticing the declining function of her right ventricle, so he was very excited that her function was much better than it was at then end of February. 



 Now that she's older and on the least amount of sedation that she's ever been, she's more aware of what's going on - she has opinions, and she's an excellent communicator! The technician and I were both thankful she slept through Monday's echocardiogram. It was a pretty extensive look at the function and all her cardiovascular irregularities, so it took over an hour. 
They wanted a full study of her heart to discuss her, once again, at their surgical conference yesterday. 

A few weeks ago, the cardiac surgeon reached out to Sunny's doctor that was on that week because he had noticed her age & weight, and thought it was time to circle back surgery that as an option. They discussed her at their surgical conference & let us know that the team was willing to do her corrective heart surgery. After speaking with the surgeon and then went Sunny's cardiologist, we decided to wait.

 They both said that she's not in urgent need of it now, and could remain stable without outgrowing her stent & flow restrictor for a while.  And although the corrective surgery could add years to her life, the possible complications could cause a more rapid demise. So, we're going to continue to try to get home with our girl, and let her body tell us when we need to revisit discussing surgery!



Prayer requests:

- For g-tube free progress, & for Sunny's prospective in-home nurses.  


Thanks you for caring for Sunny & her parents so well🤍

Love,

Chris, Alyssa & Sunny




Sleep smirk


Night Nurse Alayna texted this picture & said: "Sunny is ready for tiny tots in her summer dress!"

Tiny Tots playmat time





We just think she's the cutest. 







 









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