We are exactly a week out from Joy’s palate surgery and ~finally~ got official clearance from cardiology just this morning that we can proceed as regularly scheduled. It’s been a whirlwind of a week trying to get that straightened out- I got a call from pre-op last Wednesday who announced they felt the need for us to see Cardiology before proceeding with surgery because of Joy’s history of having an SVT after her last surgery, otherwise we would have to cancel and reschedule her surgery. (For those of you who don’t remember or need a reminder- the evening after Joy’s surgery last fall, her body kind of panicked due to the stress the surgery caused and her heart rate was in the 330s bpm and the staff in the PICU ran in with the crash cart and administered a medicine to slow it that could have stopped her heart so they had the “paddles at the ready” to jumpstart her heart if needed. It was a terrifying experience but cardiology followed up with us and continues to hold that Joy doesn’t have any underlying heart issues). Cardiology sent us home this morning with a heart monitor to track Joy’s heart activity for the next 24 hours to make sure she’s not having mini SVT episodes at home that we don’t know about, but the results won’t affect or hinder our ability to have surgery next week. It’s still uncertain if we will be staying the standard one night overnight for recovery and observation, or if the history of Joy having an SVT the 2nd evening following surgery would require us to stay two nights just in case. 

For a moment there was a concern about Joy’s apparent lack of weight gain for over a month but she has now bounced back up to her normal percentile range. She still isn’t eating solid foods and her GI doctor is stressing the need for increased caloric intake, so we are hoping once Joy has recovered from surgery she will be more willing to try food. She did finally take a bite (and swallowed!) of food for the first time a few days ago so that’s promising!! 

I’ll keep everyone posted the morning of surgery how things are going. Thank you for all the prayers for Joy, her surgeon team, and everyone else involved! ❤️